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The Back Story(1000 Posts)
Hi to all fellow back sufferers. I've been on Spooning for a while but don't really feel I fit as I'm not actually ill, just have a chronic (and permanent) back injury. So please post here, no niggle too small. We can share experiences, tips and moans!
Quick history, age 48, last year had sudden crippling back pain eventually diagnosed as disc prolapse L4/5. All conventional treatments tried and failed so had micro discectomy privately.
No progress, and much worse leg pain followed. V long story short was finally seen by second neurosurgeon who diagnosed severe scarring around the nerve root as a result of the surgery. Poor outlook for surgery but we gave it a go, so had second op with similar lack of progress and final MRI showed even worse scarring. Only option chronic pain management . Had several injections with not much effect...
So, permanently disabled, use a stick, endless drugs and a lovely blue badge. Along the way dismissed from career of 25years for ill health.
Sorry, it's a grim story, but hey, I'm ok. Not depressed, have an okish quality of life with the help of my fantastic husband and friends. I walk, albeit slowly and not far, swim a bit and can please myself. Luckily my boys are young adults.
So come along and share. Moans and groans ok, tips and recommendations welcome.
Just don't tell me to see your lovely chiropractor, I might just punch you!(wink)
I've got Sacro-illiac joint dysfunction as a result of severe SPD for 17 years!
I have had both my SI joints fused with hollow bolts that run from my hips, they are filled with a synthetic bone paste which makes them really solid.
I have regular steroid injections into my SI joints, but the last one I had in April nicked my S1 nerve so I have a numb left leg and foot. The only thing they can offer me now is it continue tight the steroids or radio frequency denovation. I am in 2 minds about the denovation.
I already walk with 2 sticks, don't do any exercise because everything, including swimming sets me off.
I'm not depressed either, I make the best of what I have got. My husband still clings on to a bit of hope I will get better, my kids (16&18) are amazing. I worry I put on them too much sometimes, but they say I don't.
I am 36, two children, DD aged 7 and DS aged almost 4. I had an injury about 3 years ago, which it is suspected might have chipped my vertebrae at L5/S1 but was undiagnosed due to other injuries (broken nose, cut to head etc), and was also pushed out of alignment. This may have, in time, caused the disc to become prolapsed and I have suffered for almost two years with severe back pain and trapped sciatic nerve, rendering my left left almost un-moveable (this theory is only a theory that came about as as a result of a) a MNer reminding me of this injury and b) the neurosurgeon finally seeing my MRI just prior to surgery and spotting the misalignment, after so long, he did say it may just be one of those things, but the timing of injury followed by back pain is quite coincidental).
So, following a lot of anguish, pain, waiting, waiting, hanging on to my job by the skin of my teeth, my children suffering my relationship suffering, my friendships suffering, I had micro-discectomy in June this year to fix the disc prolapse, it was largely successful but not fully completed as to do so would have meant fusion too as laminectomy on both sides would have made my vertebrae more unstable than it is already. The misalignment was not fixed as not significant enough to risk fusion right now.
I am now back at the gym doing intense physio including cross trainer, swiss ball and swimming, along with body balance. I have just recently stopped walking with my crutches, although I have to take them with me if it's unknown terrain. I have to wear trainers, and still have constant back pain, and my back gives way daily (so probably should have my crutch most of the time but am stubborn).
I am back at work, but it is so tiring, it hurts my back to sit for so long and there is only so often i can get up and walk around without my work being seriously affected.
I am still waiting for my follow-up with the neurosurgeon, 14 weeks post-surgery and so don't know if the misalignment is going to continue causing problems - if so, fusion will be the only option further down the line, but for now I am managing.
Depression? Mmm, the jury is out on this one. I have fought long and hard to not be depressed, to not let this get to me. I think, finally, I might be failing at that, despite being in a better medical shape than I have for two years. The damage this has done to every fibre of my life has been epic and only now I am coming out of that fog of 8/10 pain constantly, can I see the aftermath of it, and trying to pick up some of those pieces, and I think that is what is affecting me now.
matilda I am no sorry you are in such a shit position, how horrible and how amazing of you to be able to get on with life so positively.
littlemisswise that's awful! What a horrible position to be in.
LMW that's awful! but lovely yo meet you. 17 years is a really long time. Can I ask if you've been on meds all that time? The long term effects do worry me but life would be unimaginably terrible without...glad you are keeping cheerful ish,it's hard work sometimes isn't it?
pavlov hello again! I think I was definitely down after my ops when I kind of just 'knew' it had all gone wrong. I def have some issues which I have boxed away for now, marked 'deal with later' .your back sounds as if it has improved so that's great. Do you think your regime might be a bit too much? I do have a hydro program that is do-able most days and I told you how I get round swimming. It's so frustrating though. I used to be sooo fit.
I am starting a Pain Mangement course next week so will report back if I glean any nuggets of info. Tbh I'm a bit doubtful but willing to give it a go. At least it's a regular fixture, I miss the former structure of life so much. Meeting for coffee etc used to be a treat, now it's all I do, bar medical appts.
Oh good luck with pain management course! I did an expert patients course, which was CBT oriented I guess, it was about coping with chronic health conditions and was really quite useful. I mean, it was stuff I knew but didn't really practise like I should and it was great to talk to others who had illness and disabilities that affected their every day life, how they cope, their advice and also to just not feel like I was the only one struggling, and people who actually got it, how bad it all could feel, even on 'good' days. It's run by people with chronic conditions themselves so they come from a place of understanding, but it's an accredited course so is properly structured. Oh and they supply biscuits . Might be worth looking into at some point.
Do tell us how the pain management course goes, if you find any of it helpful. I was put on a waiting list, but I suspect that means it was filed in the bin...
Have either of you - or others who come along - had OH assessments at home? A friend of mine has just had this for her back problems (adult diagnosed spina bifida, diagnosed at 39, suffered for years being told it was hip related!) and has been given some things to help - a chair for her bath, some railings put in up her steps into the house, and a few other things. Also a friend of mine who has RSI/Carpal Tunnel had OH assessment and they had all her handles in the house changed, doors, cupboard doors etc, so she could open and close things more easily. If you haven't had it done, might be worth getting it done for some advice/help with small changes that might help around the house - you probably have had it though so might be teaching you all to suck eggs!
Sorry, didn't mean to be rude this slipped off the threads I'm on bit!
Matilda I have been on meds constantly for 9 years now. I had the front of my pelvis fused, which failed, so started taking the meds then. I had it redone 6 years ago.
The meds don't make a great deal of difference to me, tbh. Tramadol helps but I can't stand the side effects and they give me terrible migraines. I am too scared to take Morphine (have been offered it lots of times) because I worry about becoming resistant to it.
At the moment DH left for a four month tour of duty 3 weeks ago so it's just me and the boys. Usually I have a GA and multiple steroid injections into my pelvis every 3 months, but decided that I didn't want to put on my boys, especially DS1 who would have been doing all the driving and running around. I am scheduled to have them the end of January so it will be five months.
I've had an OT assessment. I have aids which make things easier for me.
Wow LMW, that sounds incredibly difficult. I agree about the meds, it's so hard to be both pain free and functional. Will the injection that went wrong wear off at some point? I had L5 done a few weeks back and I think it's just kicking in but I keep wobbling over. I find it so hard to say what works and what doesn't because it's different every day! Jan sounds a long time to wait, I hope you'll be ok and your DH stays safe.
Pavlov, I remember you discussing the big shoe issue. Same for me and at 5'2 I could do with a heel. Anyway I just got these www.office.co.uk/view/product/office_catalog/2,17/1471402472 and it's like walking on air with very little incline of the foot. Also some beautiful boots from john lewis.
Anyway, hi to all back sufferers, twinge or wreck(me!). Enjoy the sun!
Hi all, fellow back pain sufferer here. Have had on off chronic back pain for 30 years since a slipped disc which gave me very painful sciatica at age 19. It's affected my whole life and every health professional has given me a different diagnosis ever since. Different leg lengths, tilted pelvis, chemical change to the nerves, emotional causes etc. So frustrating! Have had chiropractor, osteopathy, physio, acupuncture, deep tissue massage, painkillers, was on traction for 3 weeks and had to walk with a stick for a year when I was 19. Worst thing is that I look totally fine from the outside and people can sometimes be v unkind and unsympathetic as they don't realise how painful and tiring certain normal activities can be. Tried to self manage with Pilates and yoga which can help but sometimes just aggravate it. Some days I just feel sorry for myself but know it could be much worse. Big hugs to all if you struggling with back problems, it affects every area if your life.
Hi, chronic pain all my adult life, made worse by falling off a horse 14 years ago and causing a disc prolapse and damaging the ligaments in my left sacroilliac joint. Went through a course of injections of glucose into the joint to try to irritate the ligaments into growing/strengthing.....Then offered joint fusion surgery, but it only promised more stability, not less pain, so did pain management course, hydotherapy and pensioner yoga.
Pain management was good for slowly getting moving again without doing too much too soon and ending up fucked. Also helped me accept the pain. Managed pregnancy 8 years ago okayish, but was utterly scunnered having to look after DD as a baby and toddler.
Have got used to lower back hurting and referred pain in my leg. However in the last year, new parts of my back are starting to moan. Physio on and off for the last few months, as my neck has been sore with arm pain. Am now in the weird position that private health insurance won't pay for more physio until I've seen a neurosurgon, even though I'm loads better than I was a few months ago. I wonder if there will be suggestions for surgery for profit rather than more phsio.......
Drug wise, currently coodamoyal and amytryptaline. Can't stomach naproxen etc, tramadol is too odd.
Hi scarlet and peri
Nice to meet you both. I am sooo glad my kids were grown up when this happened. Total respect to you,peri, for managing a baby and toddler.
I went to a different pain clinic yesterday, part of the London hospital I had my second surgery. Very nice. Doctor who spent ages with me. I was quite surprised that there are more options for me. He did describe my condition as 'very difficult', though.
Anyhow, on list for a lidocaine infusion. Never heard of that. Apparently only helps about 20%of people and then not for long. Next a course of three spinal injections in several spots. Never had much success yet, but who knows? Then he mentioned the possibility of a Spinal Cord Stimulator which Is an implant. Sounds quite invasive and scarey...
Started pain management group this morning so all in all I'm a busy girl!
Hope you are all ok.
matilda how did the pain management session go? Good to hear some new options might be available but at the stimulator! that does sound evasive. Have you done any research into it?
So many of you have had such horrible problems for so long, and I moan about a bit of back pain returning Things are slowly starting to decline here pain wise though . Pain has slowly been increasing, not helped I think by a period of absence from the gym for a week or so. I did body balance on tuesday, a little sore to start but thought I needed to ease into it. Except, I did a lunge, where normally I would step into the position in a couple of steps (if you don't know what a lunge is, best to google as I can't describe it well!) I sort of forgot to avoid it, and went to step right into it, full forward, outside my hand; except, as my leg was in the air, I felt something in my back 'go'. And then I was stuck. And, stupidly I carried on, albeit it slowly and avoiding many of the following tracks. Stupid. Stupid. I know how it goes, the pain is reasonable at the time but gets worse and worse.
Since then, leg pain has increased, both legs, stabbing pain, some cramping pain, and at work yesterday tight pins and needles in my foot (it went again, but first numb pins needles for a little while) and I can't move at all other than as a robot without my back literally giving way. Back pain is increased. I am refusing to take my meds, apart from napraxen, I don't want to be on them.
God knows what I have done! But, to be honest the pain was already increasing, this seems to have just sped it up. I am a bit worried about scarring (fibrosis?) how would I know as it can't be seen?
This is never actually going to go away permanently is it?
Oh. And. I spoke to neurosurgery appts. I was meant to have my 12 week follow up mid september, told it was going to be 6wks later than planned or thereabouts. Yesterday, was told there are another 100 people on the waiting list without appts before me, they are making appts 6wks in advance, so estimate another 2 months or so, after those 6wks. So, basically they cut my spine open, fuck about with it, see me for 5 mins afterwards, send me home and leave me to get on with it. Not impressed with it, but what can I do?
Sorry. Huge moan. Hope everyone's pain levels are reasonable today.
matilda I can't link to those shoes! I really really want a particular pair of boots, but can only get them online and they are a lot of money. I don't want to buy them only to find I can't wear them. They are Fly London, which seem relatively comfortable, those I have tried on in shops, but these are not as soft soled I don't think, the ones I want. I am going to work wearing smart shirt, trousers, make-up, hair done, pair of black trainers. Very classy. Not. I can't wear my dresses as my trainers don't really go
pavlov I'm trying again. They are Fly London!
Which I love, and...yes I did go mad...
Total bummer that your pain is still so bad. If you have the exercise bug would you try aquacise for a bit to let things settle. I wish I could reduce meds. This morning felt okish so only took one gabapentin, naproxen and two cocodamol 8/30. I am now unable to get off my bed. Bleugh.
Hope the links work.
Sorry, don't know why Office won't allow this. They are called Yind Wedge Calf Boots. I find them v comfortable. I guess you could wear them round the house to test?
The others, also Office are Wulfrun Creeper. In the sale £95 down to £30! Also very comfy. Look nice with skinnies or shortish skirt and thick black tights.
The JL boots are for best. When I wear them I keep glancing down for a quick admire. I've been in sensible flats for so long I'd given up on nice shoes/boots.
Btw can't believe your hospital appts. I would email PALS and copy in the Chief Executive. You've had neuro surgery, have ongoing concerns and have no follow up. Unacceptable.
Thanks soupdragon, how did you do that?
Sorry to hear about your back. As before this thread isn't just for severe problems. We don't have the monopoly on back pain, so please do join us. Have you tried Pilates? I swear by it.
soup welcome and thanks for sorting matilda's links! What does your osteo do to help? I saw an one at the beginning, who diagnosed disc problems and pretty much told me the best treatment was To Get a Grip. He wouldn't touch me other than to do a little acupuncture which didn't work. I have wondered if post surgery it might be worth revisiting one.
matilda love the fly ones!!! I will linky to the ones I want see what you think re comfort.
And yes to Pilates, body balance, yoga, etc for core muscles...
My osteo frees up the locked vertebrae in my lower back, as I understand it. The one I've chosen does it like a massage rather than the "tie you up in a knot and crack you out flat" type! It's actually very pleasant although within 24 hours I'm in pain and very grumpy - this wears off thankfully I can touch my toes after I've been. Must go back actually... I can barely touch my knees at the moment! My fault for trying to move a wardrobe.
It may be worth another visit, Pavlov. Explain on the phone and they might be able to say whether its worth a go. I'm "lucky" in that mine is not disk related.
I have tried Pilates and I know I need to do it but it I find it duller than a dull day in dullsville.
As for the links, I did the the old fashioned way by typing it with some text rather than automatically. I think the comma in the link messed it up.
soup you should try body balance then! it's to music which I like its faster paced than yoga, less clinical than Pilates, and make sure it's in a class. I am not so great with my physio exercises or Pilates at home as I get bored, but in a class it's great, especially as I find it motivational to be around those who can do it as I try harder not to look unfit ;) unfortunately that is also my downfall.
matilda I have some water based exercises to do for physio. I am going to get a float like you suggested on tmy other thread, for between my legs, so I can keep moving.
Right. I am recognising the leg pain that is returning, but the other leg. I am getting a tight/numb feeling around my foot, that has eminated as shooting pain through my butt down my leg. So, although I know that the diazepam while probably not help the leg pain, I have nevertheless taken 2mg, so maybe I can sleep a bit.
Docs tomorrow to kick up a fuss. And yes to PALS etc. It's a joke.
soup you need to try another instructor! Pilates is so not boring with the right person. I'm lucky in that my former instructor is a physio. Now I see her privately for an hour and she does half doing release massage which sounds a lot like your osteo. The we do half hour Pilates. I miss the classes but one to one is fab as it's totally measured to my abilities and problems. I'm still very strong in some respects. Wish I could have her a lot more often.
pavlov go for it, if you squeeze it tight your gluteus, abs and pelvic floor all get worked while you do front crawl. Apparently walking in water both forwards and back is good (but boring). Abs tight, push hard with back leg using glutes if that makes sense. Re the Pain Management group, um the jury's out on that. Not sure about spending the next seven weeks with a few of the group. I will do it though. Sounds pretty similar to the group you did but run by psychologists and physio.
I walked the dog with a friend this morning, sooo slowly. Then had drilling pain in my bottom and leg so spent another unproductive afternoon on my bed. So frustrating.
I have a lot of shooting pains, stinging, stabbing, but without numbness, oddly. So sciatica clearly, but no fuzzing, the odd pins and needles but not a huge amount and that comes and goes. But the pain is fucking annoying! It's not 8/10 in terms of level, it's more like 5 or 6 out of 10, but it's relentless, and it's from my back, deep within, right through butt into legs and feet. Walking doesn't help, in fact I seize up as I walk. It's similar, but not the same as previous pain, it's much more electric this time. And I have lost mobility in terms of moving sideways, I can't twist now, walking like a robot, as if I twist my back collapses. I have had that before, but at least this time it doesn't cause the cascade of pain and immovability that used to follow. I am finding that sleeping is painful but moving is a bit easier when I first get up in terms of shooting pain (just not the stiffness).
<sigh> well the good times were good while they lasted eh?!
How are you all? Chirpier than me I hope
Oh, pavlov deep sympathy. It's crap, isn't it? Could you see your GP and explain what's going on? They may be able to speed up your ahem, post-op (rather a loose term when it's so long) appointment. Since getting to see the consultant is about as difficult as getting an audience with God could you persuade your GP to refer you for an MRI ( insist on dye contrast) so
God your consultant actually has something to review? Or even pay for one...
On a jollier note I love the boots, both look comfy, slightly prefer the second ones but that's just me. I think the air filled heels are very cushioning. I ordered 3pairs of the black ankle boots yesterday ( bored!) and absolutely promise to return two.
Hope all back sufferers are surviving.
matilda i love that, buying three Will you return them
I think I prefer the second pair. I actually prefer the style of the first pair, but, the second are probably more practical for walking comfortably in, and I do need to think about that now!
I had a reasonable night last night, thanks to succumbing to high dose of codiene (after it wired me for a couple of hours first) and double dose of naproxen (2 x 250mg, missed lunch dose to do it, gp had said to try that when sleep is bad). But struggled at work today.
And then! Some fucking twat (excuse my poor language) beeped me and revved his engine as I casually walked without a care in the world across a pedestrian crossing holding up the traffic. how fucking selfish of me, just taking my sweet time and not letting him go for another 10 seconds. Except you tosser, I was walking slowly and gingerly as every step I took really fucking hurt! It's times like that where I wish I had my crutch, like a badge to say 'i do have a fucking disability you know'. When I have my crutch, although for some reason I sometimes get spoken to Veery Slooowly, I do at least largely get some patience crossing the road, and people will wave me across the road more. Grrr.
I was almost in tears by the time I got home due to a) pain b) that tosser and c) the daily grind of managing it all getting me down. I hate walking slowly and looking silly, the looks of sympathy from some work colleagues and the look of 'yeah right' from others, so I am trying really hard to act like nothing is wrong, and just get on with it, but that pretence all day, it's really hard work!
And it's only monday! Would I be really bad if I just said sod it all and had a duvet day tomorrow? I have to go in late to see the GP anyway as I tried this morning 30 times to get through and was engaged the whole time, so couldn't go today.
How are you all doing? How do you cope with ignorant tossers who make out like you are a pain, in the way, stupid etc? I need some good quips that are more powerful than the middle finger (not sure there is any, that certainly has it's place )
Yep, it's crap, isn't it? Nearly as bad as pity...
I use a stick so guess it's more obvious but some people just aren't very nice which is sad for them( my thoughts on a charitable day). I dread 'you don't look very disabled' when I park in a disabled bay. I do have a response lined up but will probably cry.
Have received two pairs of boots so far I think I have a favourite but who knows what will happen!! Must stop buying boots.
Been to Pain Group this morning. Very well meaning but haven't really learned anything yet. It's three hours in chairs so although I can stand against the wall it's long
Nobody was able to answer my question, how do I reconcile the fact that I liked my old life a lot better than my new one? There is no answer, I guess.
Hope everyone is having an ok day. Am going to watch nephew in his GCSE drama tonight. Wish me luck. Think I will have to sit.
Oh no more sitting for you! Hope it isn't too painful for you, and a good show.
Went to work. But also went to see gp. He is kicking some ass with referrals to pain clinic and neuro. He is cross on my behalf. He has given me some pregabalin, v Low dose and recommends I give it another try. Been on it before side effects were horrendous. Really not sure. He has also told me to not do exercise for a while. At all. Taken some steps back but not sure why/if this is something or nothing. He told me to not let this affect my mood...hmmm he means well!
That accepting your new life thing? Not sure I will ever come to terms with that myself. I want to be how I was!
I'm late coming to this thread but want to say hello to fellow back sufferers.
I've got ankylosing spondylitis (a type of rheumatoid arthritis that affects the spine) and disc prolapse at L4/5 and S1 which have .caused chronic sciatica since 2010. I can honestly say that the sciatica is far, far worse than the arthritis as it is more painful. I can't have surgery because of the AS and can't have any kind of manipulation (osteo, chiro or any type of massage) because of the risk of fractures.
Two weeks ago I had a caudal epidural and a nerve root block under sedation and it seems to have helped a bit. My foot is less numb and walking seems easier than before.
The surgeon had written 'L4/5'onto my back before carrying out the injections. That night at bedtime my lovely DH was helping me into my pyjamas because the sedation hadn't worn off completely. He wasn't wearing his glasses and thought the '5' was an 's' and said 'why have you got 'ass' written there?'
at 'ass' on your lower back, bet that confused him
welcome btw, you are absolutely not late to the thread. I am sure (and hope) that matildas great idea for getting all us back pain sufferers into one place will slowly bring everyone together, there are a good few of us (and some amazing people who have lots of knowledge and experience as well as handholding --how very mn--) and we all from time to time have questions, moans, successes that we share on our own threads so it's a great idea to have our own space!
Good luck with the caudal injection working. I had this early on in my treatment process and it did work, pretty well in fact, just not for very long (couple of weeks ) but I have heard it being successful for longer periods. I am hoping to talk to the pain clinic about the more localised injections that are on the site of the nerve, can't recall the name of it, but more direct than the caudal injection.
Does the AS affect all of your spine? or just lower spine?
I had facet joint and SI joint injections in the summer. They were super splendid til they wore off. Pain nurse is checking t see if I'm suitable for denervation. It sounds a bit scary but if it could help I'm up for it.
The AS mainly affects my lumber region and sacral joints. It has also started to affect my knees but the anti arthritis meds seem to be working. If only they had the equivalent medicine for sciatica treatment!
Are the injections you mention a nerve root block? I had one at L4/5 at the same time as the caudal epidural. If the injection hits the right place it definitely helps. I've had 2 done previously the first one (in 2010) helped a lot whereas the second (in 2011) didn't.
I agree with the idea of no exercise when pain is at it's worst. You really do have to rest and avoid aggravating the discs, which is easier said than done.
They were steroid injections. I'm a bit hazy about the next possible option - radiotherapy denervation??
Hello ladies, I have psoriatic arthritis, pretty much under control except for my bloody back which is awful at the moment. Main issue at moment is SI joints evil feckin things.
SI joints are a bastard aren't they.
I can't believe that 2 years ago I hadn't even heard of them! They don't even move (that) much ffs. I've got painful joints all over but nothing stops me in my tracks like the feckin SI joints. I've always had upper back pain but used to nod in sympathy at people with lower back pain and now I've joined the gang. I'm also very against any injections into spine after having dural tap from epidural for DC1. Nobody is ever getting anywhere near my back with a needle ever again so its tablets or nothing for me.
That deep achy sharp pain from SI joints is awful, especially when combined with sciatica <waves at kitten and denial>
One tip I can give is to visit a podiatrist and check whether your posture or gait can be corrected. My back pain was making me walk flat footed with my feet rolling inwards and insoles have helped to correct this. Because I'm walking with better posture the SI joints don't hurt as much when I move around. I've also found sitting on a wedge cushion helps rather than a completely flat chair.
Do any of you drive with adapted cars? I'm not driving at the moment because I don't have enough strength in my right leg and foot. Why don't more cars have seats with proper lumbar support? Even when cars have lumbar support in the seat, it's usually only on the driver's side. I use a mobility scooter and walking sticks to get around but driving would give me far more independence.
mouldy I am struggling to drive at the moment. I can do it but it hurts a lot. I wonder how much of my pain my be made worse due to posture and shoes etc. as when I wear my trainers which I have added inserts in, I can walk more comfortably. I do know a podiatrist actually, but not very well, I might tentatively ask her for some advice about whether I would benefit. And yes, I think it is the nerve root blocks I am talking about. I have reservations due to so many people telling about how it has gone wrong and such horrible outcomes as a result. But, I have had spinal surgery so thinking maybe I should consider it.
I also marvel at my understanding of terminology that I never knew about before, and how our spinal anatomy works! I am the font of all wisdom at work now and so many people ask me for advice and I come out with all these intelligent sounding theories and words
Very interested in 'denervation' denial <waves> I am going to google it now!
I am going to ask my gp for acupuncture again. I have made the decision not to take the pregabalin for now. I just can't face the side effects. I can feel things returning to how they have been already, with my reduced ability to help at home once again and the impact that is having on our family life. I am very worried that I will lose my job as a result of this.
For those who have had to give up work, how did you manage the transition, from income to no/minimal income? Do any of you work from home? How about mentally coping with losing a career? I am starting to make financial preps for it, cutting down on things I have enjoyed like my hair being done occasionally, reducing use of gas/electricity, getting rid of contact lenses etc, as my employer changes in April from government to private and I will likely lose my very reasonable sick leave entitlement and good support from my employer and I won't cope without that. I just feel like quitting now as it's so hard to work in pain.
hello to everyone! Where's matilda ? hope you are feeling ok after your epic day of sitting!
Here I am! Welcome to our thread, everyone. Lots of interesting points have been brought up.
My experience of injections hasn't been very successful but I have had some good tips from the professionals. Firstly, get them done in a place where they are gone under CT guidance. They can actually see the needle entering the nerve root. Secondly, two radiologists said that they recommend doing the injections as a set of three at monthly intervals. I mentioned this at my Pain Clinic appt last week and the consultant agreed this could work better and will do this. He's also planning to inject several spots at once. Sadly my adhesions/ scarring around the nerves seems to impede the impact of the injections. It's interesting that nobody here seems to have relief for long.
denial, I don't blame you for feeling wary but would recommend speaking to an anaesthetist about the injections. I used to be a midwife and epidurals in labour are very, very different. Especially if done under CT.
pavlov, yes! losing your career is devastating. Not just the loss of income but loss of identity, self and achievement. I am trying to carve out a new life but it's hard. Very luckily we can afford for me to not work but, combined with pension loss etc it's a huge drop. (I wasn't even a high earner. I just loved my job). I was advised do not resign. However much it hurts to be dismissed you are better placed for claiming any benefit, early retirement etc.
I'm in the process of applying for ill health retirement (nhs), any tips? Also, I got ESA contribution based for a year and am now advised to go for Support Group ESA. Any advice very gratefully received.
Finally, shoe update!! I am keeping one pair of ankle boots! Fly London from Office online. Laces up the back. So happy to find heels that feel like flats..
matilda I see what you are saying about not resigning. I won't resign. But I hate feeling so useless and think it would be better for my sanity to just not work there and feel so utterly useless. I know my colleagues don't view me with much sympathy, more that I am a pain in the ass that causes them headaches when I am there due to pain slowing me and making me forgetful and when I am not there as my work has to be covered. I just want to be at home right now, just pacing myself and using the little energy I have right this second with my children, for my children, they get the worst of me.
I feel that things are on the downward spiral. I cannot put my finger on it, but something feels wrong. really wrong. this is not recovery pain. not getting fit pain. not pulling a muscle pain. I c
I cannot believe I have just had major surgery and it might not have worked. Well, that's not true, it has worked, but I don't know what's going on now.
Anyway. Top coping tips - Who has some good ones? Also, what heat/ice pads/belts do you use? I have a microwave heat belt but it's not a velcro one, so it doesn't fasten and I could do with one that does both heat/ice (maybe with inserts so I can alternate within the hour) and that fastens so I can use it at work. Any recommendations would be goo
I had to give up my job but luckily I've been able to continue working a few hours a week from home. I earn much less but it is better than nothing and I enjoy it even though it is only a few hours a week.
Matilda is spot on about not resigning. It's horrible to think about but let them dismiss you once you have exhausted all sick pay options. Pavlov, is it possible for you to reduce your hours or to work from home at all? If not, then start to think about the skills you have and whether working from home would ever be an option.
Matilda, to claim ESA it's a good idea to speak to your doctor, consultant and/or other HCPs to get as much evidence together as possible. I'm not sure about the NHS ill health retirement but I would imagine you need to list all the things that you can't manage that are considered to be part of your job. It's better to give too much information (especially if your doctors can confirm everything you say) rather than leave any uncertainty that you could keep working in any way.
Thanks mouldy, I know you are right, and matilda, to wait until they fire me once there is no other route. I just feel awful doing that knowing I am not up for the job now. Pride I guess. I have considered reducing my hours, that is possible under disability grounds, I was considering doing it temporarily, just to give me some time to get back on track, but, DH has lost his job and although we can manage financially if I did that
just I think I have to work 24 hours to get WTC. It's not a huge amount, but if I lost a few hours a week, plus WTC on top of that, it's just too much for me to feel comfortable about. But, I think I might have to consider it if things don't improve, even if only for a few months.
I do have a potential self employed job I can do from home. I think I can make it work enough to get a reasonable income from home, but, I need to be out of work to test that theory as it will take some work to build up, can't do that right now! But, yes, bide my time. I really do need a break though, holding out for a couple of days annual leave at half term but not sure I can make it that far!
matilda I don't know anything at all about medical retirement, or ESA for physical conditions, I only know how it works for drug/alcohol addiction and mental health conditions (thanks to my job) sorry!
Sorry all, it's too mememe
pavlov you are still public sector DO NOT consider resigning. sorry to shout but it is not your fault that this has happened and you do not have to give up the only safety belt that your family has at the moment (sick pay and benefits) because you are being made to feel guilty about a genuine disability. Do your best each day and try and ignore the looks, glances etc of colleagues. You did not do this. This is not your fault.
Matilda thanks for reassurance on injections
so, what therapies work? Who has tried acupuncture? bowen therapy? I have heard fab things about Alexander technique but struggling to find a local therapist with reputation that I trust enough to pay for. Anyone tried it? And, how about that thingy that realigns the film over our muscles? I can't for the life of me remember what it's called....(expect you to have no clue what I am talking about!). How about chinese herbal medicines, anyone tried anything like that, anything homeopathic, alternatives to usual clinical medicine/alongside?
I'm going to talk to my physio abut acupuncture I think as she does it, but shes private and expensive. Pain nurse suggested one-one pilates, but I do have really good core stability.
Wine helps while i'm drinking it. Baths help while i'm in them. Perhaps we should try starting each morning with a glass of wine in the bath?
You can ask to have your injections done under sedation. it's what my pain consultant does as a matter of course. It was brilliant. Way better than a GA for me. Lay on my tummy, breathed in some gas while they popped a cannula in, then I woke up pain free and ready for a cup of tea.
of course one the local had worn off I felt like id been kicked in the back for a few days until the steroids kicked in.
My pain management course includes a session with an Alexander technique teacher in the group. Then, I believe we can have eight one to one sessions with her so I will def do this. I already do loads of Pilates so I'm thinking there will be similarities.
I like heat on my back not ice. Physios and consultants happy with that. Haven't found any acupuncture etc that helps. My physio does a great release massage but the effects don't last long. Sorry, but for me it's drugs that help. And lying down
like a great lazy lump.
Have had to give up eating on account of weight creeping on which I hate.
pavlov, do you have Occ Health at work? If so have you seen them? They can recommend adjustments to your working hours, work place etc. it's probably a good idea because if you do get fired (sorry) then it puts you in the best possible light. It actually sounds as if you should be off sick now. It's unfortunate but there you are. I was off continuously from Feb to December. I had to attend regular HR reviews which became more and more formal. I was eventually fired in January. In the end it was dreadful, but a kind of relief it was over. They refused my request for unpaid leave to have and recover from my second op. Truth is, employers don't like bad backs or mental health. Now my registration is going to lapse soon so even if a miracle happens I won't be a midwife again.
Anyway, have decided that if tomorrow is a good day I am going to try to go to the cinema on my own. First time since January 2012 and I love films. Wish me luck...
badkitten, what a fab idea! Best I've heard, anyway.
I hope you can make it tomorrow matilda What are you hoping to see?
matilda oh that just sucks I am so sorry to hear that. I agree about bad backs and mental health, not easily fixable, they can't always see the problem, and they know it won't necessarily get better, and unpredictable at times.
My employers have been largely good 1) because my recent boss has a disability herself and stretched the boundaries of what she was allowed to do/interpreted the disability/sickness policy with some spin to allow me more flexibility to stay in work (like, technically, if I work over half my working day and leave due to sickness it doesn't count as sick on my record, so, when my extended phased return was refused higher up, she followed this principle by saying that as I had worked my half day and was unfit to stay at work, I should go home! The deal was that, on the days I felt up to work full hours I would, but if I struggled, I would have that get out if I could make it to lunch time. She also let me come in late and leave early accordingly and make my hours up on my shorter days. And, she would leave it as long as she could possibly get away with before formal HR meetings (46 days absence for one period). but she knew surgery was looming so she was getting me through, 2) my HR boss, the BIG HR boss, her husband has had spinal fusion, when quite young actually, and has ongoing problems from this, so, she came from some understanding, and probably went home to check with him I weren't faking it , and me and her go way back, including some conflict that we got resolved, she knows I would not mess around.
But, my old boss is gone, my new boss is a different breed, he has been recruited to weed out the shit staff. As soon as i had my surgery he had organised a case conference and indicated it was not a disability. Luckily, I am a fighter of stuff like that so made sure the HR boss confirmed that it was a disability and all my sickness related was recorded as so. But, he is not someone who will let any sickness go. my other boss would have told me to go home and not return until I was feeling able to work properly again. This boss said to me when I told him I was in a lot of pain 'so, how does that affect your work?' and that was it! (not that he listened to the answer ). And the HR boss, I heard rumours she is jumping the sinking ship and taking redundancy of an amount not to be sniffed at.
It will be interesting to hear how the Alexander Technique works. I hope you make it to the cinema!
oh and yes to OH. Three times. Once on the phone, got a new chair. Second face to face with a GP, got another new chair, headset and little paper holder thingy and a confirmation of disability for equality/recording. Was told they needed to give me more flexible working. Third time was post surgery, he said it was not a disability (luckily already recorded as such so remains that way for good now), he said that the only adjustments that need to be made are no heavy lifting, bending until I feel ready, and a phased return of longer than they were prepared to give me. I might ask for another one to support a change of working hours, but in reality they will probably let me have it if I just write a letter asking for it and cite it as a disability related adjustment.
I can't beleive your employer wouldn't give you time off for surgery and post-op recovery! Surely that is illegal under the Equality Act? I thought you had to be given reasonable time for rehabilitation, even if it was unpaid time off?
OYBBK I like the idea of that injection just for a bit of sleep and then a cuppa after!
Take your own snack though. The two biscuits I was offered didn't really cut the mustard after a 12 hour fast.
I've had back problems for 30 years and the frustrating thing is that every practitioner has told me something different and prescribed different treatments. For me it's just a question of managing it. I've had Bowen, acupuncture, deep tissue massage, Alexander technique, physio, osteopathy etc. yoga and pilates can help but can also aggravate it. Some days the only thing that relieves it is simply lying down. Prozac helped too as it used to make me really depressed. I don't think there's a holy grail, just trial and error really.
Slightly odd treatments that helped ( short term) was sound healing and masturbation...!!
Read recently that antibiotics may be able to help many sufferers. Watching that with interest...
scarlettohello <waves> i like your honesty endorphin and hormone rushes are fab painkillers! I have also heard about the ABs and if I find I am subject to 'non-specific backpain' once further investigations have either not started (it's all soooo sllooooow) or proved fruitless I am most certainly up for trying that. I read that something like 40% (possibly made up from me, but something like that) of backpain started at some point as a result of infection of some kind. It certainly makes a lot of sense when it comes to conditions that have been linked with other conditions that might or might not be triggered by infection/inflammatory responses of some kind I have read that ME/CFS, fibromyalgia, and even conditions such as RA and MS, lupus, could be linked with having had an infection of some kind (most likely an undetected infection) that produced excessive inflammatory response in the body, and in some instances, it may be that the body has reacted to it - not sure how plausable that it, but it certainly would make AB treatment more likely to be a success to some degree if that were true (although my understanding is that those conditions remain long after any infection).
I do know of a MNer who has tried the AB treatment, she asked to try it as soon as it became known about. She has spoken of some success (no miracle cure). I won't say who though, as she may well come along soon (when I prod her to) and tell you all. Or not
Oh yes, and lying down! Sometimes, I think that whole 'don't lie down for long with a bad back' business is just to get us back to work. I swear that sometimes nothing works as well as staying bed for several days.
Diazepam works too. But, unfortunately, can't be taken daily. Well, not without buying it off the street
and sorry to hear you have had such a long rotten time of pain
oybbk that's poor form isn't it? you would think they could manage a decent enough biscuit.
You'd have thought so. Next time I'm going to get a pizza delivered to my bed
oh you so got to do that! I did that at work once, and the look on my colleagues' faces were priceless. I can't imagine how shocked they would be in hospital. Although, I bet it wouldn't get that far. They would confiscate it before it got to you, and they would eat it themselves
Pavlov and Scarlett you are so right about lying down being the best cure for back pain. I swear that a day of bed rest is better than anything else that I've tried.
Ohyoubadkitten, I was given two slices of buttered toast after my sedated injections which is slightly better than biscuits but nowhere near the joy of eating a pizza!
I'm not sure if it was real butter as I scoffed it so quickly. It may have been
wow mouldy - I'm asking to change hospitals. Its clearly inferior where I am!
I bet the pizza wouldnt make it the delivery person would never find the right ward - you need gps and a sherpa to find anywhere in our hospital.
Ok, I really feel like a world class authority (well nearly) on this topic. Here are my experiences.
Hosp. No 1: nothing, nil, zero.
Hosp. No. 2: invited to gobble as many biscuits as possible. Cup of tea.
Hosp. No. 3: invited to hand my credit card over as soon as possible.
Hosp. No 4: tea/ coffee machine. No biscuits.
What seems clear is that NICE have overlooked this important aspect of patient care and safety and need to issue guidelines ASAP.
I've been to the cinema!! Went ok and enjoyed the film, Blue Jasmine. Back now screaming along with leg so what's new?
Yay for a cinema trip Sometimes youve just got to take the consequences and have a bit of fun.
Credit card??? What were they expecting you to buy?
I am so going to take something next time. Perhaps a big slice of cake. Mind you the woman in the bed next to me got very sick after - apparently sedation doesnt suit her - so it might be considered cruel.
Sorry, should have said hosp no 3 was private. £910 for one injection!!! Didn't really do much or last long. No sedation at any of these appts and a complete mish mash of nil by mouth/ eat what you like. Long admission forms/ sign on the dotted line. No consistency at all. And very little food .
Good gracious!! Does make you grateful for the nhs even with all its issues and slowness.
It's so bizarre the different way they do them at different places. I had 6 injections in the one go so I'm grateful for the sedation cos I might have changed my mind after a couple! . What was it like without???
Oh dear, am paying for the cinema excursion. I thought I had stretched myself out enough in the seat and took my cushion, but no. Cinema= pain flare-up..
Re having injections without sedation, it was fine. Last guy asked if it was hurting and I said 'if you remember, I am the girl who feels like she's been hit across the back with a cricket bat and has someone banging a nail into her buttock. So no, the injections are fine.'
After the injection he told me to take it easy and not go to the gym...WTAF do they think it's like being disabled with a spinal injury?! Absolutely no idea, I'm afraid.
What you need is jacuzzis in cinemas with little plastic pots of popcorn that can float.
That would probably be quite comfy, if a little steamy.
Not go to the gym? Why did he think you were there?!
Waves to OYBBK my fave weather person
I'm a complete fanny. I rocked up for my neurosurgon appoinment a day late. They've not charged me thank goodness and can see him in 2 weeks time. ( still trying to get my head round the weird short waiting times going private ).
On the point of acceptance as opposed to wanting my old life back......it took a long time........now so much time has passed since I was pain free, that life has totally changed anyway. I'm finally quite good at planning life so if I think an activity is worth it, but will wipe me out, I'll have nothing else apart from essentials planned for the next couple of weeks. I'm lucky that my friends will still always invite me to things even though they know that I often say no.
I'm certain that keeping moving has helped me. I've always had dogs that need to be walked, so am out pretty much every day with them. Helps my fitness and my head. I occasionally have a day where I'm so sore/tired that I do take to my bed and take max amount of cocodamol/valium, but never 2 in a row. Actually what I really miss is having lazy lie ins. When I wake up I'm sore, so have to get up and moving. I'd love to wake up and then have another snooze.
peri, have you seen the storm thread?
Oops about your appt!
It's good to have friends that understand. Mine do too, but I'm rubbish at saying 'well actually, I feel pants'. I try and fit way too much in and so people don't realise how much pain I'm in. I did that today and I'm really paying for it tonight. I can't lie in either, I'm awake at 4 or 5am each morning as the pain kicks in. sometimes i can doze uncomfortably to about 6. I wish there was a painkiller that lasted through the night.
matilda oh no sorry to hear you are still suffering, but at least you did it. I love the idea of a jacuzzi/cinema rolled into one. How cool would that be?! hot tub, big screen, bowls of popcorn on the side, drinks with straws in. bliss! How are you feeling now?
perihelion I am yet to reach the planning stage and find myself continually floored by pushing myself too far. This evening was a good example Good job you didn't get charged for missing your appt. I would so hate to miss mine, I would have to wait another 6 months
I have just taken DD to a rollerdisco birthday. It was in a gym hall in our local sports complex. It was amazing actually, a huge sports hall with disco music and hundreds of kids, teenagers, adults (and a lot of people in onesies ) whizzing around. DD can't skate. well, couldn't. So, although I said I wasn't going to skate, I still had to hold on to her as she fell around the place for a long time before getting the hang of it enough to go on her own. but. not before screwing my back entirely. Did you know that the natural instinct to catch your falling backwards child doesn't go when you have a bad back? Nope, I didn't either, as my DD fell backwards more than once and I couldn't stop myself from catching her. Fucking Hell! I might as well have skated given the pain I am in now! I carried on though and she got better and better so in the end she was able to go solo, and that is done now, so I can take her again and won't need to do this again. But. I didn't once think about how I would be managing it. I didn't know what to expect I guess, so hadn't considered she would need my help (had childhood recall of a 'rink' with sides to hold on to, but nope! none of that!).
So now, I am in bed, having taken maximum codeine, napraxen, and 2mg of diazepam. The area around my scar tissue is actually swollen! pain in both legs, and weirdly, a huge amount of throbbing across the top of my calves.
Anyway, my own fault, don't expect sympathy .
Has anyone tried inversion therapy? I was reading up about it, as I was thinking how nice it would be to hang upside down for a while, I didn't realise it was proper therapy!! Does it work? Should I consider hanging off the end of my bed?
I don't lie in, but, I also don't always get up. I lay in bed in pain, knowing it will hurt to get up, so not wanting to, but not enjoying laying in bed as it's also so uncomfortable. I can't remember the last time I slept and enjoyed it in the morning. Actually, yes I can, the day following coming home after my discectomy - I woke, brushed DDs hair before DH took her to school, and before he even left the house I was goofed apparantly. Woke at midday, ate some lunch, went back to sleep, woke at DD came home. In fact, don't think I ever did that since children. No, I know I haven't
Ohhh no, will sneak over for a look OYBBK
Am blessed with my friends. I used to hate missing out on stuff, but realise that I need to be functioningish for my daughter and the daily stuff. Oh and hardly drink these days as am so much worse the next day even after a beer or two.
Pavlov the planning skills have taken years to get to grips with. It must be about 12 years since I did Pain Management. What's probably made me ( most of the time ) pace myself these days, is the fact that I am a grumpy fuck and have no patience with my daughter if I'm tired and in pain. She's great at understanding that I hurt, but I don't want to inflict any unnecessary shite on her.
Ouch at the roller disco.......hoe your GP sorts out your appointment soon. And be gentle with youself in the meantime.
I've always dreamed of a room with zero gravity that I could just float about in....and a shop that sells new backs
That's why I just got on with the rollerdisco with DD, she is only 7 and has already put up with my shit being put on her, as has DS who is 3, almost 4. She got a bit upset today that I probably won't be able to rollerskate with her, and also that I might not be able to run with her (she has been waiting for me to go running with her), so I need to show her that I can do some things, and that I have made huge improvements since this time last year.
Oh, a zero gravity room! <sigh> followed by a jacuzzi cinema trip.
Well, it's clear there's a gap in the market jacuzzi-cinema -wise. Anyone got a few million to invest? I don't want to share with any strangers, mind you. Or would we still be sitting in watery rows?
Sorry that even taking your dd out has caused such a flare up pavlov.
Hi perihelion, nice to meet you. Sounds like you're a true pro in the game of backs. What happened?
I've woken to a strange mood. I keep thinking, '< what really? Forever?>' it's like it hits me all over again sometimes and I haven't really processed the information at all. Sorry. Will now snap out of self pity party.
I'm going to meet friends who have as usual very kindly taken Bertz the dog out. I meet them for coffee and a stroll after they've had a good old walk. Lovely Richmond Park if anyone knows it.
Thank god for friends and family, though not for silly DH who has gone off to golf with my stick in his car.
Have a nice gentle, pacing kind of day, everyone.
Loving the idea of a jacuzzi cinema!
I know a few people who have inversion tables and swear by them. I guess it depends on what precisely your problem is but using gravity to create space inbetween the vertebrae makes sense. Although when I was 19 I had traction for 3 weeks in hospital and it didn't help at all. Just weakened all my muscles ( and weirdly made my hair grow a few inches due to the increased blood flow to my head- every cloud has a silver lining I guess!)
The thing I think I find hardest about this condition is that it's an invisible disability. I look absolutely fine on the outside but people can't see the pain I'm feeling inside and as a result I've suffered a lot of insensitive or cruel comments from people who don't understand why I can't or don't want to do certain things. It's something I have to think about every day and has definitely limited my life ( holidays, festivals etc)
This week I am going to do back care pilates. I do think exercise is one way of managing/ strengthening the condition. I hope because its specifically about helping back problems it will make it better not worse.. Watch this space!
Just found you lot, sad there's so many, but glad for the company.
My story is..
Aged 24 I woke up unable to move and in agonising pain, no known injury, hadn't overdone it the day before, so totally unexpected.
Since then I've had blood tests, x-rays, MRI, physios, etc. And they have no idea what it is.
All we do know is that my upper spine - between my shoulder blades - locks up and wont move and is horrifically painful. The pain/stiffness spreads down my spine, up my neck and across my shoulders (I get a bump on the back of my neck when it's bad). About a year ago I started getting similar pain in both wrists, which they assumed was carpal tunnel, but turns out not to be.
It's frustrating not having a diagnosis, and I don't get any additional help because I'm not considered disabled enough, despite being unable to work.
Also find that because of the back pain being bad enough to leave me bed bound quite often I just pile on weight and then get stuck having to try and convince specialists that the back pain isn't caused by the weight (I was a size 10 when it started). So lots of "if you just lost weight your back would get better".
Like you Matilda I still have days where I wake and it hits me all over again that this is my life from now on, hard watching DS as he becomes a toddler and know that I can't run around like the other mums.
Forgot to say, am nearly 30, so feel like it's robbed me of my 20's.
Oh and I'm pregnant again, with SPD again. My body hates me.
Murder, that is a very difficult thing to deal with, so frustrating to not get a proper diagnosis as well. It sounds like you are stuck between a rock and a hard place with not being able to work but the powers that be telling you that you are. I have no answers, I've tried so many treatments over the years in the hope that something will work ( and none of them were NHS. They are rubbish when it comes to treating backs !).
to you. X
Very hard Murder the working thing is especially hard. It's a very difficult position to be in. Nightmare with a toddler. You've come to the rot thread.
I seem to have acutely set off my back today. Keep getting nearly stuck. Can't decide between seeing my osteo of long term who is pretty good at these acute phases and can usually fit me in within a day or teo or trying to see if my physio whom I've been seeing post injections can fit me in (she does 2 or 3 evenings a week in her private clinic) I've not seen her while I've been in this state before. Both cost the same amount.
What do you think?
I think if I were you I'd try and see the physio, just so that she can see you while it's that bad.
ok, will do will give her a call tomorrow. It helps that she was recommended by my pain consultant.
My physio always helps with her release massage. I try to schedule appts with her after any events that I know will wreck me.
Hope it helps.
murder, hi, your situation sounds very hard. I hope you have good support. So relieved my boys are older.
None of the physios I haves seen have ever given me massage not even the private one recently. It's probably all I need to get me back on track too
Hello Matilda and everyone else.
Matilda, I had a riding accident while working with horses about 14 years ago. Prolapsed a lumber disc and ripped my left sacroiliac ligaments. Had glucose injections ( prolotherapy ) to try to help repair the ligaments and refused a joint fusion op as the procedure was too new, not likely to help the pain and the consultant didn't want me to ever be pregnant if he went ahead.
First 2 years was hell. I lost my job and my identity. I was used to being outside, being very physical and often riding for up to 4 hours a day. And when I hadn't been working, I loved to go out dancing.....From that to shuffling about and crying at the pain of trying to get up a flight of stairs was sooo shite.
Pain management helped enourmously, as I used to sabotage myself by getting cross at the pain and carrying on, just to prove that the pain wasn't going to stop me doing what I wanted, when I wanted. Which just put my rehabilitation back. The course also helped in a weird way, because I observed a couple of people on the course who were so negative about the course and didn't want to even try the slow build up of exercises/hydrotherary, and I didn't want to end up like them. Since then, I've kept moving. V gently at first, persuaded a yoga teacher to let me join her pensioner group, walking and swimmimg. I also flirt with cycling, cross trainers and physios! For me my stomach and my bum muscles are essential to keep everything together. And not sitting for too long.
What I've found to help along with the drugs and exercise are my trusty hot water bottle, TENS machine, physio, sports massage and sensible shoes.( And laughing )
What's not helped is a chiropractor, cannabis, reiki, and twats at parties offering to give me a massage.
Not tried inversion therapy, but google The Alexander technique's semi supine position, which gives the spine a gentl lenghten. Or lie on your back, with your kness bent at 90 degrees and lower legs resting on a chair seat.
peri I think we have spoken before haven't we? I remember your story. How horrible for you. Have you managed to return to work? I shall take a look at the semi-supine position, thank you!
I have called in sick. I have been a coward and called the 'sick line' but emailed my boss, not called him. I always feel like he sounds so disapproving over the phone, questioning my legitimacy. And, I don't know, maybe I can go in. I don't hurt half as much as I thought I would be after Saturday! But, I just don't want to work and be in pain. Not today. I have had such a good run, I thought I had made such huge progress and only had one sick day since returning following surgery, even though I have had ups and downs which have made working hard. Mostly, I have got back up running (not literally!). But the last couple of weeks has been so hard. I have done my job, and I think quite well, but it has taken all of me and the family are left with the quivering in pain wreck left once i get home, and on my days off I just want to rest. DH said I need to use my annual leave better to get more break, but, I have limited leave left as some of it has been used to look after sick children since April, and other reasons not related to giving me some me time (as it usual with children, I don't begrudge that).
I really think I need to consider reducing my hours, for a little bit of time to get back on track.
As I have some time, I shall read through some of the posts from yesterday and respond!
murder oh no, how frustrating and upsetting for you to not have a proper diagnosis, and to have your weight being blamed for your problems. Surely it's a no-brainer - back pain = unable to exercise = putting on weight, and that's even before any form of comfort eating.
DH has got a new job!!! WOOHOO! it means, that I might actually be able to change my hours around without reducing them. His hours have been so haphazard that my working hours could only be as they were, but, we have been talking about me working every day, but shorter days. It means I will not get a whole day with DS on my own, but it will mean finishing at around 1-2pm every day, I get every day to collect them from school, some time to do physio more regularly, have some organisation and if I am in a lot of pain, to just come home and lie down for an hour before the kids get home. I feel so bad doing that when I get in at 6pm or later, so I don't do it, but really really need to. Then the children, and my DH will get better quality time with me.
I won't get excited as I have not put in my request yet for changing my hours.
I am going to go down the disability route to adjust my hours, rather than flexible working as a parent, as although these changes will positively impact on the childcare, the benefits for me are largely relating to my disability - how do I apply for that, does anyone know - is there a form? Do I have to go through OH/my GP? I might start an employment thread for someone to give me some guidance.
pavlov, great news! I really hope this will mean you can adjust your hours. How many hours do you work? I'm just wondering if there's any way you could have a rest day midweek. I think you have a good case for the disability route. You have a serious, long term condition. You've had major surgery and tried so hard to rehabilitate so surely they should be pleased that you are looking for practical alternatives. Do you belong to a union? Or contact OH? Maybe a letter from your GP? I would suggest your consultant but that would be ridiculous. And
way too much to hope for from the god of surgery maybe difficult to achieve. Good luck anyway and well done for taking today off.
peri, great to meet. Your story is uncannily like mine in some respects. It's hard to think of the rest of my life like this but, like you, I am determined to make the best of it. Are you working? I am finding my Pain Management course quite difficult. Like your experience I think there are some there who aren't really looking to change. Also a couple who really should be at mental health groups. I wonder if their gps referred them just to get rid of them. Honestly, one of the women is quite unsettling.
I feel like I actually know most of the course already. I have read a lot about pacing, avoiding flare ups etc. it's just sooo boring to apply to life every day. I love your list of things that help, especially laughing. I'm just not into TENs but would add alcohol!
murder, gaining weight is a massive thing to me. I lost quite a lot several years ago and kept it off. Over this last year it's been creeping on gradually. I was watching the scales going up feeling really helpless. Three weeks ago I joined Weight Watchers for the first time ever and it's working! I've lost 5lb so far. I don't need to lose a lot but it's a very personal thig, I think. Everyone there is really supportive.
scarlt hi! good luck with the Pilates. I do my back are exercises every morning religiously. Hope it helps. I would say that if you're new to it(?) go very gently and don't do too much. I have had flares after some sessions with my instructor and because we are so structured we can usually work out what caused it and avoid in future.
Anyway, been swimming and now if I don't buy food we will be having a pretty lean dinner.
I am terrible with my exercises. I don't do them as much as I should as they hurt, except when I am at the gym (that makes me sound like I am some buff fitness freak i wish!) and I find it hard to find the time, I know, I know that's shite and I have to make time, but life seems so chaotic and it's a vicious circle of too tired, too much pain, and before I know it I have stopped.
I am also incredibly impatient, and I bury my head in the sand. I have been far too much like 'right, surgery done, going to the gym, back at work, why is this not fixed now?' and then floored as it's not gone to plan. I am reading a theme from so many of you here, which is it has to be done slowly. I am just struggling so much with that!
weight has been the opposite problem for me - I lost too much weight as I was not exercising I was not hungry, codiene clogged me up, nerve blockers suppressed my appetite and I sometimes forgot to eat when DH was at work in the evenings
and I stopped drinking wine and the weight fell off me. I went from being just over 9st to just over 7st (5ft 3). I hadn't weighed myself until I had lost all the weight and 'ignored' it, although people kept telling me I had lost so much weight, i pretended I hadn't lost so much, although my jeans were hanging off me.Even my female boss at the time said she thought I had lost too much weight and to eat more! I remember when I was in the gym with my friend at the time I weighed myself I felt a little sick when I saw my weight, and my friend was at my skinny legs. I am putting it back on now though, at a rate and think, with the amount of chocolate I am now eating I will surpass my original weight .
matilda I work 25 hours a week (officially, but often around 27-28) - currently 9-5pm mon-wed and 10-12:30pm on fridays. but, I sometimes struggle to get in for 9am, so on those days I finish later (flexi is fab!), and on fridays I don't always get away at 12:30pm (sometimes on the other days I don't leave until 6pm) due to nature of my job I can't just leave if I need to make certain calls or do risk assessments. It's very much a sit down job and so shorter days would be better as I will move around more. I try to walk around every 30 mins, but it's really not practical 1)if I am in a meeting or with a client, 2)when i am doing a risk assessment and have to concentrate, losing flow of thought every 30 mins means it will take me up to an hour more to do it! And I don't get time adjustments for stuff like moving around every 30 mins. I would love a recovery day AND the additional time each day but I don't see how that will happen without me cutting my hours by a whole day - DH will work most weekends so I won't get a recovery day then either!
Hello! Pavlov flagged up this thread for me so I thought I'd pop in and say hi.
I've had back pain since I was 15 (I'm now 32). At first itxcame and went, then became constant, then increased in intensity. At 23 I was told that I have 2 prolapsed discs (L4/5 and L5/S1) and vertebr
Stupid fat fingers! I'll try that again.
I've had back pain since I was 15 (I'm now 32). At first itxcame and went, then became constant, then increased in intensity. At 23 I was told that I have 2 prolapsed discs (L4/5 and L5/S1) and vertebral degradation. After physio, drugs and a pain management course I was told they could do nothing more for me.
When I was 30, having had 2 pregnancies with severe SPD and now unable to walk without a stick or crutches, I asked my GP (a different one, we'd moved areas) to refer me again. Cue more x-rays and MRIs. I then saw a brilliant consultant (rheum, not neuro) who mentioned the recent Danish study about using antibiotics for chronic back pain. He wanted to try it before referring me for caudal injections or surgery. I was thrilled as I'd been planning to mention it!
It was a 90 day course and hefty doses. It hasn't cured me completely of course, but I would say that my pain levels have subsided to where they were 7-8 years ago, so about 6/10. However in addition to the chronic pain I do have a lot of sudden stabbing pains that catch me out. I still use a walking stick more than half the time but that's a big improvement.
I have a formal diagnosis of degenerative disc disorder, but tbh I think that's just a generic, catch-all diagnosis just to give it a name.
<waves> to puddle I am so pleased that the ABs have helped. Have you explored surgical options or are you happy enough with your pain levels to give them a wide berth?! Are you still going to have the injections or are you going to wait and see how things carry on as they are?
I have spoke to my line manager, tentatively brought up the subject of changing how I manage my hours. He has said we can discuss it and I said that I will email him my proposal and see what he thinks of it. I told him I can't carry on as I am.
I am off for the rest of the week. I feel better than I have, I think some down time was what I really needed. I feel like I need a swim, I need to get stretched a little, so I might go and do just 4 lengths then hop into the jacuzzi for 20 mins.
Who was it that said about the guy at the hospital saying not to go to the gym after an injection? - my boss said to me on the phone 'take it steady, and don't do anything to exacerbate it'! It made me think of that comment what did he think I was going to be doing, going for a run? do some body pump ?
"Surely it's a no-brainer - back pain = unable to exercise = putting on weight"
You'd think so right?
I'm missing being able to take anti-inflammatories right now, they were the only thing that took the edge off, and are obviously not recommended during pregnancy.
Pavlov Yes I think so, but I've probably namechanged.
Matilda, Didn't want to be too rude about some of the folk at pain management, but it seemed that because they were getting disability and/or motorbility, they were unwilling to improve, in case they lost any benefits. Understandable in some ways, statistics back then, showed the chances of working again after 2 years off through back pain, were tiny. Personally, I've not worked full time since and pick my jobs on the basis of not having to sit or lift. Def couldn't do a desk based job.
Don't want to give anyone false hope, but I'm much more moblie and fitter than I thought was possible, but it's been a long haul and built up slowly.......getting that loud and clear Pavlov?
Murder, what a hard situation. Have you ever been offered hydrotherary or are able to access it through a charity like Backcare? That's the first exercise I was really able to do, post accident.
Random thoughts of other things that have helped......having very low standards when it comes to housework, never ever lifting or carrying heavy things ( have become fab at getting people in shops to carry stuff to my car ), rarely carrying DD once she could walk, I always had a packet of smarties in my pocket and taught her recall like a dog . Very expensive mattress and an intricate arrangement of pillows for my legs and arms. A car seat that can be adjusted so that my knees are level or lower than my hips........oh and an understanding DH.
I have a really, really important appointment with a specialist tomorrow. It's a long drive from home so am dreading the whole thing.
Please wish me luck. A lot of stuff depends on this.
Good luck Matilda! Will be thinking of you
Peri No, might look in to Backcare though.
I hope it goes well matilda.
Good luck matilda is this related to your condition? I hope it goes as well as it possibly can. Hope the long drive is not too uncomfortable for you.
I agree with a good mattress; having had an old one, and a bed that was quite low down for such a long time we finally got a new one following my surgery along with a new bed itself and it is so much easier to get in and out of! I do too much lifting. And I hoover but I don't push and pull, I just pull lift then pull, if that makes sense? (have a henry). I empty the dishwasher too often as otherwise the rest of our small kitchen goes to shit so quickly. I have a grabber now for picking things up off the floor which is an absolute godsend. And a good shower helps! I sometimes go to the gym just to sit in their disabled seat and let the hot water pound my spine!
I miss lifting my little ones (well, DD is 7, not so little now!). I miss that sleepy snuggle when you take them out of the car late in the evening after a trip somewhere.
I am planning on taking the children to the Eden Project next week for their Halloween Monster Ball. Originally we were all going, but DH is now working so he can't come now. The kids have been so excited about it and have their costumes and everything so I won't let them down. They have disabled parking close to the entrance. They also have wheelchairs, including electric ones. Do you think, seeing as it's a lot of walking that I should take my crutches or borrow an electric wheelchair and accept that I will need to do this? Or will that be more faff than walking slowly with the crutches? I am sure the children will be good but if they get tired etc, they might respond better to sitting on my lap than being dragged along with no hands available! I am not feeling so bad I can't walk at all, the pain levels are reasonable at the moment, around 4 or 5 out of 10, but walking is aggrevating not making it better so I anticipate that this trip will see if getting worse as the evening wears on.
Loving the halloween name OYBBK I should go and change mine.
Lazy me still not changed my name!
I have bought TWO pairs of boots. Fly London boots. They are fab! and an absolute bargain
in the colours shown. Naughty. Very, Very Naughty. but I am wearing trainers and wellies and that is it as ALL my other shoes are now unwearable, apart from my converse for a short time, and then it's a pain to get them on/off.
I am soo excited about having some funky comfortable shoes to wear, it's been sooooo long!
I have been very good today too - I have asked for help in the supermarket when I could not easily pick up a 4 pack of fizzy water (this is my health drive to drink more water, by mixing fizzy water with a little orange juice as I don't really like water much), I asked for help packing, and the assistant brought the bags from the side to my trolley, told me to leave it all there and he packed my trolley back up for me! And then I had to ask someone to shut my boot
I have not been back to the gym, but have gone for a short walk and done my back exercises.
matilda how did your appointment go? positive news I hope. Hope everyone else is having a reasonably low level pain day and lots of happiness is being had.
Good for you Pavlov! (Though both those pairs look remarkably identical, I think the linking might have gone a bit pear shaped!)
I'm seeing my physio tomorrow. Thank goodness. I can move a bit better now (I can get my knickers on which is a bonus!). Hopefully she will be able to help improve things further.
hehe yes, they are the same link oops! one is that link and the other is a pair of knee high ones by Fly also, in grey, quite similar and comfy enough.
I am quite excited about it
Hello all! Thank you for all the good wishes. My appointment went pretty well, I think. Can't say much but yes, medical. Waiting for report now.
pavlov, love the boot buying we are supporting Fly London pretty well. I can even wear the higher ones. That makes me very happy.
I am also very happy you are staying out of the gym. Can you do any baby Pilates? Little roll downs etc?
Today is not good after all that driving, well lying in the car. Just had a massage and gentle Pilates. I wish you all went to my physio, she's fab. I'm out to lunch which should be a good thing but am slightly dreading. That's wrong, isn't it? But a good example of life with a knackered spine.
OYWW, I am pleased to hear you have your knickers on!!! Honestly, the things we have to put up with.
Btw, as a newcomer to mn, why does everyone name change? Is it to confuse me? I'm confused already...
Now, serious question. How are your other halves or family dealing with this? My DH is fab on the surface. He lifts and carries, shops and cooks. He doesn't complain. But. He cannot do the emotional bit. Refuses to park in the disabled bay. Doesn't ask how I am.
I'm not knocking him and have truly excellent support from friends but am curious how others have found it.
Enjoy the sun if you have it today. It's glorious (mindfulness, don't you know)
I namechanged for the halloween comp. Once again I didnt make the short list. I'm sure I'm invisible on those threads
I had a physio appt this afternoon. She used a neuromodulator which felt like a rather vicious tens machine but its taken some of the worst out of it. I've also got a lovely SI belt now which feels like its holding me together. The two combined have def helped this evening.
my dh is genuinely lovely. Sometimes he forgets when I'm feeling better and still jumps into help and I get a bit irritable with him which is unfair. He does have to be asked to do things like washing or housework. It's not tht hes lazy, its just that he genuinely doesnt notice stuff.
oywww you got noticed here! And I knew who you were ;) glad physio helped. Lots of new things for me to google though!
matilda how is your back today after your long journey in the car? How was lunch?
DH has been great at picking up the slack, he mostly doesn't moan, but he does resent it and when he does complain that becomes apparent. yes he often forgets I have a bad back and gets cross I haven't done something, but then why should he have to remember very second? He doesn't always ask me how I am either. It has, despite best efforts, taken an enormous toll on our relationship. I have changed too, less fun and happy go,lucky and our intimate aspect of our relationship has taken a battering too, this condition has tested our relationship to its max and there have been times I have worried we might not get through it. DH is as good as he can be but, regardless of vows and intentions to support through bad times, it is never in your life plan to be a carer for your partner, not til we are old, is it? And so the reality of this is harder than the idea of being there through sickness and in health. But we are getting there.
And he also needs to be reminded to do things like pick towels from the floor as he seriously doesn't appear to see them!!
I had a bad time in sainsbos today. You know what its like when you are sore and slow and everyone else seems to be on speed. Nearly burst into tears as I couldnt find anywhere to stand that wasnt in somebodies way.
Was expecting to hear 'meltdown in the bread aisle' over the tannoy
Hello all! <waves to Pavlov!>
I first started with back problems in 2006 after the birth of my first son. I had sacroiliac joint dysfunction and had to have my pelvis rotated and lots of physio. I had had a crash c section under general anaesthetic, both things apparently increase the risk of damage.
I had what I would describe as a weak back ever since. My second son was born in 2008 and I had some sciatica during the pregnancy and then needed some physio after due to my back 'going' on several occasions.
I had kind of just plundered on since then, but last year my youngest son became seriously ill and I ended up having to carry him virtually all of the time because he struggled with his mobility and was very clingy. Obviously I am not blaming him for this, but I think a year of carrying, lifting, leaning, in and out of hospital beds etc weakened by back further.
In February this year I was lifting my son off the worktop and my back pinged. I had a massive electrical shock feeling shoot up my spine and down my leg and that was it then. To cut my very long story short, I was diagnosed with a 'small' disc bulge and a torn annular ligament, spent some time in hospital with suspected cauda equina syndrome, was shouted at by a consultant that the disc bulge was really minor and he had several that he couldn't feel (nice!) etc etc. I was on stacks of tramadol, gabapentin, naproxen etc and was in agony as the teeny weeny disc bulge was actually compressing my nerve, hence the severe pain in my leg and difficulty moving. I tried so much stuff to help (including an embarrassing acupuncture session!) and eventually paid for a private referral to a top spinal surgeon nearby.
This was in April. He was lovely and said that the size of the bulge was irrelevant and that nerve compression was nerve compression regardless of the size. He booked me in for a nerve root injection which I had in May (back on the NHS). Although this was initially awful, the pain did subside greatly and I was able to wean off tramadol and start coming off the gabapentin. After about four weeks, however, the pain came back :-(
I was then put on the list for a microdiscectomy, although they were unsure if it would actually work as the bulge was so small (it didn't feel small!). Because of the level of pain I was suffering and my complete inability to be a half decent mother or carer to my littlest boy (who is thankfully very well at present) they agreed to give it a try, but they did try and terrify me with talk of double incontinence, paralysis and death. I think it says something about how much pain I was in that I still begged for the op!
I managed to get a cancellation and had the operation almost five weeks ago. The difference in my pain levels has been incredible and I am so happy I went ahead. I feel vindicated too, as apparently the disc bulge WAS small, but the nerve it was compressing was also trapped in a groove in my vertebrae, so they had to shave out a big bit of bone too. Ha! I told them it was hurting me and now they know why! I ended up having a discectomy and lumbar decompression.
I am now weaning off gabapentin and taking very low dose cocodamol perhaps once a day. I am driving again and able to move about. I do get back ache now that I didn't have before, and my leg feels a bit achy from time to time, but it is so dramatically different.
I am sorry this is so long! I feel a bit traumatised to be honest that I had 8 months of constant intense pain now that it is wearing off. It has been a really horrible time and I feel for those of you going through it. My physio thinks my nerve has been struggling since 2006 so it will take some time to recover.
My biggest tip for anyone new to this back pain business is to make a fuss! I was so British and polite and should have rocked up to A&E whenever the pain was so severe that I was crying on the floor unable to move instead of just tolerating it all and waiting for my next appointment.
Oh I dislike that. Everyone just carries on with their life and no thought is paid to the slowness of us back sufferers. Sometimes I ask a member of staff to go and get me the milk as I just don't as ant to walk to the other end of the store slowly while people barge past me on the slow days, or push the trolley into someone a million times as I can't quite control it.
Here have a bit of chocolate cake that I made. Please note that mine looks nothing like that photo, thanks to my DH breaking one of my halves into lots of smaller pieces and ruined it. Thanks DH (he didn't do it on purpose, he was trying to 'help' and failed badly). It appears to taste lovely though. Possibly I tasted too much of it though...<feels sick>
Back keeps popping. Agony after making cake as I sat on kitchen chair and then went to stand up. I screamed as my back went, and tears rolled down my face, not crying but it made my eyes water! It's now very painful, but manageable having used hot water bottle straight away (can't find my wheat belt, kids been playing I suspect).
Oh, and good news, my new hours are approved!!!!! Now work 8:30am out 1:30pm, with flexibility on my start and finish times to allow for changing pain levels, and allowing me to leave early if I have a bad day pain wise and make those hours up on one of my other days if my workload allows. So basically, I as long as I work roughly 5 hours a day, work roughly the times agreed, and keep my hours at 25 for the week, I can have flexibility to manage my cases and my hours to reflect my pain levels (I can come in at 10:30 if morning is bad that day, and either work til 3:30pm, or do those additional hours on another day). It works as I manage my own cases anyway, so I won't be leaving work for others to do if I leave early.
It's going to make a huge difference I am sure. I start this week coming, but already had Monday and Friday booked as annual leave, so not due in til Tuesday and will do my first 5 hours see how it goes. I feel much better about work now as I can a way of managing it. If it doesn't work, we will review it, but it's a start. Then, if I have god reduce my hours, I know I have done everything I can possibly do to keep them at this level.
X-posted tabitha Yey! I mascot glad your surgery has been successful! You are so so right about making a fuss, I didn't make a fuss for too long and only started todo so I with the help of lovely mums ethers who assured me I wa not just making a fuss. I still didn't go to A&E at any point and looking back at the levels of pain I was in at times I have no idea how I didn't go. I was talking to someone the other day about and said if my pain levels increased to that level straight away, or if I saw someone in that level of pain I would be going straight to hospital presuming something serious was wrong, but I think I got desensitised to the level of pain I was in and as it gradually increased over days, I always doubted that the pain was that bad, although I knew it was! I guess I was afraid of not being believed and being told nothing was really wrong! Not that it wanted it to be wrong, but worried that it was all in my head or something. Even now I worry that what I am feeling is not real, but me making a big old fuss about something minor.
How are you feeling now? I hope you are not doing too much, although I know that's almost impossible with a little one. I am so pleased to hear he is doing ok! That must be such a weight off your mind, at least gives you a little bit of time to get your family strength back up. I hope that continues.
Hey Girls, and hi tabitha,
Well, lots of things going on for everyone. tabitha, your story is horrific yet sadly so common. The NHS really does not offer good care for backs yet so many millions of working days are lost and so much misery and medication. Why the hell aren't there multi disciplinary back care clinics that offer the full range of treatments. It's ludicrous. All this endless waiting for appointments. My next one for a lidocaine infusion is in December and more injections end January. Lucky I'm not working and no longer have to explain that to my manager. It's interesting how many of us have at least partially gone the private route. I'm delighted your son is better. Is that likely to remain so? Do hope so.
pavlov, cake looks like a danger zone from here! Lucky for you that you lost all that weight and need feeding up . I am so delighted you've got your working hours sorted and so quickly. Of course it makes total sense. If you are ever able to lose the Wednesdays it would be perfect. Thanks for your openness re your DH. It's so hard. Mine has been sooo fantastic, yet I long for him to just 'get it'. As you say, he has tunnel vision and is unable to see items of clothing etc on the floor. If I groan, he still asks me what's wrong...
My back is very unhappy today but have managed my usual outing to town to buy a few bits. I have a very special friend who takes me, carries my bags and makes me laugh. What more could a girl ask for? A lovely coffee also had and managed to nab the only sofa!
OYWW, totally sympathise re horrid shopping trip. Hope you feel better and enjoy a slice of pavlov's cake.
Enjoy the weekend everyone. As the specialist this week said to me 'Keep your chin up'.
Matilda the link didn't work re the shoes you recommended. More information please- brand name etc
I would expect Holly they are Fly London boots ;) as we are fans here, well two of us at least!
I am back at work today. On my changed hours and it was hard. I am so glad I changed. But. The stinging and pain in my butt, legs and feet is almost unbearable, when standing or sitting, and walking is very painful. I stood for a good half hour, before braving sitting. My back gives way as I go to sit down, and as I get up and, as I sneeze! I have to brace myself sneezing, and cannot be stood up, or I end up on the floor! Literally! It happened in the supermarket yesterday. Very embarrassing. My boss is being surprisingly nice, asking if I was ok, if my desk needed assessing as I was standing, did I need something to raise my mouse up etc? Even made sine jokes. He has been off for a while on honeymoon following his wedding so guess married life is good for him
But, good news! My boots arrived!! They awesome, very comfy and means I can actually walk, albeit slowly and painfully.
I am fed up with sympathy though, and explaining to people, and it dominating my life. Sick of it. I can just feel the eyes on me at work, watching me do everything so slowly. I think this is as bad as the pain. Even my clients are asking what is wrong, or how I am if they already know. That's lovely but, I don't want everyone to know I am not always fully able to do stuff. Why won't this just be fixed now? I have had surgery, I have tried to rehabilitate, I have done mostly everything I should (maybe tried too hard) so this should be getting Better not Worse again. Sorry, that was a proper pity party wasn't it?
Sorry, no idea what I did wrong but not very techy.
Office website, search Fly London. I bought :
Yind Wedge Calf Boot and
Yama Wedge Ankle Boot. Both in black.
Also from John Lewis:
1 x Unisa Fitzu Flatform Ankle Boots, Black, 5
Product code :14394502
All sooper dooper comfy.
Hi,I have a condition called ankylosing spondylitis,which means I suffer from chronic back pain SIJ pain,rib pain( and many other pains) everyday.It takes me 2 hrs approx. to get unstiffened every morning),periods of inactivity make the pain so much worse and I become stiff.I see the pain management team and have a great consultant,although GP is rubbish in my opinion!
I take up too 8 codeine phosphate tablets,8 paracetomal,neurofen and special tablets for my condition every day.I work 4 to 5 days a week,8 hrs a day,through the pain and through the pain killers!(I need to work to pay for the tablets!!)because exercise is one of the best remedies for my condition,my joints are gradually becoming fused,I go to the gym 3 times a week and run most days.The hardest thing to deal with is the emotional/mental side of things-people assume theris nothing wrong with you cos I look fit and healthy,size 6-8 and go to the gym etc and am usually smiling( although its sometimes an act,to keep cheerful).I have though been waiting 8 months to see a psychologist to help me deal with and live with this condition so hopefully it will be soon
ilovewinter love your name, I do too!
I have heard of ankolysing spongylisis, is that a form of arthritis? Go you working through it! I am in awe of you running. I so want to run again but am afraid. I completely get what you mean, if you are living your life, working, exercising etc, there can't be anything serious wrong can there?
Hi winter, you sound like a tough cookie. I'm having trouble getting through the day at all. Did manage to swim, though. Are you in the uk? If so, I hope you have a prescription prepayment cert? £104 for the year.
I'm trying to find the physical and mental strength to fill in my Ill Health Retirement forms. Seems such an effort when I know I will be forced to go through some farcical assessment process then rejected.
I called the ESA helpline yesterday to find out what was going on. I stopped getting the year long contribution based ESA in August. Apparently, my name was added to some waiting list for a medical in MAY!!! I've never heard a thing. There is no way of finding out anything. It's lucky my husband keeps me fed.
Bloody, bloody beaurocracy.
Right, pity fest over. Will now do forms and ironing.
Fucking hell, the private route is a bit weird.....Saw neurosurgon today. ( went a day late and missed my last appointment ). Talked for about 1/2 hour and then he asked if I wanted my MRI scan done today......er no, I have to check that insurance will pay first. So quick! Am a bit freaked as he was suggesting that I may need an op. Mind you don't know why I'm suprised, he's a surgon.
peri wow that's called 'efficient' if you didn't have the MRI today will you still be able to have it done quickly? I presume so as it's private.
You reminded me - another good thing - I got my neuro followup for monday, after my GP kicked their ass!
Got a call from the MRI dept at teatime asking me when I'd like to come in. Very apologetic they only had one slot tomorrow, so am going in Thursday....totally fucking bonkers. Last time I had an MRI I waited 4 months and as said upthread, couldn't work and was on benefits. Mind you, back then I waited almost a year to see a consultant.
Am also slightly at something he said. My reflexes are over sensitive? Anyone else had this? I thought my limbs were reacting great, to being hit, so there wasn't anything to worry about......
On the DH front, we've been together almost 20 years, so he's seen me at my best and worst. When I was really bad, he felt utterly helpless to help me, but absorbed lots of my rage ( and weirdiness on Co proxamol ). It helps that he doesn't care about the state of the house, or if tea isn't cooked and can tell when I'm sore without me spelling it out. So if he's not working will take over all parenting duties. And I've learnt that if I'm not able to do something, to butt out and let him take charge, the way he want's to do it. That took quite a while for me to master
DH would say that I still haven't quite mastered the butting out bit!
I am not so good at the butting out bit either. I wonder what the reflexes thing means? I don't know anything about what they mean, they said mine were not responding well (weak i think they said) on my foot when I thought they were fine, so who knows how they even tell!
I waited 17wks and 5 days to see the neurosurgeon from referral, after waiting for 6 weeks for the second MRI, 6 weeks or so for first. I cannot possibly imagine seeing them more quickly - do you have private insurance then? does it cover pre-existing conditions? I have looked into private, just because I would hate for DH to suffer with something like this for so long, or for any other illness in the future, but they don't seem to cover pre-existing conditions...
Thursday is quick though
matildacat I'm so sorry you are feeling so low it's a shame there is no chocolate cake left.
I am so cross with the bureaucracy that is such a barrier to people accessing support. I mean, we are intelligent well capable women who can navigate the system, yet we struggle to access support, you matilda with a profession and a career afraid to embark on the journey of form filling because it is so hard and so difficult to get something positive from. But, there are so so many people out there who ^cannot fill in these forms, who don't know their rights, who can't navigate the system and end up losing out on so much that they are entitled to because they don't understand what to do.
I worked with someone last year who had been wetting herself for a while. She dragged her foot and had back pain. she was given painkillers and sent packing, because she was also an alcoholic, so her wetting herself was because she was drunk and she staggered because she was drunk. But, those were huge reg flags for cauda equina. I pointed it out to a key worker who got her an MRI via her GP. But, she didn't know to fight before that, to ask for help, because she had learning needs (but not meeting the score for adult social worker) that meant she just did what she was told. She finally accessed the right support (but the damage to her leg and bladder was irreversible).
I fucking hate pain
I promised my boss i would be in tomorrow. well. i didn't actually promise. but as good as.
Why am I hurting so much? [argh] Fly boots and surgery would fix it, so you would think eh?
Oh, yes. Private is different indeed. Oh for insurance. Think I may be uninsurable now, though. It's f*ing expensive if you self fund.
I haven't a scooby how I'm insured. It's through DH's job. We pay to have it ( a lot, nearly cancelled it for this year ). Last year when I was sore I and wanting physio, I was convinced that I wouldn't be covered, but when I phoned them, they weren't bothered that I had previous issues with my back. It may help that I've not been for my pelvis, but other bits. I imagine as it's really geared to keeping employees working ( for an American company ) that the cover is better than anything I could get as an individual.......Still quietly panic when I have to give credt card details to the private hospital in case the insurance won't pay out.
1 consultation with the neurosurgon = £320
Oh yes, that's the going rate. £300 consultation, £1200 for MRI, £910 injection. End result? Nil, zero big fat nothing. Pain stays the same.
pavlov, when did you say your appointment is? Is there any way you could get your GP to get you an MRI first? Something's not right, surely?
Ladies, I will not get depressed. Just had a slow ramble in the park and god, it was beautiful. Can't do the mindfulness/ meditation CDs. Getting out in the open does it for me. (And tramadol).
It's my lovely dad's 80th birthday today. He's fitter than me! He's fantastic, though. Also have a friend's 50th dinner tonight so now resting obediently. Will get the dreaded forms done later...
Have a good day. Hope the pain is not dominating today.
Office online, purveyor of the wonderful Fly London boots have a one day sale of 20% off plus free delivery!
Don't say I didn't tell you.
Didn't look at the Office website, have enough boots. Comfiest ones for winter I've found are Pajer Grenland ones. First pair were v expensive, then realised that I could buy them in the summer on the Amazon US website and get them delivered to Sister in law, who sends them on by slow shipping as used.
MRI done and back to the Neurosurgon in a week.
Well, haven't had a brilliant few days. This, however, made me laugh like a drain, so sharing with you.
Hope you are all feeling as good as possible.
peri, what does the phrase 'I have enough boots mean'?!
Just wondering if anyone has any tips for those times when your back goes into spasm? I've had occasional low back pain for years but recently developed bad sciatica, had physio and now waiting to see orthopaedic Surgeon.
On Weds I lifted something awkwardly and now the opposite side of my back has gone and I can't stand up straight. I've tried heat, ibuprofen gel and some stretching but I'm bent at a 45 degree angle unless I lie down!
I'm taking ibuprofen already don't have anything stronger except some tramadol which gave me a spectacular migraine last time I took it.
Anything else I could try?
Hi pumpkin, for me it would be lying down with pillow under knees! hot water bottle and drugs. For spasm your GP should prescribe diazepam. Out of hours would prob do this. Obviously you also get up and move around but resting more likely to relax the muscles.
If ibuprofen not working and tramadol no good GP can give you cocodamol but if you aren't used to it it makes you spacey.
If you know someone and can afford it an expert massage might help. Not the type you get in a salon.
Hope that helps. Btw, if you need spinal surgery involving discs, nerves etc, go to a neurosurgeon rather than orthopedic.
Co codamol,( solpadine ) helps. Can get it over the counter for lower strenghts or on perscription. Also a TENS machine. And try lying on the floor with your knees bent at a right angle with the lower legs supported by a chair seat. Alternating heat and cold can also help.
Hi thanks all it's been bearable today with lots of rest in between a few essential activities. I'll try and get some better painkillers tomorrow (our nearest OOH is 30 mins drive! Couldn't face that). I've taken cocodamol before after surgery, remember that floaty feeling! I had diclofenic (sp) once before so maybe that would help.
My GP referred me to the orthopaedic surgeon so I assumed that was the right direction to be going in. Appt is week after next so I'll go and see what he suggests. Physio doesn't think it's disc related, possibly facet joint.
Got to try and get into work tomorrow if I can, which is rubbish but I'm covering two jobs atm and no-one else is trained to do either. A whole other thread!
I've just looked at difference between Neuro + orthopaedic. I dont know why GP didn't refer me to a neurosurgeon
Trust me. Neurosurgeon and only consider surgery as very last resort. I am a testament to failed back surgery.
Anyway, hopefully the ortho will do MRIs etc so you will have more info. Hope you manage your day tomorrow.
matilda that link of the dogs and cats has just had me in hysterics with the children! one of them looks just like my cat! I am sorry you have had a bad few days, how you feeling now?
How is everyone else?
pumpkin re what to do for back spasms! I would second pretty much everyone Matilda has already said - especially diazepam. If you'd not have any now get some from your GP. It is brilliant stuff to have in your emergency box. My GP gives me around 14 x 2mg at a time, and that lasts mea round 4 months, I take them when I am at my absolute worst, and when p my back just won't stop spasming it's the only thing that works. I take between 2-4mg, twice a day for a couple of days, and it makes such a huge difference. Prior to my discectomy my muscles spasmed at this drop of a hat to the point of not being able to walk with crying out in pain. If I took it immediately, it would mean days for recovery not weeks.
Also heat and ice, a shower with heat up and directed at your back if you can get in the shower.
Re ortho vs neuro. I would agree with Matilda as you have sciatic pain. If your physio thinks facet joints then that might be why you are seeing a ortho, but, how does he know that? Have you had an MRI scan? The ortho will likely refer you for one anyway so it makes sense to have that done first, so it can highlight if it's the nerve being trapped/disc or not. Then, if it's facet joint problem you can have a direct injection into the joints to work ou for sure if that's the problem. The thing with neuro, is that they are usually trained in both neuro and ortho surgery so it makes sense with your bing sciatic pain to send you to neuro.
I have seen the neuro. He is not happy disappointed is what he has said. I think his pride was damaged as the surgery appears not have been fully successful He sat there with his arms folded all cross that I was in pain, like it was a personal attack on his skills when I walked in and sat down! It was very funny actually, he was all puffed up like a peacock!
The first thing he said was that he didn't need to ask how I was, as that was pretty obvious as I was hobbling! He said immediately that I need another MRI as something is not right.
He suspects the disc has re-prolapsed. He said that 1:20 re-prolapse but because there is a slipped vertebrae, this is probably higher for me. He also said that if he is right and par of the disc has squeezed back out, it's probably better to just take the whole thing out, especially if the vertebrae has slipped further, but even f it hasn't chances are disc will prolapse again. BUT. If it is not re- prolapsed disc, or, if the vertebrae has not sipped further then there is unlikely anything eye can do to fix this surgically. He was very honest about that, although he said he could not say what is accusing it if not the disc, because the suspects the disc. He was to unsympathetic, just that if not disc or vertebrae related, then it is not surgical and not his remit
He did say that if it's a disc, then that short space where I was doing well is achievable again, he said that at least I know he can fix me again, hopefully for longer than 2 months. He ended by saying he was hopeful that he could fix it, if I wanted him to. So it really does me he thinks it's the disc again. But won't commit to that.
So, here we go again. Although this time it won't have to wait 18 weeks to see him again as if it's the disc he will probably just put me on his waiting list for surgery !
Oh, and I was particularly disappointed that he did not examine me...I had my nice pants on
Oh pavlov, sorry to hear that. Even when you know something's badly wrong it's still really hard to hear. I hope you don't have a stupidly long wait for the MRI. I would guess you will need to see him again to discuss the result. I had to phone the secretary as soon as I knew the date of the scan. Surgeon had told me to arrange to see him two weeks after scan. Guess what? Next available appointment was ANOTHER 8 weeks. So a gap of 14 weeks. Gave up and booked it privately.
One thing I might suggest after seeing him, is to ask for a second opinion. In this kind of situation this is perfectly reasonable. Going for second op carries even more risks with scarring etc.
I know you've really resisted much medication but maybe you could allow yourself the 'luxury', now you're official. Might help make work more bearable, too. How are you finding the new hours?
Finally, so glad you liked the clip. It summed my two up perfectly.
Wow, so many typos on the iPad! I meant to say he was not unsympathetic, not that he was unsympathetic. He was actually very honest and appeared genuinely bothered for me that it was not all ok. He was just very clear about what he could and could not do.
I am in agreement with second opinion as what he is suggesting is, if it is indeed prolapsed again, is to take the whole disc out. And that means fusion.
Basically what I took from this appointment is that. Whatever outcome, I am never going to be 'ok' again. He said that fusion will probably mean back pain will remain but no sciatic pain. Or. No fusion and the back and leg pain remains (whether I chose no surgery or he can't see a problem with the disc, I mean fuck knows what the problem is if not disc but it ain't getting better).
It's hardy to say yet about new hours as I had Monday and Friday as annual leave, and this week we are on strike tomorrow from midday to Wednesday midday so won't be doing a full week. But I worked much harder and felt more productive today knowing that I was not going to have to drag my sorry arse through the day. Just hard to do all my work in 5 hours. Once I am back on top of my work I feel positive it's going to work better.
But...a colleague in my team is off with suspected disc problem poor thing she looked in so much pain when she came into work. She had been off when it first went, then returned for a couple of hours before going to medical appt and didn't come back. Off for other two weeks. So boss sort of begged me to stay. No pressure or nothing.
Hi all thanks Pavlov for your advice as well.
Sorry to hear you may need further surgery.
I haven't had an MRI or xrays or anything yet, physio presumably didn't know for sure but was just his opinion I suppose. I went into Dr today to ask for something other than tramadol and was offered a phone appt tomorrow lunchtime so earliest I will be able to get anything is tomorrow night. Bit upset about that but the surgery was heaving. The spasm has eased quite a lot though it's now a niggling pain that is manageable but still all consuming iyswim.
Working today was difficult as so uncomfortable, I had a lie down on the floor in an empty office at lunchtime, luckily no-one came in
pumpkin is there any chance you could take a couple of Days off work? I am sure your doctor would advocate that with a sick note. Then you can rest as much as you need and give your body a chance to recover from this episode. I know that's not easy and I am very lucky getting paid full sick pay, even then I hate taking time off work but sometimes it's the only thing that will help, slobbing, not thinking about much, taking high doses of painkillers and not being responsible for a thing(til kids come home!)
Is it bad that codeine doesn't do much for me in terms of head spinning these days?
My ds is currently crying his eyes out because he wants to wear tights. I threw out his baby tights last year as they were too small, he is devestated. I thought at nearly four he would have been indoctrinated by now into the 'tights are for girls' brigade(not me I hasten to add) but it seems not, so Yey! Ah he is notorious at taking his shoes and socks off in the car even if freezing out.
I feel ok today, pain levels reasonable, mentally thinking fuck it and just getting on with stuff. I am not going to stop the cross trainer or swimming and will tailor my Pilates to at home for now, but I have to keep moving. I can't let this dominate my life again. Well, it already is but not so much, you now what I mean. I don't want to take the drugs. Bt I accept I need to so will take some when I finish work if I am in too much pain, but not at work. Codiene makes me talk too much!
I hope everyone is having a low pain day and that it beings some happiness to you all.
Come back those who are absent and let us know how you are doing!
Pavlov my head's not even slightly spun from codine for years .
I really relate to the talking too much! Full dose of codeine and gabapentin and I can chat for England .
Had a weird and embarrassing episode at The Pain Group today. Suffice to say I have been offered one to one psychologist from next week..better out than in? We'll see.
I genuinely will try to post something cheerful soon. Trouble is I think I have just had it with putting on a brave face.
matilda oh what happened? Are you ok? It's ok to use this space as a place to vent, and if you are not feeling positive, please don't feel you can't share, I moan with the best of em, you ain't got nothing on me
That applies to everyone here too, we all have some pretty shit days, some even more shit than others, and one thing we can do well here is hand-hold, some of you lot have held me up through some tough patches and let me be so very negative without making me feel shit. If we can't share with out fellow back pain sufferers without understanding, god knows we can't share with others.
Talking of moaning - I am in soooooo much pain! Completely and utterly self inflicted, but for a good cause...I was on strike on a picket line. And you would never ever guess how much strain on your back carrying a wooden placard can be in the wind. 3 hours of standing, a little bit of sitting, some walking (too much coffee), followed by fire works at a friend's house and trying to manage the children while DH did the fireworks with the other men, I am sooooo sore.
High dose of codiene, not even high. I think it will be a very good time to crack out the diazepam as my muscles are very definitely unhappy. And I have to go to work tomorrow as on strike again in the morning then in for 1.5hrs. Even if I have to drag myself in.
But, way to go the Millitant Me!
more like a middle class strike, more fairy cakes, less singing protest songs in the faces of police officers
pumpkin how did the GP go telephone appt go?
still here, sorry it's so shit for so many at present I hope your mri appt comes up soon Pavlov.
I'm currently struggling with work trying to remove my "reasonable adjustments"as they don't fit neatly into our new hot desk system. They sent me back to occ health, it seems hoping that occ health would back them and occ health have recommended extra measures and that I should have the same set up at home.Now apparently with a director to decide as they are worried about the implications across the organisation.Sod the equality act etc only in local government. could a neat office be more important than keeping disabled staff in work.
Matilda, I can't think of a better place than a pain management session to let the anger out.I often feel like kicking something (except it would hurt too much ). I try not to dwell on the future as it's too bloody scary I find these days a lot of my anger is coming out in sharply worded e mails about the bloody chair fiasco at work which are starting to make me look like the crazy lady
* Matilda* def better out than in....because holding stuff in can add to the tension in your body....sorry that sounds a bit hippy. Sometimes it's shite at the time getting all the emotional stuff out, but it's much better long term.
Gentle hugs and hot water bottles to everyone, am sore too atm for no reason I can think of apart from maybe the cold wet weather?
<waves> Sorry you are in a lot of pain peri. <passes hot waterbottle>
My pain is reasonable, apart from a horrendous cough and sneezing due to a bug which is causing huge amounts of pain as I cough and sneeze. I am doing this 'aaaa<braces myself> choo-AWWWWW' each time
Hope everyone else is ok.
denial sorry also to hear about your shite public sector employer. It's illegal! the twats. Sorry but it makes me mad that some orgs think they can just not follow the letter of the law and protect their fucking hard working staff.
Hey folks, I'm about to go to bed. Just posting so that I can easily find you guys tomorrow.
Short story is that I have Scoliosis, had Harrington rod and spinal fusion in 1991. Rod is now broken and for the past year the pain I suffer has increased and never lets up.
Acupuncture has given me some respite in the past. I'm scared to go at the moment in case it doesn't work. I'm not ready to face that. Irrational I know.
I also have an appointment with a Scoliosis specialist this month. I think I was referred by Orthopedic Surgeon in March. Again, what if he tells me that this is it?
One of the worst things is that when I stand up, it takes a while to straighten. I am determined not to walk with a stoop but I just can't help it.
Ach well, like I said - I'm off to bed. Will check in tomorrow and properly read all of your posts.
Hi yama welcome <waves>
Sorry to hear your fusion has now messed up. Is that usual? Does it have an expected life span? Do you think they will want to replace it, or are you worried they might say they can't do anything else for it?
What things do you do to help ease the pain? Do you techniques that you use that work?
Yama, that has been a long wait for you. I'm convinced that shorter waits would save the nhs money, back pain puts you into unnatural postures and that must increase the impact across your back, knees etc.
I seem to be paying for an active week over night / this morning. Youch! I don't seem to be able to break the cycle of using painkillers to manage things that I shouldn't be really doing and then ending up with a bit of a back crisis. But when I'm doing stuff, mentally I feel so good and its a balance between physical health and mental health.
Hi everyone, OMG, your rod has broken, yama? How awful! I do hope they can fix it. I guess that over the years the muscles and other tissues must grow around the rod so are all affected. Ouch.
Denial, your office saga just about sums up the attitude of the public sector. Utterly crap. How can it not be better to have you comfortable and productive? How???!! Have you gone to hr, union or whatever?
I've had a bit if a crap week pain wise ( I seem to say that quite often). I've no idea why but yesterday friend suggested it could be linked to my mini breakdown which I guess could be true. I start my therapy/ counselling on Tuesday so must tell her that so we go gently. I'm quite nervous which isn't at all like me. I'm afraid, I think of letting go of something which is too big to contain. I don't think I can keep it contained forever, though...I think I'm lucky to get offered this opportunity so easily. I know there are long waits if you go via the GP. I've also met this woman before and like her. She's a doctor/ psychologist so hopefully knows what she's about.
We had a big dinner last night for my dads 80th birthday. It was lovely and I did hardly any of the work. It's sad I can't even cook a big dinner. Well, I could but would suffer. I peeled spuds for about five minutes before I gave up. My two boys were stars with clearing up.
Am off to join my lovely friends now who are walking my dog (friends's partner secretly loves my dog!) and I will meet them for coffee and stroll in the gorgeous autumn sun. The colours are stunning.
Have a great day, comrades (pavlov the militant striker!!!!)
Thanks Pavlov and OYBBK. I got a lie in this morning and actually feel a lot better. Touchwood.
I don't know about lifespan of the rod. When I had my operation my Consultant would answer any questions with 'Refer to the pink booklet.' The pink booklet was a piece of A4 folded so was pretty useless. I do know that my operation was being phased out at the time (1991). My surgeon was close to retirement so stuck with the traditional op.
My guess is that 2 pregnancies have wreaked havoc and I'm paying for that now.
My fear is not so much that there is nothing that they can do, it's more that it's going to get worse and that there's nothing they can do. Does that make sense? I'm coping with the level of pain at the moment. Any increase could impact my ability to do my job, parent my dc etc.
Hi Matilda - my dh was reading something recently that said that the biggest cause of back pain was stress. I know myself that when I am on holiday from work my back is better. Obviously, we on this thread have an underlying back problem but stress is sure to make it worse.
hello to all of you
I am not in any way close with my back pain to what you are suffering but being putting off starting some exercise to strengthen core muscles for ages (I know this IS silly)
I work in the office, drive up to 2.5 hours every day commuting, i got a god - that at least forces me to walk!
I feel for you poster PavlovtheCat - standing around and in cold makes my back much worst, I now involuntarily am always wriggling, rocking moving as stiffness creeps on quickly if I stand still
I would never be able go to a concert or a wedding where there are only standing places. I wear hat on my dog walks already as I feel much better when I am warmer
Bumping for the horridestmother.
Sorry antimatter, you're going to have to do it! Those core muscles will thank you by supporting your lumber spine. Two hours commute sounds brutal. Can you get a few sessions with a physio? I bet a good one could come up with some ideas for you do do in the car even.
I love my dog, too but haven't promoted him to holy status yet!!! Good exercise though .
I went for third of 7 sessions of acupuncture and chinese massage I have started last week.
My Chinese doctor told me that the right side of my back is quite bad (I didn't know which side was worst ) and do I feel any improvement. I think I do but I will be looking to get physio end of Nov (I have private insurance through work).
But I can't compare myself to you guys as I actually managed first session of c25K last night - had sore back whilst running and my calfs were killing me but I thought after reading this thread that I really have to get seriously active as I feel not only my fitness getting worst lately but actually am beginning to be used to pain which is just bad if I can still do something about it.
Yoga did wonders for my flexibility and I need to find good teacher again.
I changed the way I hold driving wheel - when I am steady in 70 mph and no overtaking I am holding the bottom of it with both hands. I use to hold top all the time. Making this small adjustment made huge difference.
I also bough myself something of this shape
it eased neck discomfort
it is made out of memory sponge, I think I got it in Lidl about 3-4 months ago
core muscle work is def the key to helping stabilise dodgy backs.
Exciting pillow link antimatter!
The one that has helped my shoulder is: this one
Hi Have just found this thread - my story is scoliosis diagnosed aged 10/11, monitored regularly through my teens but the doctors at the time decided an op was too risky, so that was that. I've had constant back pain since then, until almost 6 years ago I went to stand up and couldn't walk so immediately made an appointment with an orthopedic specialist, and after x rays, MRI, physio etc for about 6 months, finally saw a neurosurgeon who said 'wow, this needs surgery'
I live abroad (Europe) and although we had insurance, they wouldn't cover pre-existing conditions, so although we had paid to see the surgeon privately, he put me on his NHS equivalent list, and operated a few months later. My spine is now fused from T10-L5 so I can't bend, twist at all, sitting, standing, walking are all extremely difficult, in fact being upright at all is very painful, I'm only comfortable when lying almost flat, so that's what I do most of the time. One leg is now shorter, so I have to have one shoe built-up, and can't wear anything with a heel (I had to throw out bags and bags of shoes!) and I can't walk on anything uneven like grass or sand, as my hips and pelvis are also fixed as a consequence of the op.
I don't take any medication, as my stomach is knackered from all the drugs I had in hospital, and as my condition is now permanent and never going to improve, I don't want to spend the next 30 or 40 years on tablets. I do have 'medicinal, muscle relaxant' wine most evenings, which my physio is very happy for me to do!!
Fortunately my husband is very supportive, and now does the majority of the housework, shopping etc - I can drive, but it's very painful so I only go locally and when I really have to. I work for myself from home, so lie almost flat with the laptop propped up on my knees - although I have just got an electric bed in the living room, so I can raise myself up a bit and stay supported - I also have a mobility scooter which I'm experimenting with, as it's a nuisance to always have to take the car for short distances
Anyway, I'm quite resigned to my situation now (it hits me sometimes but most of the time I'm ok), it is frustrating though as my situation is so unusual that people find it very difficult to understand
I have started baking a lot in the last couple of years, as it makes me stand up when I wouldn't choose to, and makes me feel I'm achieving something, some of the time!
PS, my op was necessary as the vertebrae had started pulling away from each other and my spine was unstable and ready to snap (in neurosurgeon's words) so he's not terribly interested in my pain, just points out that I'm not in a wheelchair, so I should be grateful for that!
Hi mabelene, wow! you have been through it. Glad you've found us. It's a safe place to moan. Impressive that you don't take meds. All I seem to do is increase mine.
anti, loving the link!!! 'of course licking the baby is safe'!!!! Hahaha, I love funny translations. The pillow looks pretty hardcore. Fortunately my neck is fine.
I had my first counselling session today. It was fine. Basically a planning meeting. Next time will get tough as I will be going over everything that happened. We've scheduled several more appointments over the next few months. I'm a bit like Mabelene, I'm ok mostly but then it hits me. Apparently I'm very good at distraction and displacement activity. The strength of my antipathy to one particular key figure is quite shocking, though.
Thinking of you all. Especially those struggling with work. I finally sent off my ill health retirement forms today. It's taken me months, denial again, I guess. Shall we take bets on how long it will be until they refuse?
I see we're about the same age Matilda, I don't have any kids, just lots of animals I can no longer swim, but I do pilates exercises in the pool when it's warm enough (won't be in again now till about April) and I am lucky enough to live somewhere where it's normal to have our own pool. I use ice packs when I've overdone it, heat just causes my back to spasm even more
Good luck with the therapy, and the medical retirement
my pillow is all soft made out of memory foam - no wood inside!
this one in the link is real hardcore!
but the translation is funny!
Mabelene - big hug to you (as long as it doesn't hurt )
It's funny you should say that anti but we do lots of hugging and kissing to greet people here, and as I can't bend even a little bit, it can be quite awkward - I feel it looks like I'm waiting to be treated like the queen!
Depends in which country you are. Some nations are more sympathetic to back pain than others
Mabelene - I'm really sorry that they didn't operate when you were a teenager. Were you in Britain? They've been doing fusions for decades in Britain. My procedure (using a Harrington Rod) was being phased out in 1991. My curve was 72 degrees.
I'm having a medicinal wine right now by the way.
Yes I was Yama but actually, thinking about it, I would just have had many more years like this, so at least I had my teens, 20s, 30s as a 'normal' person!! I have never been an adrenaline junkie but I did do lots of things I shouldn't have, in retrospect
I'll try and post my pre and post op x rays, if anyone is interested
Ok, I think they should be visible
Hello all, I have lurked on the spooners thread, but haven't seen this thread before.
I am still waiting to find out what is causing my back and now sciatic pain. I have been seeing an osteopath since my back went kerplunk a week before the holidays started. My MRI is on the 25th.
The osteo thinks there is nerve damage. Which is nice. All sorts of referred pain - acupuncture on my back makes the sole of my feet feel like they are being scratched. He tried to put a needle in today and it felt like a bloody wasp sting. <cries>
Apart from the terrible pain and the sad feeling that I am failing the children it is all fine.
SconeForAStroll - you aren't failing your children!
you are trying to get better and that's what's most important now
Wow, Mabelene - you have some serious metal there.
I don't have my x-rays. My curve is more severe though and the operation in 1991 when I was 15 has worked to an extent. I've had a fairly normal life. I've just always had to be mindful about not hurting myself.
At 37 though, I am suffering. However, I do believe my pregnancies made things a whole lot worse. We'll see what the Consultant says next week. There is only one Consultant in Scotland who deals with adults as well as adolescents. I have finally been given an appointment.
I thought of you when I saw a couple of office chairs on this page (scroll half way through the page to see them)
hello just barging in because I'm wondering at what stage do you go to the Dr with back pain
I've never had it in life until now
Woke up on Friday with acute lower back pain, below bra strap but above waist of jeans. well controlled with regular cocodamol and ibuprofen but hellish when they've worn off and first thing
I've had a cricked neck/torticollis before and it feels like that but in the wrong place and seems to be a lot of spasm going on
otherwise well and nothing radiating into legs.
Any suggestions anyone?
only a very quick post to say hi all and hope you are all well and to say scone I have felt that for such a long time, I go through such anxieties about failing my children. And the wonderful people here have helped me to realise I am not. You are not failing them. This is not your fault. It's a shit aspect of life chucking a curve ball our way and our children will be stronger for it.
so i convince myself everyday
I will post more later. Off to work. Late. Very late. Oops.
tweety go now. If there is nothing more than pulled muscle or 'mechanical backpain' they will give you more meds and you can come here for more support about how to manage the pain, but then it's at least recorded, so if it continues you have started the process. They won't do a thing until you have been suffering for at least 6 weeks, so don't wait to see them as if it gets worse not better they will start that process from when you see them not when the pain starts. Sorry I can't post more to help with pain, as late late late! But I will later, or someone else will come and give you their tips.
Positive painfree vibes everyone!
I had a couple of episodes of back pain which I didn't 'trouble' the doctor with. Then one day I woke and it had truly 'gone'. I could barely move. I saw dr the same morning. She did some very basic tests, said it wasn't a disc(um, I now know differently), and gave me cocodamol, naproxen and diazepam.
I think if you've had it a few days you should go. Heat helped my spasm tremendously but only temporarily.
anti, wow! loving that chair. There's a few on this thread suffering in the workplace. Maybe they should suggest one. Especially in fuschia pink.
mablene, glad you have your animals! they are company when you spend a lot of time alone. My dog is with me now. Do you have good friends where you are? Mine have really saved me.
I really don't want back pain on my GP record though I'm a SAHM right now but I'm a nurse and I was hoping to go back to work imminently - just did my CV last week and ironed my interview dress and everything.
I chatted to you about your back under another name a while ago.
I'm just mystified. I haven't injured myself at all. I did sit in a hard chair for a loooong meeting the night before it started but I can't see how that would cause pain lasting this long
No, I didn't 'do' anything either. At least not the. Maybe 30 odd years in nursing and midwifery just caught up with me. Did we chat about ESA? I can't cope with name changes! Do you have a specific job in mind? I know how much things have changed, but no getting away from just how physical nursing can be.
Can anyone explain to me how to view mablene's X-rays?
tweetytwat - your best option is to go to and see recommened osteopath
(if you live in Surrey/South London I could recommend mine)
injuries like yours are of the kind where your body copes with some small changes in how you use your muscles until (it may be stress or tiredness) it flips over
you will recover but it is going to take time, with helps of osteopath it would be faster
I can recommend this:
esp variation#2 - you can lie on the carpet or a blanket, lifting legs like that would ease pressure on your lower back, let yourself 10-15 min and see the difference
also sleeping with a pillow between your legs helps to rest your back better:
My surgeon said I had about 10k€ of titanium - sure will be interesting if I ever go through an airport scanner (I haven't dared fly anywhere since my op, I can't bear the thought of hanging around the airport, actually sitting in an aircraft seat, turbulence etc - much to my husband's dismay) and I have joked that I'm worth more in scrap so if things get tough he can have me melted down.....
I hadn't done anything specific the day mine went either, just a build up of years of the pressure of the scoliosis (although I had stacked a tonne of logs a couple of weeks previously!)
I do have some good friends here, thanks, plus my parents about 5 minutes away!! I had to have an emergency hysterectomy about a year ago and one friend made dinner for us nearly every night for weeks while I recovered - we didn't ask, and actually my husband does most of the cooking anyway - but she just started ringing him to say she had fish pie or whatever ready for him to pick up!!
If you want to see my x rays, click on my username to go to my profile and then click on my photos
That pink chair-bed looks brilliant - exactly what I need
I got a glass of water from the tap. Living on the edge that's me.
I would go to the doctors as well tweety but if you are in or near South Warwickshire I can recommend my osteopath.
Don't worry Scone I'm an extreme case, you only see that sort of metalwork in scoliosis or accidents - it's strange but I never really gave it a thought, I had a pronounced hump on one side but it wasn't that obvious in clothes, and I just thought everyone had back pain all the time so just carried on regardless. I think that's why I get away with no medication, I've never really known any different, so it's normal for me
Must admit I have heard mixed things about osteopaths. People who 'put their back out' seem to benefit from the clicking it back into position approach. Some do the massage type approach, which I would be ok with. A really good physio is more my thing, though. Can recommend mine in SW London.
tweety I second the GP route and getting it on record. If you need to get referrals for MRI scans etc it will help.
I like the link above, I am having a session with an Alexander Technique teacher tomorrow as part of Pain Management. I always have a pillow under my knees, just do it automatically. I'm really interested to learn what it is about. I've done Pilates for years, is it much different?
wow! you lot have been nattering a lot
My top tips of the day for managing back pain before reading all the chat:
steal your child's hot water bottle, prop yourself up with multiple pillows, tuck water bottle in the base of your spine, bend knees upwards with another pillow or three underneath.
Open box of boozy cherry chocolates that were meant to be for Christmas, eat the entire lot while MN'ing.
OK. So, it doesn't stop it hurting, but man those chocolates are good and the heat is lovely
Good tip Pavlov. I'm on the peppermint tea, dark chocolate and feet up remedy this evening.
I have also just realised that I haven't helped dh with clearing the dinner dishes all week.
Pavlov, you can move into my place! I've got exactly the set up you describe all around the house. I call them my nests. As comfy as it gets...don't fancy the chocs, though. Maybe a G&T?
Finding myself on MN too much. Any tips for cutting down. Can't help feeling I should be reading a good improving book. Or ironing.
I'm going out. Yippee. Hardly ever do so looking fowRd to it and know the place well and it's pretty comfortable. Have a good evening everyone.
I know some osteopaths are terrible, but with acute pain as tweetytwat is one I visit would just massage and help to relax muscles
Well still in pain today but well controlled with the painkillers but bloody hideous when breakthrough happens and it took ages to kick in today.
I have found a local osteo recommendation - I'm up north so that's in hand if I decide to go for it. I was going to try to get some NH work, was in a desk job
for a well known helpline which has been destroyed recently for last few years before the children so not done hands-on nursing for a while.
matilda I am heading down now, the removal truck will arrive at the weekend it contains mostly pillows!
re: osteos - the only two I saw were fucking useless. Well, no, that's not true. One said immediately it was my disc, and he was right. But he wouldn't do any massage, manipulation or anything, although he did try acupuncture. He also told me that mostly my stress levels were causing it and I should do CBT to get a grip. He passed me to a colleague, who ordered an MRI and gave me a caudial injection, but still not massage etc. injection worked for two weeks. But, it did work, and it meant they knew it was most likely the disc/nerve.
My colleague, in my team, has been signed off for a further 3 weeks with back problems. She has been off for 3 weeks so far. It is suspected disc problems, but I heard rumours she had cracked some vertebrae without knowing what caused it so they are doing tests. Oh Dear. Poor thing. Despite me getting not a huge amount of sympathy from my colleagues, who were largely pissed off at me being off for so long and being there so randomly, who barely mustered the energy to get me a card post surgery until 4 weeks later when another colleague got a card sent when she was off sick (and they realised), I still can't help feeling sorry for her and wondering if there is anything I can do to help, send her a card to cheer her up, some flowers etc.
<waves> to all the new ones.
How is everyone's pain level today? i hope on the lower side. mine is about 4/10. I am not sure if the pain increases by the evening, or if my tolerance to it reduces. Either way, by 6pm I am tired and in pain and fit for nothing. Does anyone else suffer from poor energy levels? My back pain is worse at night. My back pain is worse than my leg pain, which is present, but bearable. It makes me think fusion wont work for me.
I am working my new hours. So, 8:30-1:30 I said yes? Let's try, Friday last week 8:30-2:15pm, Monday 9:am-5pm, tuesday 9:am - 2:15pm, wed 9:15pm- 2:30pm, wed 8:30-2pm, thursday 8:30-1:30pm (yey a normal day!) and today, swapped my morning for afternoon as there is a case I need to see and no-one is around to do it for me. So, not working out so far! I am leaving earlier today but not hugely so. But, I am getting the children from school/preschool. I am not less tired, no time for my physio, but I am at least being with the children a little more, so by the time 6pm comes and I need to crash on the sofa, they have not only just seen me for an hour maximum.
funny you should mention energy levels Pavlovthecat...
the more stiff and in pain I am in the less energy I feel have
luckily my job is one I can leave nearly on time, I think being delayed to leave often means I am very stressed and that makes my back sore
My osteo is v.good Pav, ultrasound, acupuncture and gentle movement in each session. He is the osteo for the RSC as well.
Back still shit though
Is there anyway of getting your hours sorted?
scone yes re working hours, as of yesterday - Working to Rule (industrial action). Well, apart from today where I am changing how I work, but still only my hours technically though working to rule means I should do my hours at the right time and if there is noone to cover, tough. But, in reality, I just can't do that. The person I need to see is likely to be very angry about a few things, it's a friday and might generate more work, I can't do that to a colleague.
I probably need to see a private osteo. I saw mine through primary care route on NHS and he just ticked boxes mainly. I really need a good massage. Just because it will be lovely at the time more than I think it will fix anything
I am still in bed. I have had to do some chores online (bills, not shopping!) had a bad night's sleep, back hurts and I am hoping if I stay in bed long enough DH might bring me up a cup of real coffee not the instant muck I have had a cup of already I don't think it's going to work, he has been back from the school run for an hour and no sign. My stomach is rumbling, so i need to get something to eat. Toast is definitely too much to expect...
Hi all. By coincidence, after anti's link on Alexander Technique we had a teacher of this running a session at my Pain Management group yesterday. Well, whilst clearly not a cure for injuries like ours, it sounds fabulous. We did a lying down activity just like this
It's was great. Even the most negative people in the group loved it. What's not to love about lying on the floor twice a day? Do try it with the guided talk on.
Anyway, as part of this whole thing we can be referred to her for up to eight one to one sessions. Free. Sadly there is a waiting list but I'm def going to try it.
Thanks again, anti for the link.
pavlov, how generous are you? I'm thinking you kindly gave your employers six free hours this week. I hope you are keeping a record of these hours. You either have too heavy a caseload(surely not?!) or are really quite inefficient . I sympathise, though, it's hard to ask for a change of hours and then say it's not working.
I agree 100%about pain increasing through the day. I imagine there are lots of factors. Worth trying the lying down thing? You only have to swap the sofa for the floor.
I also so agree about lack of sympathy for back pain. I got almost no cards etc from work. In fact none at all until my first op five months in. A friend in the same department recently has early breast cancer which I know is shocking, but my god she was deluged with cards, gifts and flowers. I love her dearly but couldn't help feel slightly miffed.
Re massage, yes it's great and I love it but very temporary effect. Sound like physio and osteo are really similar when taking this approach.
Have a nice weekend all. I took my fIL to hospital appt this morning so will be demanding full kudos from DH all weekend. Except he's at a lovely lunch today, rugby tomorrow then golf Sunday.
matilda I do keep meaning to look further into the Alexander Technique, but always uncertain about handing over hard cash to people that I don't know for sure are any good. But, fab you get a few sessions to try it out! I will take a look at that link, give it a try.
I worked an extra hour yesterday. Yes I am recording the hours and absolutely I will take them back, but, not sure when that will be as I haven't got the time and I have to take by December as otherwise I lose it! I am at capacity with my workload according to stats, but those stats are not accurate. I am at 102%, and we are given 5% either way (never the other way ). But that is for fixed timings, so for a client who I see weekly, I get 2 hours a month (that's not fixed, depends on how risky they are!) but, yesterday I saw a client who has just come out of prison homeless and I had to pull out the stops to get him housed at 4pm on a friday (public sector winds down at 3pm! shuts completely at 4:30pm!), so I spend 2.5 hours dealing with that just yesterday, plus the first few weeks are more like an hour a session so that's 5-6 hours for the first month, but I only get 2 hours. And, if someone is monthly, I get 1 hour, but if they need to be recalled to prison for example, the paperwork alone takes 3 hours (to write, get signed, get sent off, get approved), plus the work that leads up to it, so probably 6 hours of work. So this week alone I have recalled someone to prison and sorted housing for someone leaving prison who is homeless, that means 12 hours of work (oh actually more as recall generates further paperwork down the line) this month that my caseload will only show as 3hrs. that's even before looking at reports that take 4 hours including researching info that I get 2.5 hours for (probably 3-4 of those a month), and other reports that I don't get any additional time for that take 5 hours! I suspect my 102% is more like 130%+, but that's the same for all my colleagues.
I'm so not good at working to rule , none of that probably makes sense to any of you !
sounds fairly typical to me Pavlov
I think the only difference where o work is manager it's supportive realised system is broken and absolutely supports clawing time back as flexi or toil.of course that just generates a backlog...
Oh, it makes perfect sense. Long years in the NHS to learn the mysterious ways our managers think.
If they decide a task, originally taking 2 hours will now take 15 minutes there is only one conclusion when it, guess what, still takes 2 hours. You are uncooperative and inefficient.
Glad to be out of it in some ways.
denial yes exactly. We cannot accrue toil that does not match our caseload, unless of course there is specifics that result in work piling up, such as me this week, and we have to take it by the following month or we lose it. I make sure I never have more than a couple of hours toil accrued, but some staff, those in public protection for example, they can accrue 30 hours in amount and it's just no possible to claw that back in one month, that's almost a week. Largely the local managers support taking toil, especially my last manager, she would insist I came in late the following day if I had worked late, but they are under pressure themselves to achieve targets.
I think it's even worse in NHS for goodwill of colleagues never being clawd back than it is formed sector of work. I am almost done with my goodwill. But, not quite, as the people that suffer are always the clients. I will try to leave early on Wednesday next week!
Am in a lot of pain today. I bent down to lean under the bed and Hoover, and my back popped, a slipped and smacked my head on DDs bed. Ouch! Then, I coughed a hard cough while on a walk and had nowhere to hold on to, DH was howling with laugher, apologising alll the while, but laughing nevertheless. And then, I sneezed twice in a row and my fucking work that has done it good and proper now. Leg pain is really stinging.
I am not sure it's my disc. I mean it's obviously sciatica, but, it's in both legs where it was not before, the pain is constant stinging, aching, tightness, but it doesn't feel the same as before, no pins and needles, or numbness, just pain. It makes me want do cry most of the time, it's not horrendous,4/5 pain wise, but relentless.
The pain clinic called, after my GP refereed me three months go, and chased it again 3 weeks ago. They called, spoke to my DH in Thursday, as I was at work, and said 'we have made her an appt for 1:30pm on Tuesday as we have had a cancellation, can you let her know please?' DH said yes, he said he was confirming on My behalf that I will definitely be there, she said that's great, all booked. I called to find out location yesterday and she has given the slot to someone else as I had not confirmed that I still need treatment. I called less than 24 hours after DH spoke to them and she didn't say I needed to call. Good job I did,as there was as no appointment for me! I now have to wait until at least middle of December. I lost my cool and she will try and email physio for me. I know that trick to get me off the phone!! Grrrr!
I have lots to do says DH is now at work, and we have friends coming over for dinner. I need to assemble the lasagnes he has made the sauces for, do roasties, tidy the front room, put some washing on as it looks like we dont ever do washing at the moment. All I actually want to do is have a long hot shower and snuggle on the sofa with a hot water bottle
I bet you can't understand that post though, given the horrendous typos! Got to love a tablet for changing things incorrectly!
He laughed?? Hope he will have plenty of time to think that over later when he's washing up the dinner things. I do hope the lasagne is well adhered to the dish. How you will chuckle..
He did too matilda I put my feet up when he got home
I ran today. Ok, I didn't really run, I played footie with DD and DS and did some basketball. If I remind you they are 7 and almost 4, you will see the level of basketbal and footie l I participated in . but, I shot some ball into the goal, 'ran'
hobbled away from DS and chucked some ball in the air. It. Really. Hurt. But I didn't show it, the children wooped and squealed with delight as we played for over 30 mins, before they ran to the swings. DD said to DH when he came home from work today 'mummy ran! she ran!'. It means so much to them. I never ever thought I would struggle to play active games with my children . I was going to be the one out there with them every day doing different active things.
DD was so funny though, she is coming into her own now, developing her sense of self, and she is so sporty! She jogged to the park, telling DS off for running, not jogging, and not pacing himself! she had her full garb on, tracky bottoms, tracky top done up, water bottle in her hand, jogging into the distance. She is so like I was at her age! and older too.
Now look at me - in bed having taken 30mg codiene/1000mg paracetamol, 500mg napraxen, and contemplating taking some diazepam for the muscle spasms and suffering from 30 mins of gentle play with my babies in the park
Hi folks. I had my appointment with Scoliosis specialist today. He was lovely.
X-ray showed that although my top curve was fused 22 years ago, my bottom one wasn't. So, I have 2 main issues - a 52 degree lower curve which is pushing my body to the left and worn discs, especially at one side.
He is referring me for an MRI scan. He assures me that since the rod has been in my body for so long, an MRI is not dangerous. He said if I felt it vibrating, they would stop the MRI.
I've also to get a CT scan to see if the broken rod is somehow irritating something and causing my upper back pain.
Hope everyone is having a nice evening.
Bumping for louey.
Hope you are all doing well. I'm having a combination of good and bad days. I could do with a week off everything but even when not working and having paid help, it just doesn't happen. I need to learn to say no.
Hello all, just wanted to update and to say how helpful I have found the Pain Management course I'm doing. Now done seven of eight sessions. It's run by our local hospital Pain Clinic and led by a psychologist and a physio.
Lots of different conditions, all in pain. Our original group of 12 is now 8, so clearly not for everyone.
The emphasis is learning to manage our lives with pain, accept, pace and most of all keep active and engaged. Lots of mindfulness. So no cures but my god, as the weeks have progressed there has been such a shift in the attitude of many of the group. It has also led into other pathways like the local authority exercise programmes for the disabled. So much on offer. So many relevant and interesting people brought in to talk to us.
I am hoping to be referred into the Alexander Technique programme which is free and one to one. Also getting one to one counselling with one of the psychologists to help me deal with certain aspects of my situation.
Anyway, just reporting back in case anyone is considering or interested. Most gps either don't know about this or are not up to date about it. I just wish the course was longer and I never thought I'd be saying that.
Hope that helps.
Matildathecat - thanks for you summary
I know if I would let my pain affect my attitude I feel miserable and very negative.
Mindfulness is a great technique to learn and practice by anyone anyway.
I've found this thread extremely helpful as well.
Thanks Matilda for bumping...
Coming in for some advice and support. My story is that I started getting lower back pain, mainly on the left, in June. At first I put it down to doing everything around the house as DH was laid up having had an operation on his foot. Got referred (privately) for physio which helped to begin with but the pain kept coming back and then got significantly worse.
He wasn't happy that it was just muscular so referred me to a consultant rheumatologist as it was often worse in the morning and he thought it might be inflammatory. Rheumatologist did bloods and an MRI and the MRI showed degenerated discs L4-5 and L5-S1, bulging and impinging on the spinal canal. Bloods came back fine but he still thinks that there is an inflammatory component as it is bad overnight and first thing. It was eased by exercise to some extent.
He gave me naproxen and a PPI to take before bedtime to "break the pain cycle". This worked for a couple of weeks, although the pain didn't go away completely.
The past few days though it has been horrendous, about 8/9 out of 10. Pains going down the back of my bum and into my legs. Today my legs didn't feel like they belonged to me.
Randomly, my GP phoned up on Monday night as I got all the correspondence and test results sent to him. He said that he thought I probably needed more pain relief than one dose of naproxen and has given me some tramadol to take first thing. That didn't do a thing this morning but I only took 1/2 a tablet. Will take a whole one tomorrow.
I've started pilates (done 3 sessions) and I'm doing a 15 min mobility programme in the morning which I've just started. However, I can't carry on with this level of pain for much longer. I've got 3 DCs - DS3 is 2.5 and needs a fair degree of picking up
cos he is a stubborn bugger who refuses to do what I ask him to and I don't always have help as DH often works long hours.
I used to run, a lot. I did the London marathon this year and I really miss running already. I have been told to stop and switch to non-impact sports but I can feel the weight piling on already - its so depressing.
I am not sure what to do - the consultant said the next step would be epidural injections and to see how it goes for the next couple of months. I definitely need more pain relief though so I can see I'm going to have to see the GP soon.
That was a bit epic - sorry!
Hello, I wonder if I may join in? I've met Matilda and Pavlov on other threads.
I have struggled with back pain (including sciatica and numbness in feet etc) on and off for at least 2 decades, but have usually managed it with visits to osteopaths and chiropractors. I started with a new chiropractor several months ago after recurrence of my upper back facet lock out ( and arm weakness/ pain etc). Their philosophy was regular adjustments to try and reduce spinal compressions (of which I have loads) and did warn me it would take a long time to stabilise my back. I thought it was worth a try as so far it has always just been fire fighting (limping from one crisis to another- literally). I also hoped for improvement in my general health (I have ME and POTS which limits my activity a lot!) I also restarted pilates, working up the levels some months back . Well now although my upper back is mostly behaving better, I am getting lower back trouble again, with sciatica, numbness in feet , pain and weakness in my legs, back, shoulders, neck and hip pain. In fact there are few areas of my back not playing up now! I had better say that my general health (ME) is somewhat better, - so perhaps their theory of decompressing the spine improving neurological function is right!
In all these years I have mostly avoided the GP who was of no help ( go to bed and stay there attitude of the 1980s) when I first developed difficulty as a young adult. I knew of two other young adults who had had unsuccessful back surgery which left them very much worse off and frankly didn't trust a surgeon or GP near me!! I am wondering if I should now ask for referral to - well someone in the NHS. Does one see a neurologist? Has treatment got any better? Am I still wise to avoid conventional medicine? Is their better pain relief than co-codamol ( I can't take most anti-inflammatories)
Sorry Louey, I did not see your post - wasn't ignoring you! It must be very tough with 3 little ones! I struggle because ds (my only) although 14 has autism and learning disability and is very stubborn just like a 2year old! At least I can say you are 14, you can pick that up yourself! I have been out of sport (I used to climb - not run for- 14 years I guess- except after ds who can speed away when upset as if trying for a record) for 5 years now ( due to ME) and found it very frustrating at first. I hope the specialist comes up with some help. Several ladies from my pilates class have said how helpful it has been for back problems but I have no idea if it is suitable for all back problems - or yours in particular. I thought it was helping me too. Perhaps mine is just a blip, and I could do with better pain relief so I can sleep!!
We posted at the same time I think Magso!
My DS1 also has autism - he's 6 (and a twin). Rarely needs carrying now but does have a habit of jumping on my back without any warning. I am trying to train him that he can't do that but he is just being affectionate.
My FIL has back pain, just had an MRI and is being referred to a neurologist - he has a lot of symptoms in his legs so I'm guessing that's why. I was told that my next stop would be an orthopaedic surgeon. But that was in the context of doing epidural injections. I guess your GP would (should) know who the most appropriate person is?
Really interested in what pain relief works for others as thus far, nothing has really helped me.
Ah- Ds is an energetic surprise jump-hugger too! He loves the sensory input- I do not. I'm still trying to train him along gentler ways!
Well i have had the MRI, and wasn't that fun. Nope. Fucking hurt laying still for that long!
Anyway, obv, the results haven't made it to the doctors yet, but my osteo asked if I would get a copy of the images for him to look at. So I did. And the following day when I saw him he said "Well. Very interesting images."
Apparently I have a severely central prolapsed disc at L3/4. And not normal facet joints (!). He has very sternly told me that I am not to attempt to do anything interesting as apparently the disc has hardly any jelly left in it (?) and the casing bit has shifted completely towards the central cord and is pushing it out of place - hence the pain.
So now I sit and twiddle my thumbs and wait for a referral to a consultant. <twiddles>
<waves> just marking my place as i lost you. I will come back and say hi properly later.
yama I can't beleive you have a broken rod and it's not been removed! It sounds painful just thinking about it. I hope the MRI shows that something can be done to help you. Do you think you are going to need to bottom curve fused?
matilda I could do with a bit of mindfulness. I am still struggling to get my head around this being permanent. It can't be. I am not sure if I am still in the 'denial' stage of bereavement model or 'anger', I flit between the two, then move on to 'depression and acceptance' but then back out into denial again!
Magso <waves> hello, sorry you need to be here, but you are very welcome. louey you are also very welcome. I am going to re-read you post and respond to some of what you have asked in another post as otherwise I will end up with my notoriously epic posts!
Me - been off work most of this week. Just can't get my back stable. I get myself back on track and it all starts to feel like I am going in the right direction, then it 'pops' or I twist and it all goes wrong. My leg pain is not horrendous, but my back keeps giving way. If I cough (still have a lingering cough from weeks ago), it causes SO MUCH pain, and I fall down unless I crouch first. Sneezing lying flat is not a good idea either. That sent pains through my back and into my legs and it was agony. I have lost most movement forward, backward, sidward. Although, I can walk, I have to do it gingerly as otherwise it's either painful or it will pop and have me on the floor.
I do have an MRI on monday though, as emergency. Does anyone know the process of getting results from this? GP talked me through the results last time, not thoroughly, and I only got a simple letter from lumbar physio guy who requested it, saying yes you need to see neuro now. Seeing as neurosurgeon requested it, will he just write to me and say 'yes I am going to operate, stuck you on my waiting list' or 'no, go back to your gp'. depending on the outcome, or will he ask me to go in and talk about it? Getting an appointment with him is like gold dust. I am worried it will be dragged out for more months.
Also, matilda can I PM you a question or two about work stuff and disability?
scone I love that they expect us to do nothing! Hope you don't have to wait too long for consultant appt. What anti-inflammatories are you taking? what level? I know for certain I have inflammation, but my dose eases but does not cut it properly, I wonder if I can go higher. GP said no, but info on t'internet suggests I might be able to, but probably have to push it.
Jumping children? oh yes I have two. DD now 7 has learnt over the last two years that she simply cannot do it. So she charges at daddy instead. DS, now 4 (yesterday!), still hasn't really got it. Well he has, he is better than he used to be but he forgets and jumps. But, he used to jump off the sofa onto my back and I was in soooo much pain I would scream at him. Poor kid. It took a very long time (he was a bub at only two when this first became a problem) for him to understand that I could not have him jumping or hanging.
louey firstly. If you pain is 8/9 out of 10 you need to consider going to A&E if your pain releif at home is not working. But. You need to take your strong painkillers and see how they help. Not half a tramadol, you need to take the full dose and accept you are going to be a bit screwed brain wise. Are you taking paracetamol? For an over the counter medicine, it's actually fab. If you take it with napraxen and tramadol it works wonders. If you don't get on with tramadol you can ask for codiene. You can ask for sulpadol, which is 30/500 (co-codemol) and take two if you are at 9/10. that is 60mg of codiene so don't advise if you have not taken it before but if you have and are ok with it, it will turn you into a goofball but will work . Also, if you think there is some inflammation of the muscles/spasming (may well be) you need to ask your GP for some diazepam, if you can take it. It will stop the spasms and let the blood flow better.
Also, use heat. Heat is great for pain, don't underestimate it!
Secondly. If your pain is going into your buttocks and into your legs, it is nerve pain. If the pain is severe enough to stop you walking, if you have numbness in your whole leg, if you have 'saddle numbness' (genitals, back passage) can't go to the loo (not due to meds but no sensation or altered sensation) then get to A&E so that cauda equina can be ruled out. I was stubborn this time last year, I was in SOOO much pain, and my leg was very numb but I felt fraudulent as I knew what was causing it and was 'in the system' so felt I shouldn't go to hospital, but I couldn't manage it at home and should have gone in.
oh, and also, meant to say, if your nerve is trapped, or pressing into the spinal canal, this is neurological. He should be sending you to neurosurgeon for injections or anything that is linked with discs, not to orthopedic surgeon. Check that out with him so that you are not sent around the houses.
Hi I have posted a few things elsewhere on mn about my back suddenly going, but hope you all can give me some more advice. My full story is I have had a weak back for years and once before hurt it extremely badly which I could just move but was in agony and took a few months to go completely. Then over the last few months have often had problems and aches, last couple of weeks getting worse each day but could still do most things, then Thursday could not get up with out the most hideous pain I did manage to walk into the other room but just stayed there all day. It slowly worsened until in the end I called out the emergency dr who gave me an injection (not sure what) and some diazapam also I have ibuprofen and paracetamol and codiene. I am still in bed I have got up a few times but still can't sit on toilet which I really want to. I did manage to sit on it but was in such agony i couldn't go. I have been able to go in a bucket. I never realised the toilet would be such a big deal. its awful.
Pain is in my left lower back and going down my leg. Sometimes my leg hurts really bad.
I keep reading things about trying to walk despite the pain. Is this a good idea, how much should I walk.
Dh insists on calling dr back out Monday but even though they did come out in the night before is it a good idea to call again. I talked to my own dr on Thursday when I was stuck in bed but not in as much pain and he was a bit dismissive and just prescribed some codiene for dh to collect.
Also I am a bit concerned about taking all these pills. I don't think I can manage without then tho. Is there a real danger someone recommends I took paracetamol first, then 2 hrs later codiene then 2 hrs later again ibuprofen, I have got the gel now which I think is better for my stomach but still have pills left too. The reason was to space them out so I am never having to wait in pain for the next dose. Is this ok do you think.
Sorry for all the questions I have never had this problem before.
A tip for sneezing from my osteopath - wrap your arms around yourself and give yourself a tight hug (so, arms crossed over the front, hands under your armpits and squeeeeeze!).
Now, you have to sneeze down into your chest as you obviously have no hands free to catch the sneeze but it does actually stop my legs collapsing and the pain. I've even managed to sneeze sitting down virtually pain free.
Absolutely no use for whilst driving mind you!
pavlov, feel free to pm! not sure if I could help but happy to try! So sorry you are suffering so much again (and all others both new and old on here). I totally get your crazy range of emotions re the seemingly endless nature of all this. It's a total head fuck. I have, amazingly found some of the mindfulness stuff helpful. Just bought an app by Jon Kabat-Zinn on mindfulness and pain which is quite good. There has to be a way of learning to live with it.
reviving, sorry for your situation. Sounds like a very bad case of sciatica and spasm. This really is a call out the dr moment if you need additional drugs. Unfortunately gps don't have that much to offer other than drugs and referrals. My experience has been that it's often best to know who you want to see. I know of a rapid access sciatica service if you are in London, though not sure just how rapid. It is NHS! Please read all of pavlov's excellent advice a couple of posts up thread. I can't emphasise just how much comfort I have had from my hottie. If it persists at this level your GP will have to get you seen by neuro team in a&e. The stuff about not weeing and saddle numbness is massively important. Please go to a&e if you have the slightest doubt. Cauda equina as it is called can result in permanent bladder damage. Don't ignore or assume your GP knows best.
Also, sadly, long term drug use is something we may have to get used to. I am on a huge cocktail of meds. There is no alternative. Hopefully you will recover. If you're on long term anti inflammatories you need a stomach protector like Omeprazole. The thing is to understand how different drugs work and how to combine them. A group of drugs that are often good for nerve pain( your leg) are things like Gabapentin and amytriptiline .
Sorry, getting epic again. Love and warm hugs to all. (Tramadol talking!)
Thanks for your reply Matilda I am sure about the toilet problem only being due to not being able to use the toilet I am able to go in the horrible bucket. Although it is still painful I am feeling a bit better in myself.
I will definately call dr monday esp if i am still having problems walking. What is the best way to approach them do you think should I ask for a visit, if I still can't walk easily. I have managed to walk into the next room with dh help but it was agony and if it is still the same not sure I could make it to the surgery.
reviving go to hospital. Seriously. If you are in so much pain you don't think you can get to go surgery, then you need stronger painkillers, now. In my own experience of gps they won't come out for back pain. But I have had telephone discussions and been prescribed over the phone, both ooh and my own GP. In fact, I rarely go to see the GP now as he knows my condition, I just call up I remember feeling where you are now. Thinking hospital was not the right place, and looking back simply cannot beleive I didn't go! Peeing in a bucket due to pain and not getting to loo is not good. It sounds v much to me like you need more intense pain relief and maybe they will decide to do MRI if they think your nerve is trapped.
The absolute bed bit of advice I was given when I was where you are was to go and read the spinal pathway info for your pct. there is a route the GP should take depending on pain and treatment responses, either primary care route (osteo, locally managed back pain clinics) or neuro/hospital route (physio, spinal assessment team, hospital pain clinics) and you will also see the usual route the go should follow for pain relief. I found this so helpful as a it meant I knew what to expect from my GP, and when he didn't change tack when the primary care route didn't work, I knew what to ask for next. I didn't realise for example before reading my own pct pathway information that I could ask to see a neurosurgeon. When I knew, I asked. Physio was also good as they were able to spot read flags and speed my spinal assessment appt.
Wow long. Not even taken tramadol
soup I'm going to do that for sneezing! I have been managing by holding onto things and crouching. Not a good look at work or in supermarket
I went out last night. Mistake. Didn't drink much, home by 12:30am, but ds woke me at 3am, maybe earlier. No sleep from then on as in pain so couldn't sleep.
I have pulled a muscle in my neck. Is it related to my back, how I am standing, walking etc? I am trying to keep posture sorted but it's hard. I have pain in my spine at the top, worried it's not just muscular, as pain reminds me of lower pain but in neck. It is radiating down my arm into fingers, arm feels heavy. I have had neck crunching for a while, but not painful. Just put it down to bad posture, spinoff if not having good spine for a while. So, of course, rather than thinking its nothing major I am panicking that I am actually falling apart. It's not likely to be a disc or something in meat cervical spine now is it? Either way, lower spin spin and upper back pain is really really shit.
reviving meant to say also. We are rattling medicine cabinets here you have to take them! No need to suffer. Although I am a really bad medicine taker. I refuse, then get fed up, then take them, then stop, then start. You need to be regularly taking them, especially the anti inflammatories,as they build up in your system and work better.
Reviving, I agree with pavlov. Go to a&e. You can't walk across the room and have to pee in a bucket? How much worse does it get? You say you feel slightly better, I wonder if the spasm is easing a bit. It does after a few days. Basically the spasm is the muscles trying to protect an injury. The injury is still there. I'm not a doctor but this does sound like a disc prolapse. It can only be diagnosed completely with an MRI.
I would go, tell them about your toilet troubles and weep loudly. I'm pretty sure they'll scan you. I found having a diagnosis very relieving somehow. It will get you better drugs, too. Please go. If you have private health now would also be a good time to use it.
Pavlov, I never knew that about the pct pathway. How interesting. Where did you find it? I honestly found my way through quite random referrals, some good some not. btw if your neck is now agony, too do try the Alexander Technique constructive rest, it's meant to be really good for necks. Tingling in arms sounds a bit ominous..
Went to the Tate yesterday and am paying for it now. Drugs haven't helped so off to try my new app.
Thanks guys im not totally against going to a and e but I am still worried about getting there I just can't face a drive plus long wait in uncomfortable chair. Also of course worried it is just normal back pain they will think not worth being in hospital for but can be treated at home. Do you think they will give me anything stronger at home I am coping ok on the pills I mentioned when lying down but nothing is helping me with the pain when I move wrong, stand up for too long or sit down where I can't take all weight off my back by leaning. If I could get something maybe I could go to hospital or other place.
I have had a few tramadol i had left over from a previous injury when it first went also, that eased pain when still in flat position but again not enough to help me move. So even that is not enough to get me moving far.
Wish I could have gas and air like when I had dd lol.
Pavlov Hope it helps with the sneezing - it was a revelation to me. No more having to hold onto something and bend my knees
revivingshower - you must go to hospital as soon as you experience any of those:
this was advice from my sis-in-law who is a GP and herself experienced it, what followed was an emergency back op for her
what those symptoms mean that your nerve is damaged and in worst case scenarios you can end up on a wheelchair if damage has happened
she described her symptoms as loss of feeling in one of her toes and constant tingling of the inner thigh
I was rescued from massive pain and inability to walk by a very experienced osteopath who massaged my muscles and they relaxed so that I was able to stand up and walked to the toilet by myself for the first time in 3 days
I have succumbed to diazepam. Back pain eased, neck/shoulder/arm pain less so. only 2mg, second dose just taken so that'll be me in bed in a mo , i am hoping it will sort out the neck/shoulder/arm issue as 1) i have to drive to a meeting tomorrow and 2) I have to do a lot of typing tomorrow. Diazepam on a school night is not hugely great as I feel groggy and tearful the next day. not good at work.
matilda you know your scarring from surgery - what kind of pain does it produce? I wonder because the stinging I have, the sciatica is in both legs quite uniformly and I guess I am wondering/worrying if it's scar tissue causing the pain. Is it too soon following surgery for scarring to cause pain?
Know how you feel Pav. Have resorted to tramadol tonight - normally can cope ok with the diazepam but it has been ramping up for a day or two and as I was making the dc's dinner so hunched over they were calling me Quasimodo, it had to be done.
The Nephew returns to from where he appeared tomorrow which is a relief. He may be 20 but it has been like having a particularly needy child (though one that smokes and drinks) in my house. And no - he hasn't helped with anything. I am determined to be fit enough to drive him back to the airport tomorrow. I feel so utterly horrid, but it has been such hard hard work having him here.
Reviving, I really think a chat with yr gp (at the very least) would be a good idea. Have you seen anyone at all about your back?
20 year olds are so selfish!But, actually not all. I would never have stayed at a relative's house at 20 yrs old and not helped. Especially if they were poorly, but even without. I would insist on helping. Bet you are glad that's over!
I don't know whether to take the day off work tomorrow. Even if I feel marginally better than I do now, I am going to have a 'painkiller hangover' which is not helpful when working/driving etc and I won't be able to continue the meds at this level.
<sigh> working is so hard right now
20year olds? Lovely fun if you're on form, bit like toddlers with regard to helping out. Think we've raised a generation of useless but entertaining dependants, too much extra French, not enough helping with chores. My two need to be told everything.
I have the dr coming for a visit today. I am going to tell them how I am doing of course, anything I should ask? Am going to ask about physio and I think they may recommend it anyway. I have managed to walk slightly more but its still very hard and leaves me exhausted. Going to keep doing little walking every hour or so throughout the day though.
soupdragon, that sneezing hug is helpful. Thanks!
Reviving hope the dr was/is helpful. I don't think our GP will do home visits.
I am a bit better than last week. Its gets worse through the day so presume it is simple compression causing trouble. Cannot sit for very long, especially in the car. I have a long car journey the weekend before Christmas which is a worry. I managed work just about (work very PT) with a giraffe pose rather than sitting or standing with a stoop ( I am too short to sit for most work related jobs anyway- I usually perch on the highest stool available) for as much as possible. Has anyone found a seat wedge helpful for sitting? I already use a lumber cushion in the car, without which I would really struggle. I have a mini wedge ( from Aldi or Lidle some years back) but it is really too thin and soft to help. I often get numbness in my saddle area (even when not in lots of pain) with sitting but it resolves when I stand, although I look drunk for a while, until my balance and legs are fully back on line.
Pavlov hope you are feeling better today.
My pleasure. I have been sweeping dusty corners so have been hugging myself a lot today!
My dr do not like to do home visits but only if you just can't get in they make an exception. Dr examined me said thinks it will slowly heal take double dose codiene now 60mg at a time plus ibuprofen and paracetamol and diazapam, not all at once! Hopefully this will allow me to move about a bit more.
revivingshower - cou,d you look for an osteopath for home visit?
Reviving, glad th dr has been. Drugs will at least help the pain. What is your situation, may I ask? Working, dc etc? It's worth doing a bit of planning now and getting help lined up since this is likely to be around for some while.
Can you get a cleaner if not already got one? Online shopping etc, etc. make it clear to anyone who asks that you are seriously injured. It helped me so much to have an actual diagnosis after MRI. 'Bad back' sounded so lame. Sadly I paid for the scan.
If you have pure codeine tabs, do take with paracetamol. They work better. Last time I was in for surgery the anaesthetist was discussing post op pain relief and said I'd have oral morphine and paracetamol. I won't need the paracetamol, says I. Surely morphine enough? No, he said, opiates are greatly enhanced by paracetamol. In fact, most of us take a combined tablet such as cocodamol. I know you are barely walking but of course be careful of driving etc when new to all these drugs, they can make you feel very odd.
When my disc first went, a few weeks in I was lucky enough to see a lovely consultant who did a version of this on me
It's a fairly strong indicator of a disc prolapse if positive. I simply cannot understand why gps aren't trained to do this as part of their examination. I was strongly positive. I'm guessing you would be, too. Please take it very, very slowly and gently.
Pavlov, hope the scan went ok and you get the results soon. So frustrating to wait for the result of a scan on you!
Thanks matilda that is very interesting about the paracetamol I will definitely combine. i didn't do that slump test but she felt my legs and spine. this did not hurt it is twisting or standing too long. I realised one reason I could not sit on the loo is that it hurt my bad leg to be pressed on the hard seat. So I have put soft cloth over and a chair to lean on but it is still difficult to sit long.
I am ok for housework child care etc as dd is 9 and dh is able to fit things round work, also my mum is coming to help out a bit a couple of days but it is not ideal we will struggle a bit.
reviving glad the GP came out. And, you say don't take all those at once. I have done that on many occasions sometimes, it's all you can do when the pain is horrendous. The diazepam is actually amazing for back spasms. I have always been so so careful about taking them I didn't want to at first (I work with
among other people drug users and diazepam addiction is probably the worst with many of my clients so I have always been fearful of becoming addicted), but actually 2mg x 3 daily for 2 days and it makes a HUGE difference to pain levels and can get you up and moving again. And two days (actually more than that even but I don't take it for longer than that at a time) at that dose won't cause long term addiction. Agree completely with matilda about paracetamol alongside other meds. It's a surprisingly good painkiller. I hope you find some relief soon.
Had MRI. Over an hour to wait due to an emergency. Blimey did that emergency patient make me feel lucky. It seemed that person was not having one MRI, but several, looked liked she had been in a car accident. She did not walk in lets just say.
Funny thing happened though. I walked into the MRI room fine, stiff and slowly but nothing significant. I got on the bed fine. The staff were friendly, kind but didn't help me on as I didn't need it. However, as I came out and one staff member took my headphones off etc, I went to roll off the bed doing a log roll and the other staff member who I presume was the radiogropher as she had been in the other room came over to me, quickly and helped me off the bed, helped me stand up, put her arm out and held me as I walked out, like she expected me to struggle more than I was. She actually guided me to a seat, 'helped' me sit down and gave me my boots. When I was done, she came out to get me my stuff from the locker and was being really really nice! DH said 'wonder what on earth she saw on your scan then?!' I think I am just not used to hospital staff having time for anything other than the courteous split seconds they get. And it was proper busy there too!
I went to work. Stoic me! My boss was very appreciative, as there was no-one in my team in! He practically cheered as I walked in, very unlike him I struggled a little but managed it ok, just have to work standing up quite a bit at the moment, and need my crutch if I am walking further than a few yards in case I twist and back goes. A colleague said to me that she was surprised I was always so smiley. I asked her if she was talking about the wrong person, then wondered if the meds show on my face, as I am not a smiley person at work
pavlov that reminds me of a friends story of her scan, she had to pay privately as they were all a bit dismissive and said it was nothing, but the scan showed it was so bad the Drs all came over to help her out of the machine and fussed like anything.
reviving I doubt that! I have had two scans in much more pain than I am in now. I am even doubting there was much going on. Once again though I am doubting whether there is even pain at any real level and perhaps it's all in my head. Does anyone else ever worry about that? I mean, I know it is real, but it seems to have gone on for so long, I am in pain all the time but it's not always high level pain, I just think, no, it's not really hurting that much, I am just making a huge fuss, it's actually inflated because I am tired, sick of it. Instead of being the raw acute pain from the beginning (where you are now), it's sort of become so normal and constant I think that's probably why I am doubting it.
But, with cauda equina it can actually happen with very little or no back pain at all so I guess in some cases people do walk fine into the scanner and then have everyone fussing, as if they move wrong, it could be really fucking bad! Disclaimer: I have no cauda equina symptoms so that doesn't apply to me
Sorry didn't mean to sound worrying I think my friend had a trapped nerve in her thigh, not sure exactly, but the thing was no one would believe her how painful it was. They acted like she was putting it on.
I'm sure the results come back quick if they see anything urgent.
I think with long term pain you do get used to it to a certain extent esp if you have painkillers. But that doesn't mean it isn't real pain as you probably limit what you do to compensate. If it were improved you could do more.
oh you didn't worry me! I would kind of like there to be 'something' wrong. So it explains why I am feeling this way. I should be out there running now after surgery, bodyboarding and getting proper buff and yes I absolutely restrict what I do. And, I fucking hate it.
Then I wonder, is it really that bad? Should I just crack on with stuff and not wait. But, then I do, and floor myself. DH says I am trying to do too much, but ffs I had surgery in June, that's 4.5 months since surgery, I am not sure how much more little I can do.
I am bad with painkillers. I don't take them as often as I should. I preach about it to others, but am shockingly bad myself
How are you feeling today?
How is everyone else? We are all quiet, do you think some of us have lost the thread? I did for a while.
Been lurking, but feeling a bit quiet about stuff. Looks like I won't be having the radio frequency for a while yet as when I phoned up a month after to check whether I'd been approved I found that whilst I had, admin had lost all the paperwork needed for the referral and the pain nurse has had to rewrite it.
In the mean time meloxicam is now upsetting my tummy, I've tried so many and meloxicam seemed the only one without side effects. Psoriatic arthritis is in a flare and its clear the steroid jab has worn off and so I feel thoroughly rubbish.
I usually doubt myself too and wonder if everyone else is in pain and exhausted but just get on with it. Is this what life is supposed to be like and I'm just pathetic?
OYBBK so sorry you are having a flare-up and stomach issues with meds. And what a cock-up for your referral! Although delays and delays and hope and delays seem so usual.
Yes to in pain and exhausted. And yes to wondering whether everyone around me has pain and is in the same boat as me, and I am just more pathetic at managing it than those. But then I remember I didn't find it this hard when I was younger. And I then I think, it is perhaps that I am just coping, am depressed etc and not so much in pain, just not quite managing so well mentally. And then I think, NO! It's pain! it really is! And it's a viscious circle I struggle to break from, and then I actually do get down.
So, no, it's not just you being pathetic and no I don't think everyone else does walk arounds suffering. You have a very real and very debilitating condition, as we all do here, and thank god for you guys else I am certain I would absolutely just blame my mind.
Pav, I'm had a similar reaction from the MRI staff. It has been hurting more this week, back to taking the tramadol with the inevitable wooziness it brings. It was such a relief when the osteo showed me the images, to actually be able to know there is something wrong rather than my crap pain tolerance.
Oh kitten, that sounds terrible, I am so sorry.
I'm so used to referrals being cocked up that its standard for me to phone after a month or so now to check it has happened. The chasing makes you doubt your self too doesn't it.
Snap though about this thread and other similar ones and being able to chat with you guys because its when people say oooo, I have arthritis too and ruefully rub their knees or whatever and it makes you wonder if you are wasting resources by trying to get it treated and sometimes people say oh it's all because your getting older - they don't get that you've had it for years.
Pavlov, wait until your MRI scan before trying anything! Also my physio says that mris show bones and soft tissue, not pain. If its painful, don't do it.
Kitten sorry you are in the middle of a flare, and with the medication irritating your stomach. I presume you are already on some kind of stomach protector medication? I work in the NHS (only very PT now) and its sad how non trusting I have become about the 'systems' especially referrals and appointments - since my son (with his disabilities) arrived!
I splashed out and bought a wedge cushion for the car - Putnum 8 degree wedge. I did not know if I needed a cut out or not so got it without. It seems helpful but it is early days yet. As I have short legs it means I have to sit very close to the steering wheel as the extra height pushes my little legs further from the peddles. I am still getting used to it! I can at least see over the bonnet! DH is away so not being able to sit to drive was a problem ds has lots of appointments all in different scattered around hospitals.
Do herniated discs ever put themselves slowly right? Has anyone managed to get vaguely stable without surgery? I have a worry that my latest episode may have been triggered by overdoing the pilates which I only can do at the lowest level for 45 minutes a week. CFS/ME has made me weak!!
I do not think people understand how disabling back pain and the physical weakness and limitations that goes with it is. My troubles are relatively minor in comparison with many of you here. I would wish you all well if I could.
I take lansoprazole along with it. I guess I need to go back to the gp or phone the consultant. I've just run out of energy though, so I can't actually be bothered to go through the whole trying to get an appointment. I'll give it a few days and try again, perhaps a bug exacerbated it or something.
I think if you are dealing with cfs and back issues then you are dealing with a lot.
Not the best day of recovery so far. I am about the same. Haven't walked about as much as I meant to as so uncomfortable and drugs making me feel very sleepy.
Have ou got into a routine as to which drugs to take when?
Pretty much I am writing it down. It is bad when all wear off. The diazapam makes me sleepy and now I am taking 60mg codiene at a time it seems to make me sleepier too.
I am worried I am not pushing myself enough to walk about. It gets painful quite quickly and I stop.
Pain rather than ache means stop.
Not surprised that you are struggling with sleepiness, I can't get beyond 30mg of codeine at a time without spending the day comatose in bed.
reviving I must say, I personally think this whole 'you got to be walking around and not in bed' business is a pile of crap. I mean, I am not saying it's ok to spend days and days in bed. But when you are in acute pain. You have to rest. I consider, on those days, moving around being that I get out of bed every 1-2 hours and walk to the toilet, or, walk down stairs slowly and back again. And that is it. You can also do some exercises in bed, to keep your back moving. So, while it's not good to lay completely still for hours on end, moving does not have to be going on walks or pushing yourself to the point of increased pain. There is a great book 'back sufferers bible' by Sarah Key, a renowned physio, which gives great exercises for different phases of pain, acute, semio chronic and chronic. I would advise you get a copy (and everyone else too). It is really good at explaining what your spine is doing, why, and how you can help it recover.
She talks about diazepam use in it. She says that if you need to take it, you need to take enough to pretty much knock you out (5mg she recommends).
Do not stress that you can't do enough moving around.
scone I am so sorry i never responded to your post about your MRI results. I did read it, and didn't respond as got distracted responding to another post or ten! No wonder you are in so much pain I hate the waiting around not knowing what you can and can't do. That's why I was so pleased following surgery as I knew there were limitations and why, but that in time I would be back on track and doing lots again. Yeah Right. Hope you don't have to wait too long.
I'm Having a Bad Pain Day today. Feel sick, meds making me feel more sick, mostly back pain not leg pain though, which I see as a positive as yesterday the leg pain had increased. I am going to work but emailed to say running late. Just taken meds on empty stomach which I know is Really Bad but I can't face food due to feeling sick due to pain. and that cycle has to be broken. I promise I won't do it again
today. I have taken omeprazole with it though. So that's alright yeah?
I totally agree about the activity levels early in injury. I was terrible, but that was because I didn't have a clue. I was trying to walk the dog etc. pavlov's suggested routine is much more sensible. Just don't seize up and try to give your core muscles a little flex, too. This won't hurt your back. If sitting is still painful, don't. I still eat standing or lying and avoid sitting if I possibly can.
Not surprised your head is woozy. You can always take 30mgs codeine with 2 paracetamol which will reduce that fog a bit. Codeine is an opiate so even 30mgs is a lot.
Pavlov, you're a trooper! Hope your day isn't too vile. Happy to tell you about my work experience let me know what you need. I'm bad at eating, too. I went on a very adventurous and really looked forward to trip to London on Monday to see an exhibition with my best friend(Saint). Suffice to say the trip was almost aborted after a very near miss vomiting episode on the tube. Is it worse to vomit on the train or escalator? Felt really grim.
Thanks that makes me feel a bit better i will look for that book pav the dr said i could increase my codiene to 60mg when i explained how i am having such problems walking and getting to the loo but i might reduce it back to 30 plus paracetamol unless i really need it. My mum gave me one of those stick on heat patches today which feels really nice. Mum will be here all day tomorrow and i am going to try to do a bit more as feel safer with someone on hand in case i get stuck, dh is here but asleep at the moment, he works shifts.
Heat patches, another subject I have studied in depth! The Wilkinson own brand ones are brilliant. Work just as well as more expensive brands and cost much, much less. Was using constantly for a long time. My back looked very strange and mottled but I didn't care.
thats worth knowing. Branded ones are too expensive to use regularly.
Coop pharmacy have lavender wheat bags (long thin shape) to warm with the microwave at £2.50 which is half price. Ok for in the house.
Stick on heat patches? What? Ones that you can wear as you go along? now have I missed those! I got one that you wrap around you, and a new belt that you insert the cold\hot, but it's bulky and not comfy, if there is another one! links please?! I have just had a loooooong soak in the bath to ease back, and the dreaded returned leg pain. A patch that I can wear around and about especially at work would be fab!
Pav, when I was chatting to the osteo yesterday he said that acute pain after surgery can be an acquired infection and that is when those antibacterial injections work wonders. Might be worth mentioning anyway.
Went to see the gp today and she is referring me to a surgeon. Oh frabjous day! Anyone got any surgeons to see (or avoid)? She said I could go to Coventry or Banbury but I have managed to always avoid hospitals apart from giving birth and fractures so not sure where to look!
Did a bit too much yesterday. I think I get overexcited when the painkillers work 'enough' and make it worse. Oh well, nearly all the decorations are up now. It is v,hard not having anyone around to help and although the Bloody Nephew has gone now (thank god ) he had left behind an unstripped bed and black mould all around the windows as a result of spending all day and night in there without opening the curtains, let alone the windows. Scrubbing them clean yesterday probably didn't help much!
ouch! I dropped a can on my bent knee. it fell out of a cupboard in fact. right onto above my knee. My leg was already hurting with sciatica and now it hurts because I dropped a baked bean can on it too! FFS.
And. A colleague in my small team who is now off with a poorly back, has just been sent some flowers to 'cheer her up'. I got a fucking card with like 3 or 4 rushed messages, sent as an afterthought about a month after surgery, and 18 months after my back problem first occured, and having had several bouts of 5-6 weeks off. No fucking flowers for me. Bah fucking humbug. Would I be really mean to not contribute the £2 toward them? I really don't want to, or want to with some sarcy comment like 'flowers from colleagues would have been nice, so I am contributing as I know how much she'll appreciate them'. I am also thinking of just saying no. with no explanation. and I am also thinking of smiling sweetly and saying, 'here is my £2, I hope she feels better soon'. I will probably do the latter as had I not had a poorly back I would absolutely have done this, and would not have waited 5 bloody weeks to do it (how long she has been off for approx), and I really do wish her well as it's bloody horrid and it's not her fault she has a bad back. But. I think it really sucks that my team have a clique and make their friendships and favourites so known by sending flowers to some colleagues and not others. Do they not even know I realise I got none? Are they so insensitive.
OK. <breathes> I feel a tad better now. I am not usually a mean spirited person. It's horrible! So I know that even as I try to not show my ill feeling I will give some money. Or maybe I will just pretend I haven't read the email which followed a convo I pretended not to hear.
I am in bed. I have heat. I have painkillers. I have turkish delight and some custard creams. I am not getting up again.
scone yey! for surgeon referral. Can you go anywhere in the entire country? or just Banbury or Coventry? I don't know anything about those. My surgeon is good, has a good local reputation (and the female nurses at the hospital swoon when his name is mentioned, but perhaps that is less about his surgical skills ). Also there is a neurosurgeon in Exeter RDE who is apparantly Amazing, has a fab fab reputation with both NHS and private patients. Mr Khan I think his name is. I can find out for you, but Exeter is a bit of a trek!
Interesting about the osteo talking about infection. I had read about infection in the earlier stages of post op, but not longer term. I might go and google that, and have a chat with GP about the ABs. I had been meaning to do that anyway. It would make sense as I am generally feeling really bloody rotten. I would like it if it were as I could fix it with ABs!
ok. I AM getting up again. To apologise to my little ds who I shouted at and sent out of the room for playing happily next to me with a little man and my drink, and knocked it over. I was so cross as I can't easily get to it to clean (or, at all). Poor boy. He is going to bed now, and I want to say sorry for shouting. Don't want him to go to bed with ill feeling from me.
Aw pav don't blame you for being a bit put out about the flowers, I say save the £2 for a bar of chocolate for yourself! Just forget to hand it over.
The heat patch was great it lasted about 10 hrs and was so thin I could lie down without adjusting my position at all. You have to stick it on your underwear not on the skin.
oh do you have a link to one? i cant beleive i never heard of them!
oh i just googled, do you mean like the deepheat patches? they work?
these are the patches my mum uses. Unlike the voltarol ones they don't have any diclofenac so are safe to use with the painkillers.
As to your colleague, I would be muttering under my breath about the unfairness of it all and then put the 2quid in anyway. But I am a well known soft touch!
This is the one I have curaheat pad but I think the other kinds are similar
Yes, heat patches are magic! The cheaper ones do work just as well. Must admit I've stuck on my skin to get the full heat. No third degree burns yet.
The ones made by volterol etc are much more expensive and are the same thing. Bet they're all made in the same factory. Get down to Wilkinsons pronto.
Scone, I have latterly been treated at The National Hospital for Neurology and Neurosurgery in London. Nearly all neuros will have done training here. It's an old building but all the doctors I've met here have been excellent. Certainly they take referrals from the entire country.
Now surgery has failed I'm under their pain clinic. The pain clinic is combined with the Hospital for Integrated Medicine which is next door and they have a wide range of medical and complementary therapies on offer.
Pavlov, I think I've said before how I also got nothing from work until some flowers five months in when I had surgery. A friend and colleague in the same dept. recently had early breast cancer (which was awful, but she's fine now and back at work). She was completely inundated with flowers, gifts and cards. I did struggle with that. The bottom line is people don't get it. I might have been a bit similar before all this. I maybe did think why can't you just work with a sore back. Well, I know now .
Have a good day everyone.x
Oh, forgot to say I went to Lidl yesterday for the first time ever. As from today they have special leg cushions for lumber pain for £10. Am going back later. In the picture in their magazine it looks deeper than this, but here's a link
I know I sound thick but how would you use that pillow?
Thanks! The lidl one is a great price!
Just been in, cushion not available until Monday. Will report back.
Omg I want that pillow. Now! <sending DH right now>
Wait! Don't keep the poor chap standing in the cold til Monday! Please note I did not stock up on the other lovely items for sale on the same page above...
Ok, hanging fire. He was not impressed with being sent out anyway...they also have some gel hot water bottles...
DH does the weekly shop there, got some lovely Christmas stuff already
and eaten half of it already
I bought some spiced almond biscuits for Christmas there yesterday. I thought it right to taste and check the quality. I'm very ashamed of what happened next. The remaining few are hidden. -so only I know where they are-.
Had a uh similar episode with a box of Turkish delight. No one has noticed yet!!
Got mixed up and went to Aldi, where I got some warm socks for ds ever growing feet! (I mix Aldi and Lidl up they are in opposite directions so only go if passing as both are too far to go for regular shopping.
I attended a short relaxation course today, so I took a self inflating camping mat as I didn't have the suggested Yoga mat to lie on. It was a revelation in that it was very comfortable - warmer and softer than the floor but more supportive than our bed.
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Ameet, thankyou for your comments and concern. I can only answer the question directed at me. Yes, I did have predisposing factors to a disc prolapse. I was born with congenital hip dislocation which went Undiagnosed until 18 months. I then was treated with traction and plasters. At the age of 11/12 I had bilateral femoral osteotomies. Age 15 I dislocated my right patella. Corrective surgery was slightly over zealous meaning the patella was off groove resulting in osteoarthritis of the patella. This, combined with a long career in nursing and midwifery almost certainly led to my disc prolapse.
Having said that, I swam 5000 metres a week, front crawl, did bi weekly advanced Pilates and generally kept myself very fit. I was unlucky.
I think you are right, some injuries will heal. Mine will not. I can, however try to improve my pain and quality of life. I see my Pilates instructor weekly and hope to continue Alexander Technique.
Not everyone has access to all this. The care of back injuries in this country is patchy and inconsistent.
Thanks again for your interest.
ameet thank you for your input.
I think you will find my pain is caused by inflammation from an aggressive auto immune disease.No amount of re aligning is likely to fix that. I have high hopes for expensive drugs though
About going back to work, when I saw the dr who came out to my house last week she advised about 10 days off but I am making quite slow progress, yesterday I got down stairs and walked a small amount but I think I stayed down too long and was a bit tired and had a very bad time getting back up again even though I had taken my strong painkillers. I then slept all evening. Also getting to the loo is still difficult although I now have a chair to hang on to and balanced a pillow on the edge of the seat to cushion it a bit. I can only sit on there for about a couple of minutes before it starts to hurt. All this codiene is also causing me constipation and (tmi) I have not had a bowel movement since I got the bad back, over a week. So this is a problem too.
How much longer do you think I can get signed off for? I have 2 weeks to work before my christmas holiday of 2 weeks. Will the dr sign me off that long if I see them next week? My job is only pt but involved a lot of bending and lifting and standing up. These nxt 2 weeks will be a busy time leading up to Xmas too. I feel a bit bad to leave them short staffed but just the thought of trying to work when in a lot of pain is worrying me. I am worried I am improving so slowly when the dr seemed to think a 10 days would be almost better. Without the codeine the pain is very intense sometimes but im starting to worry they will stop this because of the side effects/ addictiveness without giving me something to replace it. I really am keen to get better and return to work but starting to feel a bit upset about all this.
Ameet, I'm thinking of buying a Pilates DVD that has a section which is suitable for over 50s who can only manage to stand for a few moments. Do you think it will help me? One of the comments on the Amazon reviews said that it was more suited to over 70's as it was so gentle - I suspect this is probably the right level of exercise for me to try!
My AS seems quite well controlled at the moment, my knees are less swollen and my sciatica is slightly improved. Ladies, should I give the DVD a go?
Reviving, I can recommend prune juice to help with the codeine side effects. Try drinking a glass of it with breakfast and if nothing happens have another glass after lunch.
I suggest that you ask to be signed off from work by your GP until you need fewer painkillers in order to allow a better recovery rather than risk aggravating your back pain further.
Thanks mouldy I will try it. Sounds a bit yuck tho lol x
Reviving, it tastes better than fibogel (which is what your doctor may suggest).
reviving I agree with mouldy about being signed off for longer. If you are getting tired and increased pain with a bit of moving around, can only sit on the loo for a few minutes without pain, and are taking high levels of painkillers, and your job involves bending, lifting etc, then 10 days off is NOT enough. I was off for up to 5 weeks one time that I had acute pain. You cannot put a time frame on it, and if you go back too early you will only end up back off again, and maybe for longer. I know it's really hard not fretting about impact on work, I am there every time I take time off, but your health is important and you have to get back on track.
re: constipation. Please do get on top of this now. prune juice is fab. drink lots of it, and lots of water and if you have to take stuff from docs, do so. If you don't, and you get too 'full' you will start to feel quite unwell. I had this a little while ago, before surgery, and I left it too long before addressing it, and the outcome was an emergency doctors appt, and a prescription for a diaretic which was like, as someone put it 'taking a sledgehammer' to the problem I thought I was going to die. No shit (excuse the pun) It was quite unpleasant. So, do work on that now.
ameet - what did I miss? was it someone selling something? was it someone being rude?
Reviving, it's so hard to get your head round but you aren't fit for work. Of course your GP will continue to sign you off. I remember this feeling so well. Sounds really lucky that you've got another two weeks hols so that gives you almost a month to relax and take it very slowly.
That's the thing, everything happens very slowly.
Re bowels, I recommend lactulose which you can take up to three times a day. It softens things so easier to pass. Codeine leaves the stools very hard.senacot moves things so it's ok to take both of these together. If you're really impacted which after a week you must be get some glycerine supposition from the chemist which tackles things from the other end! You can buy all this over the counter. I take a slug of lactulose every night.
Ameet gave us all some very smug advice about posture. If only we all stood up straight we'd be fine. Not sure about selling, quite likely.
Thanks so much everyone I appreciate it. I was in a lot of pain when a lady from work rung earlier and got a bit upset even though she was really nice. I was upset to let her down but also I was worried dr might say i can go back while I was still in a lot of pain. But think I was worrying too much probably because I was not feeling well. I do hope can get over this initial painful stage then start doing some exercises to get myself fit.
Another frustrating day. I get woken up in pain about 4 ish took painkillers and groaned for a while then ended up sleeping most of the morning. I did manage to get downstairs several times today but I cannot find anywhere comfortable to sit or lie down. In the end went back up to bed took painkillers and fell asleep again. By evening my leg felt very weak. At least i am moving more and getting up and down stairs.
Have ordered Sarah Keyes back sufferers bible so will look at that when it comes.
Hope you guys are all doing well.
reviving have you tried:
Lying on your side with your knees to your chest, or with one knee toward your your chest, to stretch it all out. I guess foetal position. But with one leg not both. It might hurt to start with but it might help long term.
Lying on your back with several cushions under you knees so you are the semi supine position that matlilda spoke about (constructive rest) those positions were the best positions for me. And still are now (but didn't even knob until Matilda posted that one was a proper helpful position!)
Ok here. I am finding wine helps. Not good in the mornings though
Some bastard rang our door bell at 5am! I didn't get up. I lay there thinking if it were important they would ring it again. And I would then send DH down! I also woke with a coughing fit from this lingering winter cough! So, despite ds not creeping into bed as he normally does, I as awake at silly o'clock. The problem with that is then I feel pain and can't get backs to sleep. Argh.
Hope everyone Is having a nice lazy Sunday. I am managing by using heat pretty much all the time and not breaking my painkillers and anti inflammatories. I bought some of those heat patches and wore one at work, fab! But I did boil slightly as the office is not anyway
And keep an eye on that weak leg reviving if it gets worse think about going to hospital. Especially if you have numbness with it.
reviving, it was after a few nights of being awake and in bad pain from about 2am until morning that I have in and got amytriptiline. A low dose does keep me asleep all night. It's particularly good for leg pain.
Speaking of which...well had a good weekend and out both Friday and Saturday evenings. I had a nice time but Jeez I am so sick of sit, stand, wriggle stretch, sit, stand all bloody night. I would give a million pounds to be able to sit. Had to get up eRly this morning and wS in the pool doing my hydro by 9am. Anyway, after doing just too much all weekend am in grim pain. It's the kind I can't relieve. Had cocodamol and tramadol this afternoon and did sleep a bit but the pains even worse now.
I'm going into London for a lidocaine infusion tomorrow at the pain clinic. I'm a bit nervous, I haven't managed to actually speak to anyone else who has had this done. You have to be closely monitored I believe as it can affect your heart. So early start and yet another day out of the office for DH.
pavlov, thanks so much for the pm. You've really given me something to think about. Think i'llgo for it.
Hope you've all had a good weekend and not overdoing it at this very tricky time of year.x
matilda, reviving so so agree that amytriptiline is great for leg pain. It pretty much stopped my leg pain, it was the best pain reliever for nerve pain ever. unfortunately for me I was particularly sensitive to the side effects and after 5 weeks off work and still not functioning in this world I had to come off it! (and don't do that quickly either, a steep learning curve there). I couldn't speak properly, I slurred my words, I sounded drunk, I simply could NOT get up in the morning, even though I took it at 6pm (which pretty much meant I was in bed by 7:30-8pm as it knocked me out). I put milk in the cupboard and sugar in the fridge, I developed a huge blind spot and lost my peripheral (sp) vision. It was when my GP told me that a) I had to stop driving for two weeks following my periferal vision going and b) I needed to call my insurance company/DVLA and tell them I was advised to stop driving for two weeks and what I was taking for when I started again that I decided to stop it. My eyesight was actually fine, there was just a blank space when I looked over my left shoulder, or for keys, or glasses, or phone. It also messed up my appetite and I stopped eating. I forgot to eat as my hunger pangs never kicked in, I never felt hungry even when I was reminded to eat and I lost 2 stone in 5 weeks!!! So, i guess if you want to lose weight it's great
Intrigued about the lidocaine injection. I have heard of them but don't know anyone who has had one so be interesting to see how you get on. Sorry that means you are our thread's guinea pig though I hope it goes ok, and provides some relief.
Now, a financial support tip. I had a conversation with my water company about bills etc as my water bill always seems excessive. Anyway, that's a different story. one of the things I mentioned was that I use the gym a lot for showers as they are hot and fast (and this was partly why I was annoyed my bill was so high) and I talked about how showers are fab for my disability and it was a shame it cost so much for a shower at home! She said to me this: if I need to use, or it is recommended that I use a shower for medical purposes, ie as therapy, to relieve pain - if a shower or bath is a good way to relieve pain - then if my GP would be prepared to write a letter to support that, I could get my water meter payments capped at a set amount, so once the meter reached that amount I would not be charged any more per month for the water used. She has sent me a form to fill in and send back with Gp letter (or section signed). So, if you are using more water, or could do with bathing/showering more to help with pain then speak to your water company.
Lordy me! Amytriptiline did and does make me a bit dopey first thing but nothing a cup of tea can't sort out. Thinks Xmas' reaction was pretty drastic. Def worth trying. Sleep is so important and lying awake in pain is the loneliest feeling.
sorry that last post from Xmas was me I didn't namechange back from thank you thread.
You are right, absolutely you have to try things, as I said, it was the best painkiller for leg pain that I have tried. I am just quite sensitive to the side effects and GP had to start me on really low dose for pregabalin due to my low tolerance for those meds. I never got above 75mg for that and usual dose for sciatic pain is around 200+mg! Funny how I don't have such low tolerance for tramadol or codeine but I do for diazepam, 4mg sends me into a goofball.
So, yes, try it and normally the side effects wear off after around 2-4weeks, or at least become manageable.
Didn't mean to poopoo it! It also has the added bonus of increasing seretonin which makes things easier to manage mentally too.
I am learning to knit. It's not easy is it? I never knew you could get cramp in your wrists from it
I was put on a very low dose of Amitriptyline for leg pain (thought to be due to ME- now I am wondering if it was my dodgy back all along) and was advised to start on a tiny dose (half a 10mg tablet). Now I tolerate 10mg fine, although I am extremely slow in the mornings ( a part of my ME+ POTs anyway). It did not help with getting painfree enough to sleep to start with but did after a couple of weeks. I have put on weight since being on it (but have also had quite a lot of steroids for asthma which make me ravenous).
Pavlov I am over sensitive to lots of things too! I wonder if there is a connection?
Good luck tomorrow Matilda. Lidocaine is used as a local anaesthetic I think.
My legs get weak when I stand for a short while - not so bad if moving. Then I look drunk when I start to move again. Again I don't know which of my infirmities is responsible!
Thanks all. Yes lidocaine is a local anaesthetic. But it's being given intravenously in a bag over an hour or two I think which feels weird to me. Still, willing to be your guinea pig...
Amytriptiline is a bit of a head fuck, it works but does make you feel stupid. I can tolerate 20mgs but do have to drag myself awake. When used for depression, which was its original use, the dose is 150mgs. It's no wonder psychiatric patients used to look like zombies. Thank god better treatments are available now.
Early start tomorrow. Wish me luck. Annoyingly the journey is a bit of a killer, sitting in the car through the London rush hour so likely to be in bad pain regardless of any infusions. Hope they do good tea and biscuits.
Thanks again for you advise I will talk to dr tomorrow, I actually had really bad leg pain earlier after sitting on the sofa. But side effects sound bit scary.
matilda good luck with your injection tomorrow. I hope it really helps x
Funny thing is though reviving I could take tramadol with no side effects really, not huge ones. Where, others can't take it at all as it's too strong. I got used to that very quickly indeed and on occasions took 400mg of it and could still function fine. I expect I did a lot of smiling, and I know I did much more talking, but I could work on low levels of tramadol day in day out where I could not with the nerve pain blockers. One of my colleagues who has spinal stenosis is fine on gabapentin and can work no problem, but can't take codeine, so it's all so different for each of us, you have to try different things. Leg pain/sciatica is so hard to manage, as normal pain relief doesn't really touch it so be prepared.
matilda good luck tomorrow. magso it must be so hard to not know where one condition stops and another starts, especially as chronic pain such as back pain screws up energy levels, and ME causes chronic pain of it's own, it all crosses over for you
I really need to go to bed but need to post here so I find it again. I've been successfully ignoring worsening SI joint pain for about 6 years but this thread has scared me into going to the GP. I know I need to, I just don't want to!
hairy waves. Sorry you are suffering, but you are very welcome here.
I have had an almost pain free day wtf?! I mean not complaining, but really, really impressed and surprised. And, bloody hell did I notice the difference in my mood! Wow! I actually felt quite happy! Sort of bouncing, singing in the car, smiling, laughing at work! Remained ultra cautious and have been expecting it to return all day. It has a little bit this evening, but nothing on the scale it has been. I sighed earlier and DH said 'back hurting?' And I said 'not really! Just tired!' (And I am really exhausted).
I have done the following for a few days, since Wednesday.
1. You will tell me off for this. I have doubled my anti inflammatories. I have also doubled my omeprazole ! I am going to speak to GP and see if I can textually go higher on them. He had told me to double my night time dose, but to miss one out in the day instead suggesting he won't like it....
2. I have used heat, almost constantly, including listening to your wisdoms ladies and been using those heat patches! But, at home using hot water bottle almost constantly, and staying in the shower too long, hot baths. It has caved me wonder, along with other people suggesting it, whether my increase in pain has coincided with weather changing and it's the cold making me hurt more? Does the weather affect anyone else's pain levels?
3. On several occasions I have been wide awake and up at 4am due to back pain, a cough and a pain in the bottom 4yr old coming into our bed. So, I have taken my double dose of anti inflammatories, and some Codiene then and gone back to bed. I have been bad and not eaten with them ate that time, so that's not a good solution long term, but it has been easier to get up in the morning, to get moving doing my exercises, and I think mentally I have been in a better space when I get up as I am not in as much pain. 4am is around when I wake up 4yr old or not, I just try harder to get back to sleep, but it's around then my pain becomes a little too hard to ignore, I wonder if my ds never woke up then if I would sleep through it, but now my internal alarm always wakes around that time.
It all seems a bit too much to manage every single day, so will see how long I can go with the effects of the above (not sure which helped most, or a combination of all) without doing it for a few days. Toward the end of the week I will do it all again and see if I can keep things at bay.
matilda how did it go?
Everyone else? Are you all ok? Any news on MRIs, appts?
Lidocaine infusion was fine. They attached me to a heart and blood pressure monitor then put in a cannula and pumped the lidocaine in over an hour. I felt normal. Was ok when I got home but then fell fast asleep so I know why driving was forbidden! They said it could take days to kick in if at all...all a bit woolly. I'm not holding my breath. Anyway had a nice lie down.
Pavlov, how fantastic. It sounds like the combination of pain management has helped. I hope you can sustain it for a while. I get the odd inexplicably good day (hope yours is not one day!) can you take your 4am pills with a half cup of milk? I keep milk in our room overnight and it's fine. Also are your anti inflammatories enteric coated? Heat does indeed rock.
Hairy, nice to meet. Hope your GP is helpful.
Hope everyone else is quiet because they're busy having fun.
I am stuck on mumsnet! Had a bad night but took painkillers managed to sleep a bit. Then slept all morning. Came down stairs and have managed to find fairly comfortable position, which is great progress! but now can't get up! Dh has gone for a rest he is on late shift so I am just stuck here! But not in pain unless I try to get up.
The funny thing is I still keep wondering if I am imagining this is worse than it really is, and i could do more if I wanted.
Phew managed to get up by using extra cushion. Now drinking prune juice. I am not keen on it!
I must keep getting up more often so I don't stiffen up.
Hi, I'm hugely late to finding you ladies, but thought I would say "hello" anyway.
I'm a 32 year old mum of 3, (6, 8 and 10 years old). I had SPD with my last baby and ended up on crutches from 18 weeks. The pain since then has changed from my front/pelvis to my back and shoulders, so I'm not sure if it's even related, but I've pretty much been in pain since then. I've paid for private MRI's after being dismissed as "just being in pain from pregnancy" and an old break was found at the base of my spine, this had mended but made too much bone which has joined a couple of facet joints and done some nerve damage. After a short NHS wait (19 months) I had steroid injections, but these did nothing. The pain worsened and went further up my back so I had a full spine CT and MRI. This showed a disc gone in my neck, one in the break, and another 2 spaces above that. Another 2 are bulging in my shoulder blade area. The ortho consultant looked at the scan, declared there was nothing surgically he could do and sent me on to pain management. TBH I had high hopes about this, but was bitterly disappointed. His verdict was although I'm in a lot of pain and it will only get worse I manage ok from day to day and there's bugger all they can do apart from meds. He doubled a dose for one and said come back if the pain changes drastically but not too bother if it was "just" getting worse. Then he discharged me.
That was 2 years ago and, shock horror, it has got worse and I now take 4 different meds a day which total 26 pills. God help my guts, I think they must be made of steel! The only problem is even though I rattle, like many of you I'm still in a lot of pain which affects everything I do.
I would love a name or cause for my pain, but I'm not sure that's ever going to happen and I'd still be in pain.
Hey ho, whinge over!
cowmop' hi! what a horrible situation. Sounds very painful for you. I know how you feel about the meds, there's no alternative though, is there?
Your surgeon actually sounds quite sensible in not offering surgery.where would he begin? Do take some hope, though, that discs can and do improve eventually. In what way were you disappointed with the pain course? I found mine good although I'd reached the point of truly knowing that conventional medicine wasn't going to cure me. It must be very hard with such young children, even with an enormous amount of support being a mum is very physical. I hope you do have a lot of help.
Do come back and chat to us. Pavlov has young children and will be able to commiserate with your difficulties.
reviving glad you're a little better. Try to keep moving, potter gently, rest, potter. It does help, promise!
Off to afternoon tea with my inlaws plus two other equally ancient aunt inlaws. Who said not working was easy?!
Has anyone tried hypnosis? I have had a download for something else before from these people uncommon knowledge and found it fairly helpful and very relaxing, they have a hypnosis for anything you can think of lol. It might be helpful just from the relaxing quality so I may try one. If I do will let you know.
cowmop I am surprised you can move at all. You will get helpful advice on here and can have a moan.
matilda are you noticing any benefit from the lidocaine yet?
matilda I was disappointed with the pain management as it just wasn't what I expected. I thought I might get something like you describe attending and maybe some physio/hydro. It was actually just one appointment where the doctor read my notes and a questionnaire I'd filled in, said he agreed with the ortho (and I agree he was sensible in not being gung ho with his scalpel!) regarding surgery, reviewed my meds and said I didn't seem depressed and was coping despite the pain so he couldn't do anything else for me. Bye bye!
At the moment I get pain most of the time but at bearable levels with bad/totally shit days mixed in. I'd like to take less pills if I'm having a good run, but have had to increase the dosage of most of them slowly so am not sure which I can take just when needed. I wonder if this is a question for the pharmacist rather than a doctors visit.
I'm very lucky on the help front, DH works shifts and DM comes round frequently as well as doing all my ironing - this in itself is almost worth the bad back! Standing still is guaranteed to wipe me out for days so she is an absolute life saver.
Enjoy afternoon tea!
reviving I've tried everything apart from hypnosis! Anything is worth a try at least once isn't it?
cowmop there is a hydro pool near here and I went to it once when I had a bad back before. It was lovely like a big warm bath, but I found getting back out of my swimming costume hurt my back again!
cowmop oh wow! you poor thing! I have had one pain clinic appt in the entire time I have struggled with back pain, which is nothing compared to so many people here. He offered me an injection but wanted to wait to find out about surgery from my neuro appt the following week and then it never was followed through. My GP has referred me again, but the letter I got for 18th Dec is apparantly a 'follow up' from my initial appt with them in June this year!
cowmop, no wonder you were disappointed! that wasn't a Pain Management course. It was an appt on a pain clinic with someone not terribly useful! It would be worth ringing the clinic and asking if they do actually run the courses. I had to ask for it. The consultant I saw at that clinic wasn't terribly helpful and looked quite surprised when I asked. I think he thought that as a HCP I'd know it all (no, absolutely not.)
Glad you have help. If you look up thread there is a link to a website for the Alexander Technique and a ten minute exercise called Constructive Rest which some of us have found helpful.
I agree it get confusing about which meds to increase or decrease. I basically take the anti inflammatories, gabapentin and amytriptiline at a set dosage then I increase or reduce the codeine and tramadol. However, I've noticed that if I feel okish and need little or no codeine for most of the day the pain will be really severe by the evening. It just catches up with me..
reviving, never tried hypnosis! might be interesting. I'll ask at the clinic next time. Wonder if it's available on the NHS? No sign of the Lidocaine working yet. They were very non specific about when or how much benefit I would expect. I believe it's good for fibromyalgia pain.
I do apologise for the crisp ending to my post...DH called me for help, I pressed 'enter' instead of leaving it. I had more to say and I got pulled in to help with dinner! I will finish it off later as now dealing with two tired hungry kids as my roast took much longer to do than planned!
It tends to be the codeine I mess about with as well matilda I also take pregabalin, Nefopam (my GP's just upped the dosage to try and control the nerve/sciatic pain) and Naproxen. I used to take Tramamdol as and when and did find it one of the better drugs, but I started having seizures a couple of years ago and they can't be taken with the epilepsy meds I've been prescribed - told you I rattle!
I'll have a nosey at the Alexander Technique, if it's anything like Body Control Pilates I could give it a go as I really enjoy it.
pavlov I had to really fight for my injections as the trust I'm with had stopped funding them. I only found this out after waiting to hear from them for 12 months as I was expecting a bit of a wait. In the end I went to PALs and ended up on a ward with 6 other ladies who had all had similar experiences and wait times. Not one of us had been written to to say the treatment wasn't available or offered any advice. Makes you wonder how many people slip through who might have benefited. Hopefully you'll get yours soon.
reviving I hadn't thought of that! It would definitely be no good for me on the days poor dd has to help me get my knicks on!
I can't even remember what I was going to say earlier in my other post I read it through, and completely forgot what I was going to say.
Had two days of greatness, low level pain. Woohoo! And what does that mean? try to do too much. including pulling out a broken kitchen draw full of shite. Not a good idea. now, searing pain down legs. I won't learn eh?!
Has anyone tried magnets? I bought a magnetic belt, to use with ice/heat pads, but they don't fit it the magnetic belt is allegedly good on it's own, but I am suspicious about it! Not read a lot of actual positives about magnets, suggesting the level of magnetic pull to make a difference is too much for a human to withstand, and saying if it helped blood flow that well, an MRI would not be a good idea oh well.
I did, however, get that cushion from Lidl matilda the children love it, it's perfect for my 4yr old, who was sent home early from preschool sick today (he is not sick, he had a runny poo. he is absolutely fine) and lounged on it. I have not used it yet, but it looks great!
I did buy the backpain hypnosis download and as I thought it was very relaxing to listen to, even though my back was hurting a bit at the time. I think it will certainly help a bit and over time may help to learn to relieve tensed muscles that may aggreivate pain and learn to release some of the cramping. It is also supposed to help you lessen your perception of pain but not sure about that. It is not a magic cure but I think it will be helpful. They also had some other titles that might help others such as manage chronic pain and relief for neurological (sp) pain.
Also I got Sarah Keyes back sufferers bible today and have started reading it, it is a bit hard going for me poor old brain, even though it says it is in everyday language! Well it is, but I guess I have a lot to learn..
I have a copy of that book somewhere. Haven't looked at in recent years so cannot remember much, but I based what I do to try and keep mobile on it. Probably time for a reread I think!
I have a low currant therapeutic devise which sticks to the skin. I am not sure if it helps or not. It certainly doesn't help with pain on an immediate basis, but might over time. I think it is supposed to help with healing. I am still not sure but I tend to use it when in trouble.
Very stiff and sore today and coming down with a cold, so extra headachy.
I will be interested if your hypnosis tape works. I was given a CD as part of my mindfulness course (from the cronic pain clinic for CFS etc). Again I am not sure if they help, but use the principals sometimes - but not every day as I should. Its a pity we can't do a proper trial between us to see what combination helps most!
Sounds as if the hypnosis and mindfulness things are very similar. Problem is it helps when I'm lying on my bed and not in extreme pain but no use whatsoever when trying to buy food in M&s yesterday when so gripped with pain I was reasonably happy to call it a day and die. Gladly that didn't last but it's those everyday situations that are so hard to cope with. I can get it under control lying on the bed but that it hardly living...the cause of the sudden flare up? A bowl of soup in a pub with a friend in a pub.
I bit the bullet yesterday and made the initial phone call to apply for PIP which has replaced DLA. When the form arrives I'll be looking for all advice in filling it out. I can do most of the things but spend a fortune on additional help and endless favours from friends. I just haven't fully got my head around disability. It's not all about wheelchairs and very obvious problems. Look at me and you'd think there was nothing wrong.
Sorry. Rambling. Have a good day, all.
I think you are right about hypnosis/mindfulness used regularly they probably do help overall and might help you reduce need for drugs when you are in mild discomfort, perhaps help you tire a bit less quickly that kind of thing. But it is not going to get rid of that really intense pain.
I have a friend a bit like you matilda with m.s she is youngish, looks fine but sometimes struggles to walk so has a blue badge for her car. She says she is constantly getting rude remarks and looks about this and it really upsets her.
Yes definately get that PIP these disability aids are so expensive for one thing. I can barely afford my extra prescription id like to buy a few of those aids just for a few weeks but of course that would be impossible, but luckily I hope to be well soon. Then there is travelling to medical appointments and things. But the expenses really do mount up so you do need it. All I know about the forms is; if one day you can walk say 50 m and another day 500m always put the lower amount when asked how far you can walk etc. I learned this from a book about how to be a carer.
I agree the mindfulness CD is only useable when doing nothing in a comfortable condition- not walking around doing things that need to be done like shopping. I think the micro currant devise just warms everything up.
matilda when you fill in your PIP, you have to 'take away' all that additional support from friends, family and others, that help you keep on managing day to day. You need to then say to yourself, once you have stripped that back in your mind 'now, without any of those favours, additional help etc, can I manage day to day'. PIP is to aid independent living. It is not recognition of a disability in itself, it is a recognition that your disability affects you physically and incurs expense (although PIP has been slated, the principle of financial support to those hugely disadvantaged by disability is the same principle).
The best way to do forms like this is to step away from it being 'you'. and answer those questions as if you were doing it for someone else. what would you tell them to write? Would you tell them they are managing fine, would you think they tended to minimise the impact of their disability? I fill forms like this (but not this) most days at work, I do risk assessments relating to people's behaviour etc every day and have to strip back my assessments and evidence it all, think in ways that are similar to these forms. I also help with ESA forms, housing forms etc where I need to get someone moved from bottom of a hostel waiting list to the top. It means being really, really clear about how their needs can be met. So, what I am saying is: ask me for help with any questions! I am quite sad in that I love this kind of thing. And, allow a week to fill it in
And you definitely never ever ever say you can walk 50m. I am not sure how the question is worded in PIP, but in DLA it is worded 'xM without severe discomfort' or something like that. Well, in that case, the answer would be, for you, 0m for example. My understanding with PIP is that they have reduced the walking level to 50m or less, and you need to be awarded 12 points to get the mobility element. Do not consider that because you have a rare day where you are able to walk more than 50m that you can therefore do it. You need to say no to that question if you generally cannot walk far without any aids.
I have seen a scoring sheet for PIP to give you an idea how the questions are weighted, helps you think about how they will view the form. it's very much like a job interview - You are not being untruthful, but are emphasising the areas that are relevant to that application, concentrating on the areas that get you more points and a better chance of that job, that you know you can do but have to prove it.
I have had a few good days. night times are not good. I continue to double dose my anti-inflammatories, so I guess that inflammation is a big cause, which gives me hope for the injection working, if they even offer it to me this time.
I had a really good day Wednesday, and maybe slightly did too much, it didn't feel that much at the time iykwim but I sat downstairs all day and carried a few lightish things about even when it was getting a bit sore. Thursday I felt a lot worse and I had to reduce my codeine as my next prescription could not be picked up for me until today and I was rationing them but I can really feel the difference on the lower dose. Dh can pick up my next prescription today and I will go back up to 2 30mg at a time. I am a bit worried about whether I will be in pain a lot if I have to stop taking them before I have improved, also there is a worry about cost as I have to pay for them.
I had to give up on my hypnosis tape halfway through yesterday as I was feeling too uncomfortable to relax. But I will keep trying it I think you need to be able to listen to when not in pain though which might be a draw back but hopefully when I get the right dose of codeine I will be ok.
I also think I will need to take more rests lying on the bed even if not too tired and not try to carry anything if at all uncomfortable. Its hard because we are all finding it difficult with me not doing my usual stuff, dh works long hours and its hard for him to fit in the housework and dd wants me back to normal and gets a bit upset. I have realised I normally do too much for her and she can be a bit lazy though so going to work on getting her to be a bit more helpful and independent.
One good thing is that I have so far lost 1 stone in weight (in 3 weeks). I know not a very healthy way to do it but I do really need to lose weight and have to lose a lot more, and hopefully if I can keep losing it will be a big help to my back in future.
hello ladys i have cauda equina due to accident ,i was on a pub balcony and it fell 12ft to the concrete floor. [ouch] broke my femur had a nail pit in my leg also had a pe due to been bed bound.also broke L1&L3 bones in my spine had a laminectomy [sp]was in hosp for 9 weeks could not walk wen i came home my dd had to wipe my bottom for me ,now i can walk short distances ,sometimes use one stick but now the cold weathers in my backs is sooooo painful. [ps sueing the pub they have admited liability] but to be honest id give it away ,its left me with perminant nerve damage and probs whith my bladder and bowel its 10 months today since i had my accident but still along way to go they say 18-24m befor i get back on my feet x
ilovesprouts, you are not alone. Hopefully you still have a long way to go in terms of recovery. I have some mild bladder issues due to nerve damage. Hey, the world's still turning. It's crap, though and your problems sound much worse than mine.
Lots of us here love our hot water bottles especially now it's colder. Heat patches, too. Then the drugs, of course.
Long term physio really helps me. Half massage (bliss), half hard work.
Hope you have good support and a good lawyer.
thanks i have a very good lawer .matildathecat i was not the only ione who was hurt my 3 friends was hurt also the pub land lord too.
Hi sprouts I sometimes feel a bit wrong to be moaning about my common or garden bad back when there are people on here with really bad long term conditions like yours. But everyone has been lovely and helpful and it does help to have a moan. Also it seems like the same things in different combinations help most back problems. With a long term problem it is just finding the inner strength to keep going and finding ways to enjoy life so I hope you are managing that way and that the money when it comes will also help.
Whilst rubbing some ibuprofen cream into the sore area of my back I felt a smallish lump, not near the spine but in the middle of the sore left side of my back. Is this related to the pain? I read you sometimes get knotted muscles and things that can be felt? Should I do anything to it?
If you can stand it you could get a tennis ball then stand against a wall with the ball between your back and the wall. Then slowly roll yourself around using the ball to massage the sore areas. It can hurt like hell if you get it on a know but really works. My old Pilates teacher used to get us doing it in class. Lots of bizarre moans and groans!
It's basically a homemade deep tissue massage.
I'm lying on my bed trying to summon the strength to apply festive adornment to the house. Hope you're all having a good day.
im doing ok will be long slow process but i will get there. i can see how far ive come since april. its the numbness thats the prob but im ok x
I am guessing that you figured out the very longwinded post was mine? You will probably always tell it's me if I name change as I talk toooo much
Remarkably, a very bloody good week pain wise. Not sure what's going on, and suffering a bit today, as alcohol is great for relaxing things, but seems to increase pain the next day not sure why, but had a work 'do' last night, drank lots of wine, didn't fall down drunk, or make a fool out of myself either, by attempting to climb onto tables or dance or something else that would see me stretchered to A&E . So, I know that things are still not 'right' as there is still pain there, mostly in my legs, and I can't get into sitting without using my arms to lift me down (as found out when attempting to sit down with a sleeping baby in my arms and nothing to hold onto with the free hand, the mother of the baby had to help me sit down to stop me falling down with baby! But, the scale of pain is enough that if this is how it is, although pain free would be better, I could live with this, if I have to, with no more surgery. But, I do get so very very tired now.
Can I ask a question about the injections? I can't remember when I had the last one (caudal injection that time) whether I could go to work the next day, as it hurt for a little while before working (for like two weeks). I am seeing the pain clinic on tuesday and while I am not really anticipating them offering it to me there and then, they did last time, and so it's possible they will this time. I really would prefer to have it, as the last two christmases I have not been able to stand straight, and I would love to be able to actively participate in this year, if it sorts out my leg pain, I would be so happy, even if it only lasts a few weeks. But. I have a LOT of work on next week and my manager has just cleared my diary on wednesday for some urgent work to be done after I complained at feeling a little overwhelmed, and then finding I am officially at 125% in terms of my workload!
which actually means more like 150% . I had told him already that I might need the wednesday off, but when we met yesterday to discuss my workload I forgot all about the injection and so my week is stacked. But, if I don't have the injection I will have to wait weeks for another appt. If I have the injection on tuesday afternoon, can I work on wednesday morning? Sitting down for 5 hours....
ilovesprouts oh wow how horrific for you you are very welcome here. You will get fantastic listening ears, advice, support, somewhere to complain about how shit it all is, and sometimes we have fun too MN has been my place of sanctuary through my own struggles with back problems, which are nothing compared to your situation, held my hand, given real advice, listened to me go oooooooon about stuff. And let me talk. And I do that quite a lot...
matilda how are you feeling after a few days of the lidocaine injection?
How is everyone else?
reviving did you try the tennis ball massage? did it help?
Hi all, I'm off to a spa today, just myself and my very dear friend for an over nighter. It's a present to her for all her support for the last 22 months. Fuck, I can't believe it's that long. So I'm now exhausted with pre spa prep!
pavlov, no! Surely not injections on the same day!! It's customary to have a wait of 4-6 months isn't it?
I've had several injections and got slightly different advice each time but basically you should be fine for work next day. Do suggest not sitting for five hours should you wish to continue your excellent run of luck.
I've got loads on this week. Managing pain, activity and calorie consumption is a full time and arduous task. I also get absolutely exhausted I'm sure it's just that every single thing we do requires soooo much effort even if we don't realise. Thanks very, very much for your advice re the PIP claim. The form hasn't arrived yet but I will be asking for advice. There is a chart showing the point system on the CAB website so I will paying attention. Do you even get a car through Motability? I doubt I'd qualify but hey, I'm gonna try. I also have a pal who has a disabled son and has a lot of experience with 'the system'.
sprouts, your accident sounds absolutely horrific. You must be so traumatised. I hope you get a massive payout, but more importantly that you continue to recover. Are you working etc? Also, how are the others? Sorry, I'm just being noses but you have my total sympathy.
See you all later. Don't worry, I'll be fine with all my pampering .
matilda I'm hugely jealous of you having a spa day. Hope you have/had a lovely time. The one and only time myself and a friend tried this we ended up going to a place in Birmingham. My mate had got the wrong address so having schlepped across the city we ended up running in the other direction so we could make our appointments on time. Then running back across to get the train home after. This was cancelled and so we ended up crammed on an overfull train sweating like pigs. Ahhh, it really was the most relaxing day . To be fair we were both very early twenties and a bit
I'm glad you're having a good run Pavlov. It's great to get a break from the intense pain, even if the background hum is still there. Here any good days or weeks tend to be whispered about incase the pain fairies hear!
sprouts it sounds like you're having a right old time of it. I hope you're recovery is as full as possible even if it is a bastard at the moment.
I'm having a bit of a fed up day myself. Upto a couple of years ago I had my own business buying old Land Rovers from all over the country, and could spend whole days taking them apart, cleaning the parts and shipping them off. Today I made stained glass window biscuits with the kids for all of twenty minutes and now I'm buggered. It's a real pisser. How can you go from a fit twenty something with a manual job to a drug dependent wreck in just a few years? It worries how much I need the pills and that I'm on the maximum dose of everything and still struggling.
Sorry, I shouldn't moan and I know there are lots of other people in much worse positions than I am (and am reminded of this constantly when reading MN). I just wish I could make some sodding biscuits!
oh yes to not having the ability to do what we used to. It really sucks. We have just been on a train journey to the North Pole with Santa. My DD aged 7.5 was desperately upset that it was not the North Pole, and that, although she knew it was not really going to be the Real Actual North pole they did not pretend to make it look like it. She is starting to lose some of her belief in things but wants to believe, and is happy know it's pretend if effort it made. She felt properly duped and was in tears! Glitter tattoos made it much better though but, I am wiped! Leg pain has increased a lot, back is a bit stiff but nothing huge but I have mountains of housework to do and my energy levels are zero. Not helped by not sleeping pretty much at all (partly pain at night, partly a DS who has a cough/wants to snuggle with me all the time night and day). I think I am suffering from my night out, party animal that I am (at home before 10pm!). Once upon a time I would be up at 6am, clean the house, make stuff with the children (cakes, art), go for a walk, go for a bodyboard, get stuff ready for work/school. Now, I can't do that. And this time of year, I need energy and no pain!
matilda so jealous! spa. Aaaah that would be so lovely. I do go to sauna occasionally, but it's too manic with Dhs new job to get time. Hope it's lovely and get properly spoilt! re Motability, I think PIP mobility level is either you get it not? DLA is low/high level and high rate is eligible. So with PIP if you get it at all you should be eligible for Motabiity. My understanding is that you have to have 1 year of award to be eligible, and as the lease is 3 years, ideally you need 3 years, or at least be confident that at the end of the 1 year it will be renewed as there is no option to purchase the car at the end, you have to give it back. Ford do reverse sensors as standard in their motability cars, which I love the idea of as I can't usually turn around to look out of the back, I rely on my mirrors to reverse. And you can get automatic, and have it adapted if needed to make it better to drive with your disability. A brand new car is soooo much easier to drive with back problems than an older car. I had a hire car from work a little while ago and it was so lovely to drive, gears were not tight, gear stick and handbrake were higher up, pedals didn't need pressing so hard. Lovely.
You are right about the injection. I am not anticipating getting it on tuesday as that would be too efficient! But, I know if I don't prepare for it workwise it will be offered and I won't be able to take it!
cowmop I think it was you who said about a friend who gets looked at funny as she doesn't look disabled? I know two people who have blue badges due to their conditions which are hidden, other than through back problems. One has MS, and largely this is under control, his DLA level is care component as his mobility is relatively good (for now) but he cannot control his bladder and so he needs to be able to stop and go to the toilet at any time. This means he doesn't really go out, but he has a blue badge to give him more freedom to get out of the car quickly. He gets comments all the time about 'not being disabled'. I have another friend who has Chrones disease and despite no obvious mobiity issues he also has to be able to get to a toilet quickly with no warning and so although he doesn't get DLA he is eligible for a blue badge. His attitude is much more 'fuck you' when people make smart comments just shows that there are so many reasons people's conditions mean they get the 'privilege' of a blue badge, but it makes so much difference between not going out, and going out occasionally. People can be so bloody rude though.
Hope everyone is having a reasonable day
im just hoping my cauda is not permenant had it since feb/march ,i only went to the bloody place for my dinner still feeling very bitter ,
Matildathecat one freind broke her wrist had 3 ops so far ,another had to have her kidney out and another smashed her face in and broke her arm and still needs more ops due to damaged eye socket also she has some brain damage x
Bloody hell sprouts, that's a lot of lives changed in just a few seconds isn't it? I hope someone will be held responsible for it and that everyone involved is ok in the long term.
omg sprouts that's horrendous. Utterly horrible, poor you, poor your friends. Good luck with the legal stuff. re nerve damage, I was told by my physio that any nerve damage still around after 18 months of accident/surgery/injury/incident would probably be permanent. I was told this though not from the time of my prolapse by 18 months from surgery, but I suspect it's from the time the nerve was trapped. I really hope things improve significantly for you, but in the mean time have a <passes a hot water bottle> we use these a lot here
Does anyone here get cramps? I can't figure out if it's linked with nerve damage. I have always got the odd cramp in my toe or foot, in particular one toe that sort of dislocates with the cramp, goes out at a funny angle. But, since my back has been bad, this toe in particular, also my foot, and my calf, cramp regularly, almost daily. Not so much in my right foot, always always in my left foot/leg. Wonder if it's related to change of movement/blood flow or something? It bloody annoying that's for sure.
And. This is something that people will have read about if they ever read my other moaning threads about my poor ol' back. But, does anyone else ever get flu like symptoms just before an 'episode'? Prior to surgery, this was almost always a sign it was about to 'go', like a few hours before, flu like tingling/pain through my entire nerves, not just legs, but in my hands too and I would feel a little unwell. Then, within a few hours of that happening I would do something ridiculous like get up from the sofa or sweep rice crispies from the floor, I would be in agony, unable to stand straight or move. I have never figured out why, everyone professional looks at me like I have lost the plot, but I had wondered if it was the gel type stuff leaking from tear in disc. I have not had it since surgery, even though my back has 'gone' a few times, and I have been in agony, the same pattern has not followed and that would make sense as the 'tear' was cut away I think (although technically, wouldn't that leave a 'hole'? or do they cauterise it?)
Except today. Flu like feeling (but not ill, not actual flu, just that nerve pain of flu, if that makes sense?) increased back and leg pain. Just, not gone fully yet. Praying, praying it is not a sign of it going properly again. I can't take this week off work. I cannot cannot cannot put the work I have this week onto colleagues, just before christmas. It would be so horrible for them, and my name would forever be Mud.
But, I am going to keep chucking it out there to you back sufferers, maybe one day someone else will come along and say 'it's this! you are not mad! I get it too and this is why...'
I say medical professionals, I have not fully explored it with them other than tentatively with my GP and a physio, who looked at me quite perplexed and I have never mentioned it again, for fear of being seen as talking complete rubbish. Which I know I am not.
pavlov I think I'm with you on the flu/feeling rough type thing. I always assumed my back was worse because I'm feeling rough, but you could be on to something!
I always feel slightly fluish and generally run down and utterly exhausted when I'm in a flare but mine is inflammatory arthritis mixed in with some osteo.
Why oh why, oh why is my back so uncomfortable downstairs during the day that I have to keep going back to bed for a lie down, but during the night I can't get comfortable no matter which position I lie in and can hardly sleep. This despite all the painkillers?
I hope you all had ok weekends. Mine was a bit difficult as my post above showed! Today I feel slightly better, managed to walk to the car and practised sitting in it. Hurt but managed so arranged for dh to drive me to dr but then found out there are no appt till after Xmas! But I am going to speak to my dr by phone hopefully tomorrow.
Have been trying to gently exercise back by doing the exercise in back book where you pull knees to chest and gently rock. Even this is difficult as it is hard to get my knees up. But I have been doing alternate knees if I can't get both up. Any advise on this it looks like I won't see anyone about my back till after Christmas so I would like to carry on trying to exercise, I have the book pavlov recommended Sarah Keyes Back Bible. I am also walking about the house quite a bit when I feel ok.
http://youtu.be/SRrI8CvrtM8 this is wat happend if anyone wants to look the place has admit liability tho i will never set foot in that place again we have not had anycontact with the place not even a sorry or hoew are you all .
Oh my, I have the cure for us all...we need to move into a luxury spa! It will make you feel so lovely you won't care about your silly old back.
So fab until I saw the bill and almost had a heart attack on the spot. Oh dear. Maybe once every ten years or so which leaves quite a lot of days I'll need to manage as usual.
reviving, you sound as if you are really making progress. It's slow but you do sound a wee bit better. Here are some basic exercises
But personally I wouldn't do the extension one. If you've got a disc prolapse it will probably pinch it and make you more sore. Rolling the pelvis gently and gradually rolling into a bridge is a great mobiliser as are gentle roll downs with soft knees ans the knees rolling side to side.
I'm really horrified by your surgery. Ours guarantee a same day appointment if you call first thing. Is there any way you could see a private physio a few time? Likely to be more use than GP. Re your meds you can ask for more on each prescription if you are needing to renew frequently. To make you feel smug and abstemious I get 200 cocodamol and 300 gabapentin each time. I've also got a prepayment card which is cheaper.
sprouts, wow! how totally awful. Are you still in a lot of pain? I hope you have had all the best possible referrals. If going down the legal route you can charge it up the claim. Do ask your lawyer if not sure. I'm also going down this route and am accessing private physio etc.
pavlov, thinking logically I guess an increase of inflammatory cells circulating is going to make you feel unwell? Need to do a bit of revision , but seems a reasonable conclusion. Many times I've had symptoms that don't quite fit but doesn't make them any less real. When my disc was dripping I got vile pelvic sensations but only one doctor ever made the connection.
Thanks miranda I am glad you enjoyed the spa. What we all need is to win the lottery!
i will try the exercises. I don't think i can afford the private physio but will have to look into it. My dr is very nice when i do speak with him but i have never met him in person. But he may give me enough pills till after Christmas hopefully.
sprout i can't click your link but it sounds awful. How do you get on day to day?
Well the dr said he would squeeze in my appt but this meant I had to take it at a difficult time. Dd carol concert is only 40 mins later. I can't sit for long so was going to have to miss the concert, but now am really worried this will all go wrong and am scared of being stuck waiting somewhere in pain. I have had a bit of a difficult day pain wise. I'm just so uncomfortable I can't sit still. Hopefully this will go ok and the dr be able to offer something helpful. Also sad I will miss concert.
reviving sorry about the concert it sucks. Not trying one up manship but I've missed, among other stuff, my son's graduation and my best friend's 50th birthday party.
If you have time, please work out exactly how much of each med you are actually taking so your GP can give you enough. Sometimes they prescribe on autopilot IYSWIM. I'm really astonished it's the first time he's actually seen you! You've been in severe pain for a good while now. Please explain exactly how bad things are and push for a physio referral and an MRI.
If you are in agony when you get seen that's no bad thing (other than for you). Good luck.
sproutscan you re link? Keep chatting here, we do understand. Hope your pain is under control and your nerve damage not too catastrophic. I totally get your rage at the hotel's indifference. They might have been instructed by their lawyers not to contact you. I've had a similar experience and have found counselling quite helpful. I've learned that I was suppressing my rage because I was scared of how huge it was. What I need to do is to let it out and realise that it won't kill me or consume me. In time it really will lose it's strength a bit like a storm blowing itself out. Hope that makes sense. You're still left with the damage, though, unfortunately.
pavlov hope your appointment went well.
cowmop, what an interesting job! It is indeed so hard to accept let alone like our new lives.
well I already saw the dr it was quick! It absolutely killed me riding in the car. The dr could see I was having problems walking anyway and couldn't lift my legs up on the couch. He said this is sciatica. He has given me naproxin as well as codiene so I hope this will help me. The physio service here seems a bit weird you have to ring in, then they ring you back and talk to you over the phone, then either send you exercises in the post or a further appointment if necessary. So they certainly don't rush out to give you a massage lol.
i do feel a bit bad moaning on here when everyone else is probably a lot worse than me! But it does help to moan and you all give very helpful advice.
can anyone copy my link for me its further up the page thanks x
i can walk short distances but then my back/hip starts to ache wen i sit for a while getting back up my legs/backs stiff and the numbness ive sort of got used to it now ,like i said in my other posts i could not walk wen i came home so all ive done really well i could of been paralized !!.
reviving the physio system is the same here as well. After a chat on the phone I got an appointment pretty quickly, but the lady I saw was a bit pants and I've ended up paying privately, luckily DH's work have cover upto a certain amount per year so this goes a long way towards it.
Oddly, I'm lucky on the prescription charge front since I developed epilepsy as it's exempt. At first I tried to pay for the pain meds separately thinking it would only include the epilepsy medication, but no, it covers everything I take (at the moment 30+ pills a day.) So every cloud has a silver lining it seems. Even if it does come with the down side of seizures and not swimming in the deep end!
Think of me tomorrow, I've rather stupidly agreed to help out on the school trip which leaves at 9.00 and returns at 6.30. I was having a good week when I said I'd go, but couldn't stand long enough to do the dishes tonight. Should be fun. I don't know about everybody else, but I tend to do this a lot. I think I'll be fine and will manage and will indeed have to manage tomorrow, but will pay for it over the next week or so. Especially my ears which will take an almost constant stream of "I told you so's" from DH! The thing is you just want to do as much as you can with your children don't you? And for them to carry on regardless, not have to keep thinking of your limits. One day I might actually accept my new limits and will probably be better off for it. Just not this week!
Hope everyone is ok today and that you're all nearly ready for Santa.
reviving I bloody hate that Doctors say 'it's sciatica' like its a condition. It's not! It's a symptom of something else. It means 'your nerve is being trapped/irritated/pressed on/touched/etc' and that is caused by something else! I am not a doctor, but a common reason for this is a prolapsed disc, or something else within the spine that is impingeing on your nerve. It's great that you have some meds, but you need an MRI! <shakes GP by the arms> I am sorry for being so angry, but it drives me mad, the very least he could do is give you some pregabalin/gabapentin/amitriptyline - these are nerve blocking painkillers and can do absolute wonders for nerve pain, unlike codiene, which ime does fuck all for nerve pain. <sigh> <breathe>. Sorry. I ranted. If you don't get any improvement over the coming two weeks, or, tbh by the end of this week, insist on an MRI. Nerve entrapment by disc problems can resolve itself without surgery so I don't mean to get you worried, it might be something that you recover from within a few weeks, as the disc goes back, but you need to know what is causing it so you can treat it. There is just no point treating the sciatica symptom without addressing the issue that is causing it, conservatively or not conservatively.
cowmop wow hope it's not too horrendous for you! school trips are hard enough as it is without the added trouble of pain in the mix.
Pain clinic appt - pissed off. I won't even go into it. You all know the outcome. Fuck all. Can't do anything until MRI result (which, btw is sitting on my neurosurgeon's desk while he has been away, and is waiting for him to dictate a letter to me, which won't be written until after the christmas holiday period as the secretary is away from when he returns to end of December. I am being referred to physio for some hydrotherapy. The physio lead I saw did say longer term if surgery option reaches a dead end I could look at having some kind of stimulation therapy like a spinal cord stimulator? Anyone heard of that? It's inserted into the spine or something. Anyway, that's some time in the distant future in the mean time, I shouldn't double dose naproxen, and I should consider coming off diazepam in the long term due to it's addictive properties. HA! I have taken a total of 12mg diazepam since September!!! Some of my clients are on 20mg-30mg per DAY (some of these are prescribed, some are not --some take even more than that) ! I don't think I have to worry about being addicted just yet...ok, so I went into it. BAsically without MRI and while neurosurgeon is involved they won't touch me. Apart from a swim in a heated pool.
And my pain has increased lots today in my legs. Lots. And Lots. And I feel sick and flu like (I forgot to mention that previously when I got this flu like symptom thing with pain, I sometimes threw up as the pain increased, hope not today).
Mostly. I am fed up. But, also feeling happy (can I be both? Is that even possible?) that I have mostly done the christmas present shopping
thank god for amazon I actually ventured into a shop today. Not a good idea as I spent so long wondering around I spent too much. But even stocking stuff is bought now. Just got three more presents to get then completely done apart from food shopping. DH's job that.
Least I can go to work tomorrow. YEY. Now going in all day so hours and hours of risk assessments and sitting down. Boo.
pavlov that sounds predictably shit. You'd think there would be a secretarial pool or someone who could cover for holidays to keep things on track. I've heard of the pump thing, but not read up on it much, definitely worth a google at least. I'm not sure what we are expected to do apart from rely on painkillers, the pharmacy assistant where I go keeps warning me off taking codeine as they "can be addictive" and she "knows someone who only takes them for the buzz". I want to say, that may be true, but it's been several years now so a)if I'm going to be an addict it's probably too late and b) how the chuff do you expect me to manage everyday life? and c) in combination with the other pills I take they barely take the edge off, let alone give me a flippin "buzz". I also take the minimum I can get away with as it sounds like you do.
Sorry your pains bad today, must be something in the air! At least you've got the majority of your shopping done, where would we be without the invention of Amazon, eh?
that's so true, even if I were an addict it would only be a problem if I were needing to stop taking them, and I can't see that happening any time soon
Amazon are also in my bad books. I bought some watches
on a whim for family members, meant to be fun. But they are aimed at teenagers but very clearly huge MAN watches. FFS. So, gone to return them and they want me to pay a total of £16 to send them back! Almost half the cost of the watches. There is no option to return them myself, as in no address etc as I can send them all back for less than a bloody fiver. Not that I should even have to as it's their marketing fault (or the company they are selling for but it's being fulfilled by amazon so their fault).
GRRR. And it's going to take an aaaage to get the refund so not before christmas, And I thought I had done so well
Jesus, what does it take for Left hand to speak to Right? So furious with the way we are all treated.
No GP appts.
GP offers nothing bar drugs.
Physio won't actually see you.
Surgeon offers MRI but not the result.
Pain clinic say, too many drugs.
They want MRI result.
Try warm water...
Meanwhile we suffer. Employers start by being sympathetic but this wears thin. They lose patience. We suffer....
Though it will be scant reassurance to you, I do now have people whom I trust and are helpful. It's taken a long time. I'm sensible enough to manage my medication. If you understand the function of the medication and how they help so can you. These so called experts have probably never had worse than a headache.
I've had Spinal Cord Stimulator mentioned, too. It seems to be the final offering from the medics box of tricks. I mentioned it to the Expert Witness I saw a few weeks back and he said that he had never seen one work successfully. I'm fairly certain I won't be accepting this offer. Sadly, pain management can only go so far. I'm starting to believe that the mindfulness approach is, alongside the drugs a better way to go. I, anyway just don't want any further surgery.
cowmop, good luck! Have fun. I know exactly why you volunteered; you want to be normal. Have a good day. I think this counts as a 'sod it' situation. You know it will hurt but you want to do it anyway. Hope you can have a totally lazy evening and quiet Thursday.x
Oh and I got cramp in my toe/foot/calf while driving today. In the dark. In the rain. That was NOT fun. Luckily I was able to pull over safely. But, wtf!
I think maybe i need to drink more water. apparently cramp can be a sign of dehydration. I drink too much coffee
it has water in it thats what i tell myself
matilda oh it's so fucking annoying isn't it. I am sorry for swearing but I'm having a sweary day and this is mild Funnily, the pain clinic guy said that the neurosurgeon would have had my MRI uploaded to his email/file/whatever within an hour of me having it done. He also said meurosurgeon's generally disregard the radiographer's reports, ignore, don't read, overrule, disagree, whatever, and he had probably already looked at it the day I had it done, or the day after at least, and made his decisions then! So he didn't need to be waiting the two weeks for the report to be sent from one end of the hospital to the other.
He was full of sympathy, lots of sympathetic noses, crumpled brow as I sobbed how shit it all was, and how fucking slow it all was. Mindfulness. That was the sum of his input. Come to terms with it. Learn to accept a level of pain, and not expect pain free. no shit sherlock! I hate sympathy btw. It makes me want to shout 'stop being nice and fix it!'
Sorry to hear physio is being delayed until all the admin cock ups resolve Pavlov.
Ilove sprouts, I'm sure you could do with a tardis. All this legalese PC stuff of not apologising for serious injury ( and not telling staff why people are missing - ie ill) is frankly inhuman! I am so sorry you have had such a major injury, but hope you recover better than could be expected - whatever that is. Its bad enough coping with life changing illness but when another party is responsible, the emotions and anger must be so much harder.
I wanted to ask about hot water bottles. I use one on my back/ neck, ie the source of the pain, but yesterday driving, the pain in my leg got particularly irritating (as it does sitting in a car) so as I was stuck in slow traffic I put my warm hand on the worst affected thigh and it seemed to help. Therefore I wondered if (and if so how?) it was worth using heat on my legs too. Mind you I only have so many hotties!!
I have a couple of frantic days left to get my pre-Christmas preparations finished! Better get on with it then (only working half day today).
Hope today is a better day.
Is a coincidence that lots of nn on this thread are cats/kittens?
I don't know of prolonged use of heat on muscular pain but remember one of the nicest and comfiest drives I had when we went for a weekend trip and our car had heated seats.
I wonder if it's possible to buy heating pads for driver's seat. I guess they will be powered off the cigaret lighter.
In Poland many people swear by those - I think I am going to get one for myself.
Funny you should say that anti as I have been using my microwave heat bag this morning and it makes it a lot more easy to sit down. Without it I was jumping up every 5 minutes.
Well I contacted the physio and surprisingly he rang me back about 2 hrs later. He is going to see me next week. I think a week later will actually be better although I am keen to get started because the 5 minute journey to the dr was agony and the physio is further away. Maybe I will have improved a bit by then.
Thanks all for being annoyed at the not very quick help. I'm sure if I were rich and could afford private physio and quicker access to things like scans this would be better, but it is the NHS for you! My mum is a mental nurse and the things she tells me are terrible. Actually I did talk to her about addictive drugs like codeine and she says you are ok as long as you don't start relying on it to help your mental state, these sort of drugs may give physical withdrawal effects when you stop taking them but that can be overcome by weaning you off them gradually. So if you feel you might be using the drugs to deal with mental problems that is when to worry about addiction.
revivingshower - perhaps ask Santa for an electric blanket
Good idea! Actually has anybody tried one of these blankets, or is a localised pad better? Obviously the microwave bag gets cold quicker and you can't really reheat it in the night.
pavlov meant to say that I am cross for you too and shame your consultant doesn't have your work ethic! Hope its not too bad today.
cowmop hope trip goes ok today. Here's a for when you get back
matilda thanks for all your help and positive thinking
magso I think a hot pad could work on leg cramps as well as back. Yes a heated seat would be interesting to try in this regard.
I am in love with my water bottle, had not considered trying it for leg pain, I am going to try it magso and will report back. I can't see it will make things worse, but definitely may help! I actually find myself spending my day wistfully thinking about the evening when I can lay against my heat pad, with legs up on that new pillow from Lidl! Sad that I am.
reviving I am sure he works hard but he definitely has time off too! I waited just shy of 18 weeks to see him because he was off for 6 weeks! But, I do know that doctors go and do training etc and spend time in far flung countries so perhaps he was being selfless with his time. Ha. the guy at the pain clinic yesterday said he wonders if I got my surgery so quickly after seeing the neurosurgeon because i waited until 2 days before NHS waiting list deadline to see him, he said management probably gave him a blocking (I guess that would actually be his secretary. Re medication, my own GP said the same when I didn't want tramadol, and at first refused diazepam. I said I had seen plenty of clients who were addicted through abuse and he said there was a distinct difference to using opiates and diazepam to get a high and using it for pain relief, as it works for a reason when sick/in pain. Although, tramadol was horrible to come off, physically and mentally. I shan't take that again.
Today. I feel calmer. I am actually in quite a lot of pain. But, you know what, today my mindset feels a little better. I actually walked 'normally'. I said to myself, ok, so it's gonna hurt but so what, it hurts anyway, why bother trying to stop it, just ride on through it. I mean that lasted for 5 mins but for those 5 mins I felt good! suffering for that now but I have decided I am going to laugh a lot more, dance a lot more, and just suck up the pain. I know that won't last more than a day or so but for now. I'm gonna stop moaning that I hurt all the time. If this is as good as it gets, well, it's not going to kill me, I am doing going to die from a bad back so I can't live until 80 like this, got to get through it. (going on a bear hunt springs to mind '...mud, thick oozy mud...' ) and no not taken lots of drugs either
I noticed there are some cats/kittens here. Not sure why?!
antimatter i love those! do they actually massage your back?
they seem to massage gently as you sit on them wearing your clothes and when we drive we wriggle a bit - I'll report when I get one
Well we have heated seats in our car so I tried it and it possibly helped a little. I use a wedge cushion and a back cushion so it takes a while for the heat to come through that lot! Still good thinking. I have a very long journey in a couple of days and I think having a warm seat ( the heat will get through eventually) should help. Less of a worry now anyway! Thanks
pavlov sounds like you have a good attitude, if you try to always move with good posture it is supposed to be good to keep moving. So this may be a good idea if you can do it. Anyway you have to have a life, but be careful.
I have tried the naproxen today, I was a bit wary of it as someone I know said it gave them stomach problems but the first pill I took I seemed fine and my back did seem a but looser but I had another dose later and I felt bad not stomach ache but just rough. I will try it again just in case this was a coincidence though.
I am moving my heat pad around my back and leg at the moment.
magso don't forget those stick on heat pads for journeys too.
we've been having H&S assesment at work and one lesson I took is that most chairs are too deep for me
I tend to perch on them anyway and try to have (at work) plastic step to lift my feet up a bit as I am
Anti matter I am short too and find almost all seating too deep and not the right shape generally. At home I use back cushions or supports, in the car (where the lumber support is too high, pushing me into a painful slump) I use a Putnum compact back support. This pushes you further away from the safety of the seat cradle and neck restraint so I guess it increases vulnerability in a crash situation. I find many full length back supports are wrong for me because I am shorter than average. Because I have shortish legs I have always sat on my feet (kneeling) often on one foot only which I do a lot at work (its easier with a bad back as I am up and down a lot). I don't feel comfortable on most settees (except sat along the wrong way using the arm as a backrest) so tend to curl up which is not very good for my back - I think its added to my lack of symmetry. I am trying to force myself to curl the other way (and uncross my legs)!
Reviving, thanks for the reminder, I have added 'buy heat patches' to my today do list. We leave after work tomorrow to start the first leg of our journey.
Cowmop I hope you survive the school trip!
Matilda I hope you are still benefitting from your nice spa week end. Can you reproduce any of the treatments you found helpful. I might have access to a mini spa bath over Christmas but it might be too cold (outdoors).
Pavlov, good luck with the walking straight. Would using walking poles help?
Coop pharmacies have the curaheat back and shoulder patches on special offer! And yes I got some for my journey.
i had a curaheat pad on today! i swear it got me round late night shopping this evening! Although only went in two shops as I have pretty much got everything
woohoo I took the children to santas grotto and got ripped off, as DH has had a tooth pulled and didn't fancy going in the giant bauble for photos. Kids went on some rides, including a free one worth a fiver as the very old with no teeth bloke tried chatting me up. I smiled politely for 5 mins for that freebie , and now I am bushed. Thank god for those heat pads, our local is a coop will see if they are there tomorrow.
reviving that attitude of mine is not usual! I sort of seesaw between 'fuck this shit' and 'oh it's all so fucking shit!' Today, I am feeling very christmassy and trying to ignore the pain in my legs, it's just pain right? Pain is a mind thing right? It must be, as codeine doesn't stop pain, it stops how we process it. So therefore, we must be able to do that ourselves right? <convinces myself there is no pain>
antimatter you should ask your employers to look into 'assistive solutions' to provide a proper chair for you. They can access support for funding via various groups or through internal means which they can claim money back for, for disability needs, and it should take into account leg length etc. I have short legs, am 5'33" also, and the depth of chair means my legs don't hang right over normal chairs, so the chair I have takes that into account and can be adjusted in all sorts of ways seat can be moved forward/back for longer or shorter legs, same with base of back, can be moved up and down to fit the lumbar area to where your own is. It also has a little pump to pump up the lumbar area, like a blood pressure thing! (that's actually shit and I have a roll at my lumbar region as well). neck rest is really important too, to ensure you sit in the right position. I initially got a generic 'back support chair' with my first H&S assessment, then they got a private independent company to come and assess me on advice of OH, and they recommended a completely different one, cost £800! waste of time really, as I actually prefer standing up so could do with one of those stools that you sit on at height that get you in the correct position
In a lot of pain this evening. Have had all drugs, tried heat pad so sick of this now. Shouting match with dd earlier as was so grumpy due to pain. At least last day of school tomorrow so that will cheer her up. Owww me back, moan etc
reviving how old is DD? are you able to sleep? sometimes, the only thing I can do feel better is to sleep
I have two more presents to buy. But. One of them is impossible! DS wants a robot! I can't find one anywhere! Any ideas?
My dd is 9 she is ok now she sort of understands I was cross as feeling bad. I don't feel like sleep now but maybe if I can find a comfortable position.
Well done for all pressies. There was a robot dog advertised at Argos. What we do for the kids eh? Rushing round looking for a robot!
that dog is awesome, but I am not spending £59 on it! They do a robosapien version, same price, but also a mini one for £10. I shall get him that one! He was quite specific about what he wants though 'a grey robot that winds up' while doing the wind up motion at the back (he is just 4). Shame he didn't tell before I got most of his presents a while ago I thought he would forget, but as the last week or so has gone on, he has become quite obsessed by it! But, least I have found something that I think will satisfy him.
But remembered one more thing to buy. A pair of binoculars for DD, and a particular book for MIL. All done as click and collect
It's hard for the children isn't it? this whole not being able to move stuff. I have so many days of turmoil about the impact on the children. Mostly I dont want to be an unhappy mum as they are my world and make me very happy. DD is 7. She is fabulous and very empathic, she looks after me sometimes and that makes me sad. DS is also fab, forgets I have a bad back, jumps on me or needs a carry and that has been hard as this has been a daily problem since he was two (the odd week or two every 4 months since he was 10mths, but had big gaps of being fine before it finally went properly) and he has been so young to learn that he can't jump on mummy. And some days he can sit on my lap for cuddles, and sometimes he cant touch me or I get cross. mixed messages and a hard lesson for them to learn so young. But I am telling them that I might not be able to do lots of active things, but we can still have huge amounts of fun and sometimes even I can do active things but then need to rest afterward, but that's ok.
We have fairly good chairs with regulation but I still wriggle on them.
I can't believe it there isn't a scanning system/machine which would take into account posture, habits and came up with appropriate chair for us.
Assesment by H&S was rather useless.
Some colleagues in US have standing desks and chair like this
they swear by them
access to work through the job centre for workstation assessments. they are amazing.my assessment was 2011 though, I hope they haven't been cut. Recommendations to employers should be followed although I am having some ahem difficulties at present. If a large company they are unlikey to qualify for having equipment paid for.The assessment is yours and can be redone if you move jobs etc.
I have the adapt 600 chair built to my measurements.I love it.
Thankfully I did manage to sleep, even though I always wake in the night I do feel much better in the mornings. Dd was happy anyway, off to the panto with school so that is good.
pavlov glad you found a robot! It is so sad when you can't carry them, I actually used to carry dd too much when she was a bit old and too heavy for me, so this probably didn't do my back any good. I used a baby sling a lot with her and she always wanted a carry even when she was about 6!
Just going back to the earlier discussion, I am short too and find chairs normally don't fit. At work I am usually standing though, but the problem is there is also a lot of bending and lifting. But at home I am always curled up on the chair or sofa and this is probably in a bad position. I have actually been wondering about trying to get a chair or something for my house. I can't really afford one, what do you all do at home?
Oh a holy Moly, the dreaded PIP forms have arrived. Took a week to come so I actually have three weeks to complete. I'm an avoider so bound to ignore for some time. Oh god, more forms, more stress!
Had a silly busy week. Was actually at the theatre last night. Luckily the ceiling stayed intact. Getting into London then sitting and getting home was just a killer. It makes me feel so depressed to find these supposedly fun outings so overwhelmingly difficult. My two SIL were lovely but really weren't getting it (prob my fault for not actually saying much). However I don't think I actually sat still for more than 30 seconds.
Now, quick advice please from anyone at all....
Tonight is the Christmas meal for all my former colleagues. My closest friend there invited me. I said yes, paid and thought it would be nice to see everyone. Now many of them I haven't seen or heard from in Nearly
two years. Even though I was on great terms with them all.
So, even though it might be nice, I'll spend all evening repeating myself( don't want to keep discussing it even once). And getting outrage support about the fact I was fired. (Again, don't want to think or talk about it).
My back and leg are killing me, I will be either standing or sitting all evening, both bad.
So...do I go and hope for the best, it might be lovely. Or cop out on valid reasons both physical and emotional?
Please advise me.
matilda If you had not paid for it I would say don't go save the money for something like at a take away at home. But, seeing as you have paid for it. Could you go, say hi and if it gets tiresome talking about your back, leaving your job etc, you could leave early? Especially if you start by saying you might not be able to stay the whole time due to pain levels? Can you drink wine? If so, I would recommend drinking lots of it.
I really want a glass of wine. BUt got to drive shortly running round like a loon so not going to happen for a good few hours
matilda sorry your theatre trip was not so fun as you hoped. I agree with Pavlov to try and go to the meal as you paid and have some if you are allowed. But leave early if nyou need to, also only go if you can definitely leave when you need to it would be bad if you got stuck there as the person driving you was not ready to leave. Does everyone know you were fired? If not and you don't want to talk about that you could say something like "obviously I couldn't continue to work with my health as it is" that would avoid the outraged stuff if you want to. Also if you dont want to talk about your health problems say I prefer not to dwell on my health on such a happy night but how have you been getting on etc?
Bless you, wise ladies. My mil has just said the same.
Thanks for the wine recommendation. I will take your advice.
Will report back to you all.xx
Matilda, good luck I hope it turns out to be a good night
Hope it goes well and you enjoy
matilda thanks for your advice earlier about naproxen on my other thread. Nearly forgot to ask if the meal went ok?
Hope you all have a good weekend. Its my birthday tomorrow so I will be hoping for my back to be ok and hopefully having a takeaway with the family x
Ho Ho Ho all!
reviving oh I hope you are feeling well enough to enjoy your birthday, and christmas! last two christmases I managed by propping myself up at the kitchen bar with wine that I asked to be constantly filled. Well not so true last year as I was driving, and on so many painkillers I was not able to drink more than a glass of fizz, but the year before, when this all started, alcohol helped me through! Last year was a successful christmas thanks to DH and some lovely friends, who we spent the day with - they came around on xmas eve (30 mins drive from countryside) to collect presents we needed taking up, food we were bringing, chair we were lending etc so we didn't need to do a thing the following morning apart from get there. My best friend refused to let me do a thing. But, mind you, I could barely move my leg then so couldn't help even if I wanted to.
Talking of take-away - I had a horrible evening following a Chinese lunch. I threw up properly, it was horrendous, and throwing up with a bad back is Never Good feel better today, headache, sore muscles, and thank god it's not a stomach bug!!
matilda hope your night out was good, hope everyone else is doing ok? mags you were going on a road trip weren't you?
Yes, I went. It was fine. Saw several people I was pleased to catch up with. A few former colleagues didn't even bother to come to say hello...so I went to their table and said hi. It was knackering and I left at 10. Sitting in my cab I definitely felt a sense of closure on the whole thing. It felt kind of peaceful (could have been wine and drug combo). Have no need to revisit now.
Yesterday was a bit vile but walked dog with friends as per usual. Rested, dosed then headed into town with Best Friend and had a surprisingly successful trip. I was very wobbly, though. My leg weakness gets much much worse when I'm tired and sore.
So, two nights out on the trot! That's the first time in nearly two years. And possibly the last!
Today we have Big Family Lunch at local smart hotel for husband's side. All lovely but ummm, could well do without it. Interestingly, I've lost weight despite so many meals etc. I think bad pain is calorie consuming??
More or less done for the Big Day. For anyone disorganised like me here's my wrapping tips: use ironing board if a large one instead of table, it's a better height. Use wrist tape dispenser and do small amounts. I still have quite a bit to do.
pavlov, yuk! Were any of your companions ill? Report to Food Police. Probably not a clean kitchen
with maggots in the fridge. Hope you feel better.
Have a lovely day everyone. reviving, hope you have a lovely time and pace, pace, pace.
Off to glam up. Weird at this time....
Hello all, is it in the least surprising that my pain has ramped itself up for a festive flare up? Can't think what's brought that on. I did even cancel dinner with friends last night but clearly I've done far too much.
Still, I have two monster pavlovas in the oven and ham bubbling away in cider. The rest is up to DH! Wrapping done, I think. Just the fiasco of the Secret Santa to clear up. Carefully laid plans wrecked by my boys buying for the wrong people....
Later...oh dear, just the one pavlova then.a bit stuck together with the cream. Why do I ever imagine home made must be superior to shop bought. Clearly very wrong. Tramadol not working so crisis point in the Matilda household. DH has reacted by...going to the dry cleaners. Possibly the only thing in the world not on my list.
Merry Christmas !!!!
matilda oh merry christmas! Can you have wine? it's not too early as its xmas eve! I am sorry you are in so much pain, I think the stress of christmas and running about trying to get things done means some increase is almost inevitable, certainly here it is, but thankfully no full relapse to where I have been for two christmas's in a row.
If it helps at all, our main radiator has been pulled off the wall in the hallway thanks to DDs gymnastic antics, and the builder was going to come and fix it today, but i text him the address to the wrong mobile number, and then today when I saw that, i text him again and he has another job as didn't think I wanted him to come any more. We are going away, have a radiator fixed to the wall with gaffer tape, fingers crossed there is no leak as we are going away on Friday and so no time to get it fixed before new year now. Marvellous. Electrical tape is very festive you know! DH is working this afternoon, so we are going to a friend's for mince pies etc and he will meet us there. Scuppered my plans a bit as I had wanted a chilled-out afternoon with the children, but ho-hum.
So sorry you are feeling bad matilda does a warm bath help? If not a lie down with hotwater bottle and possible or chocs. Let the others sort out things. Don't get stressed about anything. It is all so unfair and must be very frustrating for you. This year dh is doing Xmas dinner and it is all Auntie Bessie's and bought in ready stuff, which I don't quite approve of but it is nice to have help. But I am sure you want to do more like me, but try not to let it get to you so you can enjoy some of the day.
I am feeling a lot better and in less pain. I even managed a shower yesterday, hooray. Saw physio and he has given me exercises. Poor dd is not feeling well now, she has a bit of an on going problem with constipation and since I got ill her diet has got worse and not eating enough fibre. She has got quite bad now and am feeling a bit worried about her and slightly guilty, the only good thing is I have read loads about it recently and found a better tasting medication for her than movicol, which she refuses even mixed in a drink of squash. She just won't touch it. Hopefully a mixture of lactulose to soften and chocolate exlax to get bowels moving will work instead. I am being careful with her doses though.
Hi All, I hope everyone had a not too stressful, painish free Christmas.
The school panto trip was really good and not as bad pain wise as it could have been as the children had a lecture/talk in the morning, then lunch followed by an hour or so wandering around the museum before a short walk to the panto. Which meant there wasn't too much walking, sitting or standing, iykwim? We got back at 7.20 so it was a full day, but I'm really glad I went. The next day was the school disco and I have to admit I was feeling it by the time I was giving the party bags out at the end, to the point of thinking about just lying down where I was in the doorway! What a way to get a reputation hey?
We've had a lovely Chrimbo with loads of help from my Mum and DH bought me an electric piano as I am hobbyless now I'm broken. I can't wait to get going properly on it.
Just a quick one so I don't lose you all! Hope you had a great christmas, as well as it can be with a bad back!
cowmop oh what I nice replacement hobby! I am also hobbyless due to be being broken, but can't play instruments. I have moaned plenty about my lack of hobbies since my back problem as I am an avid water fan - swimming in the sea, kayaking, bodyboarding, trying to surf, some sailing...now, nada! So I have a camera, a nice one, but don't really know what to do with it. I got it to stop me walking behind on my own on walks feeling left behind; it's fine to be lagging when you are taking pictures. But, I enjoy it, it's not the same and I never get to finish my work!
I am in London! I did too much yesterday, back 'went' last night and I had to be helped to bed but, hot water bottle (I new gel bottle from the 'cats'!) and some anti-inflammatories and a good sleep, and I am feeling better. less today I think!
Any ideas of what to do near St Pancras with a 4yr old? The eldest is doing something that I can't say as she is sat net to me reading ove rmy shoulder!
And. ARGH! everyone is going to Paris on Monday as we are near the station, it's like 2 hours away and not very much money to get there for the day - they are all from USA so have their passports - we didn't bring ours seeing as we are coming from westcountry to london! Gutted!
Near st Pancras I can't think of much. There is platform 9 3/4 at Kings cross and a very expensive little Harry Potter shop next to platform 10. A bus ride to Regents Park and the walk along the canal next to London zoo.
I struggled a bit with our long trip, then my 'cold' got worse so I have done very little since. Chest infection and dodgy back do not mix well!
Best wishes for better behaved backs for the new year.
Hello all, Pavlov, shame...I would have met you had I known. SW London here. I'm so with you on the lack of hobbies. Swimming is frankly a chore now though I do enjoy it when there. It's just not the same as my old swim til you drop style. Loved open water, too. Now I'm not even up to aqurobics with the old ladies. Musical instrument sounds nice but physically no good. Studying a problem as my concentration poor and can't sit.nada nada, stop moaning!
I've had a couple of days in Devon, one good one awful. Traveled back yesterday so today was never going to be good.
Pleased to report, though, for all those concerned that I most certainly can drink wine. I have tested it thoroughly and can't remember the results of my experiments!
Keep going my friends. I have the joy that is the PIP form to complete. Trouble is, I feel properly disabled just not the way they seem to be asking. I now have four separate claims underway including this! ESA and my ill health retirement. Full time job I most definitely didn't apply for
Hi everyone and sorry your Christmases sound not as good as you would have liked, but hope you enjoyed the good bits. I am much improved, pain is really much better and I am just uncomfortable, its hard to find a good way to sit and i am getting a lot of pins and needles when i sit, but I can lie down and stand ok now. I am still very weak and struggled on a couple of short trips I went on, but at least I could go and I think it is mainly a case of getting my strength back, hopefully. The physio found the reflex in my ankle was not working properly due to the trapped nerve but I was able to move all my muscles strongly enough he wasn't worried about it. He has given me some exercises to stretch my leg and try to straighten up as I am leaning to my bad side all the time, but I am a lot straighter than I was when the pain was bad. I can still feel that lump where the pain is in my back not sure exactly what that is. I am still on holiday for the next week and hoping I will be able to go back to work, but not sure if I will be strong enough by then. I hope I will.
Just a quick post in Camden town with sleeping boy on lap. Matilda I might even need a break again! There is 15 of us so coffee could still be good this week if you want to? I am normally in devon !!! Don't forget ask me questions bout pip form, pm if you want as questions are deliberately obscure
Reviving so pleased you are feeling better but keep an eye on pins and needles. Good you have physio on it but don't know why no MRI if you have reduced reflex. That's usually enough for further investigation. Certainly was for me.
pavlov, I have sent you a pm. Hope you're enjoying London despite the foul weather.
reviving, hurrah!I'm so glad you are improving. You are like a text book, well done. Don't try to do too much, though. A relapse would be dreadful. You could always ask your employer for a phased return if you aren't up to full time. You can do that even if you are part time. Did your physio give you core exercises, too? A strong core is supposed to protect your back although it didn't protect mine.
magso, hope you're feeling better. Coughs are horrid. I had whooping cough when my back first went. Grim days indeed.
cowmop you are on a roll! Enjoy the good days.
DH had to take my knickers off last night and not in a good way! I'm doped up and hoping it eases off a bit before my sister and bil turn up for tea this afternoon and preferably before I need to take my next breath.
reviving, I'm really glad to here you're getting better, but take it easy.
magso, I hope you're cough is easing up, it's a real git coughing with a bad back.
Matilda, I hope your pain has settled down after the journey and you manage to wade through the paperwork.
pavlov I hope you're having a good time despite having to remain in rainy Britain and that you're pain eased off enough to sight see.
On the piano front, I'm not particularly musical and only had a brief stint playing in the past when Dh got me an upright as a 21st birthday present. I had lessons for 6 months but was soon fairly huge with dd1 and haven't really touched it since. So a good ten years and the upright went when we last moved house. I've found I can still remember the basic fingering and have been on t'web learning to read music again. I have to say I'm enjoying it and it's lovely doing something for me, even if it is in 10 minute sittings in between pain/family life/cooking/cleaning!
I hope everyone has a great New Year.
Oh dear cowmop hope you feel better soon and are able to enjoy your visit. look after yourself. Piano or keyboards are a great choice to learn as you don't have to be brilliant to provide a nice accompaniment to singing or another instrument, so will be great for the kids as they grow up if they are learning another instrument, or if any of you like to sing or for dancing.
I am still improving and have been walking about quite a bit and been in to town but am not sure about whether i can get back to work. I am part time but it is in a kitchen and quite physical. I need to walk or drive in every day, then be on my feet for 3 hrs plus all the lifting and bending needed. Of course you can't slow down either. I am not sure if they can offer me a phased return as i am a lone worker and if i am off they would get a relief cook, but normally there is no other cook there. Dh thinks I may need longer off but it makes me feel guilty, but I really don't want a relapse, next time I may take even longer to recover.
Hope the rest of your holidays go well everyone x
Happy new Year to you all. Today I did something for the first time ever...I met up with a 'virtual' friend and that person was...our very own pavlov!
What a charming and lovely person she is. I can confirm she has neither whiskers nor tail. It was so fantastic to meet in RL with someone who truly 'gets it'. And she very kindly went through a whole lot of tedious PIP forms with me to try to
cadge claim some benefit to which I am absolutely entitled. So thankyou!
Hope everyone else is coping with life. It's a funny time of year, still put of routine, yet Christmas well and truly over. For those suffering here's a hug and a handhold(( )).
reviving, beat that temptation to overdo it. Slow and steady
sometimes wins this race.
Just a quick line to mark my place before I go out for a sneaky glass of wine... matilda also does not have a tail, does not purr and does not shed fur.... Lovely to meet you! Had a lovely sane chat with an adult that was not my crazy family, was not a child! we drank coffee, chilled for a couple of hours before the craziness started all over again. Thank you for the little bit of sanity in the midst of an enormously hectic and busy week! Devon next!
Aw that's lovely glad you two met up, and glad Pav could help you with the forms Matilda. Great timing, she did say she liked doing them I think? Hope your trips home go well too.
I am doing ok and still slowly improving. The physio advised at least another week off work so I will not be rushing back there and will keep.exercising away.
Boo. On way home following day in London looking T Big Ben etc at end of our weeklong trip. It's taking ages to leave and dh has already stopped for coffee at reading. Argh! and it's probably not going to end well re back as I'm already uncomfortable and got 3 hours to go yet! Stretched legs but really want my nice bed and million pillows and wedge pillow. After a long hot bath.
Bumping for the new back pain sufferers.
Come and join us here for support. Have been on the Tramadol today as well as all my regular meds so not as good at getting it right as I would like...
Happy New Year everyone.
I had lovely 10 days off - away from cooking and even though bers weren't most comfortable I feel rested.
Bumping thread for new back problem peeps.
I am feeling a lot better and have been able to reduce my painkillers a lot. Still strengthening my leg as it feels weak. I have physio again Friday. Hoping to get back to work next week as i always seem to say! Hopefully this time i will, but with no problems. I reeeeeealy don't want to hurt it again!!!
reviving, so happy you're on the mend! I think you said you work in kitchens? Could you meet with your employer and look at any workplace adjustments that might keep you injury free? Not sure what but eg perch stool, keeping heavy items on one level, getting food supplies left on work tops? Probably all silly suggestions but you get my drift.
Hope you will keep up those pesky exercises, too. Speaking of which, get up and get them done, matilda!
Thanks Matilda I am going to ask. One thing I have thought of is getting the dishwasher raised. I am not sure if it can be done, but it would save a lot of bending and twisting, as I have to load and unload it about 6-8 times (its one of those fast industrial dishwashers but it is the same height and size as a normal dishwasher).
Oops that was me I have N.C
That sounds do-able. Might be worth getting expert advice, I bet there are lots of minor changes that could all make a difference. Problem I have is normalising things that aren't normal at all IYSWIM.
I am seriously considering a change of jobs depending on if something suitable comes along. I can see working in a kitchen may be at least excerbating my back problems if not the main.cause, as there is so much need to lift, bend etc and so many chances to do it wrongly and hurt myself. but i will just have to see what is available job wise in my area.
Mmmm, I've thought about jobs that might work for me...can't sit, stand or walk much. Can't think straight due to drugs. Functions best lying down with knees bent upwards.
It's not looking good, is it?
Matilda it would be very hard for you to work unless you could maybe do something from home that did not have a set deadline, so you could stop if you needed to.
It is difficult I do like to work, hate being stuck home all day, but of course when I am at work can't wait for the holidays.
Glad you're so much better live, sounds like things are heading in the right direction.
Matilda, you need a job lying down with your knees raised whilst being under the influence of powerful drugs you say? Hmmm....no, nothing comes to mind
Hi everyone : ) I'm new here & have only had chance so far to read the first and last few pages of this thread but think I've found the right place for me!
Does anyone know how Littlemisswise is getting on? I have permanent damage / degeneration to my pelvis from severe spd in pregnancy with my dd 3 years ago, so would be nice to chat to others in similar situations : )
I have had back problems since I was 11 (now 32), not helped by falling off horses many a time as a kid and damaging my coccyx. I then also developed M.E which I still live with now. Apparently with back problem history I was a prime candidate for bad spd in pregnancy, but have only found this out since ; ) Not that it would have changed anything, my beautiful girl is my life : )
But life is hard with the health issues & the pain trying to lead as normal life as poss with a crazy toddler! I do try to remain positive, finding that very hard right now though as me, dh and dd all have a fluey chesty virus for the second time since we only just got over it a few weeks ago! That and the sleep deprivation & cabin fever that goes with it, on top of my usual pain and exhaustion are getting me down.
So it's nice to find this thread and feel like I'm not alone, I'm Bea by the way : ) xx
Hi Bea, sorry to hear about your problems! it sounds very hard. Have you had good medical care? I know some on here have really benefitted from injections I similar situations. Running around after a toddler sounds mighty hard! Hope you have lots of good-drugs-support.
Just marking my place.
And saying OOOOOOUCH.
In bed, can't move. had a tough week but managed ok with little bit of increased back pain following long drive home from london and a couple of days of horrible pain. monday/tues off work, back wed/thurs.
Last night I had flu like symptoms, threw up, felt unwell. Today, increased leg pain and numb toes. Went to the loo before seeing a client, back promptly went as I tried to get off the loo. I was stuck for 5 mins before I could move. Now, that could have been Very Undignified.Although I do have a pair of cool Wonderwoman pants on so it would have given colleagues something to natter about I guess I pretended all was well for another 1.5 hours before hobbling home and now I am in HUGE amounts of pain, back has seized up, legs are heavy and lots of pain. I didn't connect the sickness last night with pain today until it went this afternoon. I had just got through supervision with my boss saying leg pain had increased but back was bearable, and I was just going to get the hell on with it, not ready to accept my fate. literally, 10 minutes before I went to the loo.
And, my colleague with a bad back, she is back today and she really doesn't look like she should be back yet, and so I really didn't want to make a fuss. So I didn't. I just smiled and pretended all was fine.
Welcome bea I will post more later. matilda sorry not PMed you, meant to but been hectic. I suspect I am going to have a lot of time to respond to posts here and elsewhere this weekend as I can't move... reviving glad you are moving better, be very careful about returning to work given the nature of your job.
Hope everyone who has posted on this thread and has not come back for a little while - hope you are lurking and doing ok pain wise. Thinking of you all.
pavlov, so sorry you stress in increased pain again.Did you ever get another with surgeon /mri?
Message withdrawn at poster's request.
I knew it was going to go though, as this week has been harder than it has been for ages. Little signs. Just not recovering from a minor hiccup like I should have, but even then, nothing horrendous.
This was horrendous. I know it. You know don't you, when it's actually fucked. This is actually fucked.
denial I have asked for that post to be removed as I mentioned my actual name in it. DOH!
So, I shall retype it as it will be removed. And I shall make it shorter, as I waffle too long as it is!
neuro thinks it has prolapsed again, possibly. Or, that it could be nerve damage but thinks that is less likely. He also thinks maybe he will see the vertebrae moving more but not so sure about that one. He has said if re-prolapse he will recommend fusion. If not, he can't do any more surgically. MRI been done, waiting for long slow results to get back to me. Pain clinic wont do much until surgical route has been completed, apart from meds review and hydrotherapy, At Some Point in the future.
I was doing relatively well, although I had a hiccup at the weekend coming back from london. I guess I never really recovered fully from it.
Anyway. It fucking sucks.
Oh no pavlov that is awful, that it has got so bad again. Hope the drugs are helping a bit. And hope you made it to kitchen and back for food. Interesting that you had those flu like symptoms again, you mentioned this before I wonder what causes it? Well it was bad but at least you weren't stuck on the loo!
Btw I have name changed from revivingshower, I did it so I could ask a q then came on this thread right away and outed myself lol.
pavlov so sorry you're in so much pain again, it is truly shit. I think it's even worse when you've had a good spell as you start thinking "hey, maybe it will go" (well I do, in total denial!) Keep taking shit loads of pain killers, and I hope you managed to get some grub!
Pavlov's bad relapse has worried me as I have been getting much better, but today have been a bit worse. Is there anything I should do to try to avoid getting any worse. I will take it easy and rest. It is so frustrating want to start doing more! Can't help feeling I am being lazy.
Can I join? Have just (today) been diagnosed with degenerative disc/vertebrae disorder, following on from surgery in 2011 for an L5/S1 prolapse. Luckily it's currently isolated to my L5 and S1 vertebrae (on the MRI, the rest of my spine looks fine).
Some days it's just a niggling backache, other days it's quite disabling. I'm ok if I take Voltarol and paracetamol/codeine (weaker stuff doesn't touch it). And the consultant reckons I should just get on with life, as nothing will make it worse!
But I've had a wobble tonight with the realisation that I'm going to be in pain for the rest of my life...very self-pitying, I know! So please can you all kick my arse and tell me to count my blessings?
<waves at Pavlov>
Hi fishandjam sorry to hear that news, but you will get good advice from the posters here. Its hard knowing it is a long term problem, but at least you can still do a lot esp when you are well. But feel free to moan as I do even though I am not as bad as most of the posters on this thread
Oh MNHQ are very kind! They just changed the name outing me instead of having god delete the whole post! It does mean I duplicated so, sorry bout that. Shall I blame the drugs?! Thank you MNHQ!
fishandjam <waves> you found us! So sorry for the diagnosis, it sucks knowing it's going to be here forever. I am slowly realising then denying that this is going to be a problem forever, sometimes I am so like fuck that shit and determined it won't get the better of me, and simply refuse to let it stop me living my life, and other days refuse to accept it's never going away, following by realising that good days, bad days, it is nevercg no away and I get very down.
I love diazepam! It has seriously made the difference between this being horrific, and only a bit shit. I am walking stiffly and like a robot, but I am moving a bit. Have leg pain, but as bad as it thought it would be. A gentle day today.
reviving I do that all the time with name changes. Forget to change back! This time I gave my real name you need to take it all so easy. If you are having a backwards step, slow down. Use some heat, take your painkillers, maybe go for a gentle walk but nothing more than that.
cowmop I had jam sarnies, quickly made DH got me some left over risotto later but by that time I was full!
and high as a kite
Oh dear, tales of woe as soon as I turn my back! Do hope you are all feeling a bit better and enjoying your
drugs weekend. It's so bloody frustrating.. Just a hint of normality and it all kicks off.
I am on question no 10 of the dreaded PIP form. That's page 23 of 40. Have been granted an extension on getting it back as doing it within their timeframe was impossible. I'm trying to do one question a day and have typed the whole lot up. Unfortunately that means sitting. When I'm doing it for 15-20 minutes I get absorbed but am in agony when I stand up. Meh.
Also was randomly sent a new ESA form with no explanation. For those who are not following my life story with bated breath, I have been waiting for an ATOS medical assessment since last March. So I call up to ask about the new form (it's a whole book) and say I've been waiting for a medical and or decision and the girl says after a long pause 'so don't you want to apply then?' How are we meant to remain calm and polite??!! So I call ATOS and am told I will hear 'soon'. No further information can be given.
It's a damn good job I haven't actually starved to death in the meantime.
Off for drugs now. Went to see the Fascinating Aida last night. Bloody hilarious. Here's their most famous song but there were loads, all fantastic.
Welcome to newcomers. Sorry you had to join our club but their is, I think, some comfort in not being alone.
Oh, and big slaps on the wrist for me...my physio says I've burned my back with my patches. Must apply to vest * not* skin.
matilda those forms are so bad, I suspect there are a LOT of people who are entitled to the benefits that just simply don't apply because a) they are encouraged to think they won't qualify by the wording of the questions (despite struggling with day to day living) and b) because it takes a lot of time, willpower, english literacy and if you have a disability that means you need to apply, likely pain, to fill it in. Sort of part of the test almost. I cannot imagine how hard it must be if someone is managing an illness that affects their emotional wellbeing. Not everyone has support or guidance to fill these in. I know there are support groups out there, but you need to know about them to utilise them.
I am feeling so so much better. Very delicate, like the slightest thing is going to have me back in bed not moving, but for now I am able to move gently, slowly and with caution, but moving nevertheless. I decided not to go for a walk with friends, they were very kind and took the children (but I am a little bit sad as they have gone to a beach, beautiful day for it, but it will make me sadder to go as this is the perfect weather for a sea swim, I can't imagine that zipping myself into my tight winter wetsuit would be easy!). DH is at work and friends are coming back here for dinner, so I have pottered and done a little tidying - before you tell me off, not hoovering or emptying the dishwasher, just a bit of moving some paperwork, moving plates from kitchen table to side and wiping table down, using my grabber to pick up some toys, dusting at standing level. Just enough to not feel completely useless.
Oh, and I had a bath in some new lavender and geranium natural bubble bath, and am now sipping some new Pukka cleansing tea. I have reduced my painkillers a little so I am not floating in a bubble when my friends return, and no diazepam today as that will just leave me blubbering nonsense and looking out of it. If I am having muscle spasms before bed, I shall take 2mg.
How is everyone else? Hope you are having an ok day? Any more improvements on the relapses?
What I can't work out is how the 'underclass' in this country are so able to claim benefit when the system has utterly defeated me?
Did I study the wrong subjects at school? Take the wrong exams?
It's a mystery.
pavlov I think you I might have caught your pain! Only stood up from eating tea and bam, some bugger kicked me in the bottom of my back and now I've got a painful leg and pins and needly feet to complete the trio. Deep joy. That's what I get for baking and cooking tea. Glad you're feeling more normal though!
Matilda I often wonder about all the forms. They seem mind boggling. My sil has MS and is terrible on her feet and constantly worn out and so doesn't work. She is bombarded with questionnaires and forms and told to report here once a fortnight and reassessed there every 6 months. It's a bit of a joke really when you see some of the folk on TV that seem to be able to claim everything. It seems like nearly a full time job for her! I hope you manage to slog your way through your pile before you loose the will to live .
fishandjam I think I've got a similar thing to you. They couldn't entirely decide at the hospital but thought a degenerative disc condition was most likely the cause of my pain as quite a few have gone or are bulging in different parts of my spine and also my sisters spine is the same in her lumbar region. Feel free to moan away, I know I do.
Have a relaxing Sunday ladies.
Argh, D&V today! Will post tomorrow.
you have to remember that this benefit scrounging group of people who claim everything under the sun, they don't really exist in droves, like they are portrayed to. The encouraged view of benefit scroungers in the daily mail etc is designed to make people shy away from claiming benefits to which they are legitimately entitled, and should get because we live in a world that looks out for those who fall on tough times for various reasons, out of shame. There is more money in unclaimed benefits than there is being paid to people claiming more than they are entitled to. More money is spent trying to catch people defrauding the system than there is wasted in people defrauding the system. In particular disability benefits. The approximate fraud rate for DLA/PIP is 0.5%.
cowmop sorry you have had a bad relapse! I hope it is not long lasting! I appear to have a catching type of back pain as several people at work now have bad backs
I took it fairly easy today and my back started to feel a lot better, then I suddenly got . bad case of indigestion which I don't normally get. So back in bed for the evening.
pavlov glad you are a bit better.
cowmop you will have to take it easy this time, hope you feel better soon.
matilda that is terrible about the forms, my friend has a m.h issue and is put off claiming by all the forms plus fear of not being believed. hope you get them all done soon.
That fear of not being believed, it's so horrible. I still have it now, some feeling that I am a fraud and need to 'man up' I kept expecting when I hadmy MRI and saw the neurosurgeon etc that at any stage someone would say to me 'there is nothing wrong with you'. Not helped I this by an Lester at the beginning telling me that stress/how my mind perceives it can make the pain worse(which, at the time, was the same as telling me I was making it all up and it really upset me and made me doubt myself). I still find now, when I am in low level pain in particular, that grinding you down but got to keep going because it's not so bad you can stay in bed level of pain, I wonder if it IS in my head. Because you can't 'see' it. Because I can't 'see' it. Maybe it's not real. I mean, I do not it is, but I regularly doubt myself even though I had surgery. I remember waking from the surgery fully expecting the surgeon to tell me there was nothing to remove, nothing wrong with my spine!
Bit stiff this morning but not bent double. I have stinging through my butt and legs, and into my groin which is bringing tears to my eyes, hopefully it will reduce as the day wears on as felt reasonably human by end of the evening yesterday. I guess I need my painkillers, taken them but they got to take effect yet.
reviving so glad you feel bit better too.
I am on a health kick! I am looking into food that have anti inflammatory properties, done this before but not with real enthusiasm 0, took much other stuff going on I guess, but now, being January, I am being healthy! To start with red wine has anti inflammatory properties, did you know that? I am ignoring the info I read about tomatoes and peppers being inflammatory, as that is a staple diet for me! I am drinking herbal tea, and appantly things like nettle and liquorice are anti inflammatory, so is peppermint. I am not going to be unrealistic and stop drinking coffee, which I drink too much of, but I am eating breakfast!! My skin has gone to shit too this winter to big big move to get my skin lovely. So porridge is big in my list!
pavlov, you have absolutely hit the nail on the head: I do feel complete shame to be applying for benefits. Thinking about it, it's ludicrous and outrageous to feel this way when I am so incapacitated and disabled.
It's also fucking outrageous that they can demand the forms are completed in such a short time when they, apparently have any length of time to 'consider' the claim
before telling you to fuck off or sending you a new form to complete whilst, in the meantime I have literally no income.
It's truly draining and the fact that I have four separate 'claims' in progress, yes, it is a bloody full time job.
I feel a trip to my MP coming on. (Have yet to meet Zac Goldsmith, might be able to ask other, interesting questions on marital affairs and the life of the uber wealthy .
Health kick a lovely idea until you start to read the lists of items you have to exclude...my skin is rubbish, too, though. I'm sure it's the drugs. I also have hideous lines around my mouth like a 60a day girl, fro screwing up my face from pain. Laughed at the wetsuit thing. I might put that on my form 'donning my very attractive wetsuit causes great difficulties and I definitely cannot so so without the assistance of four strong men' .
Hey oh, the sun is kind of shining. Have the best day you can, everyone.
I have a friend who is completely unashamed to ask burly surfers to help her out of her wetsuit after a surf, its part of the reason she goes alone I am sure of it
I am not really going to exclude too much from my diet, I don't eat red meat, and am relatively fussy about what I eat so I will starve if I am too much more selective! But, will definitely increase the things that are good, and things that I love but don't eat much of are good like avocados, green veg, which we need more of in our diet here.
I have a thread about bad skin! I shall post a link to it, but the best tip I got was to be vitamin e capsule, eat one and cut the other open and spread the content on your skin. I have to say, it's working a treat, and it's meant to help soften wrinkles, Yey! Let's hope so. I also think it's the medication, or at least in part. I also think for me it's not looking after myself enough on the days I don't feel brilliant. And although they are not as bad as they used to be where some days I didn't eat at all, I am sure I don't eat as well as I used to. I am going to change that.
I really want to go for a run! Like really. A friend posted on fb that her DH has just done his first 10k of the year, and while I have never been a 10k runner, more like 2-3 miles, it makes me feel very jealous. I feel so unfit!
I honestly wasn't having a go about claiming benefits, just wondering how anybody who does cheat gets away with it or can even be bothered if my sil's experience is anything to go by. I think a job would actually be easier for her than the stress and constant to and froing she currently does, but she just isn't well enough and it's made worse by "the system". She has been to see her MP Matilda, I think he got her in touch with people to help fill the forms in.
I know what you mean about not being believed, I felt this most strongly at my one trip to pain management. All he seemed to care about was whether the pain was a symptom of depression and a lot of the questions on the form pointed in this direction as well. As a result I ended up being all jolly to try and show it was pain and not in my head and when we came out dh was really cross with me for not stressing how bad it is. TBH I don't think there's much they can do so it doesn't make any difference. I also get it a bit at school ifrom a couple of mums in the form of "oh, how do you manage that with a bad back?" type digs. The obvious answer being, well if not me who else? You do it despite the pain even when it's quite bad because A) there's no other option and the pain is there regardless and B) my children will only have one childhood and I can't miss it or have them missing out because of me. Maybe I'm reading more into than I should because I feel guilty!
A health kick is a good thing, does today's consumption of banana loaf and minstrels count?
wouldn't it be great if we could plug our doctors /partners /skeptical workmates in to feel our pain for twenty minutes so? I often wish I could do this with my very very patient but extremely horny other half when sex is the very very last thing on my mind because it will hurt a lot.
I would love DH to have my back pain for 20 mins
maybe a couple of hours since he's annoying me today. I really struggle with some things and he just refuses to get it.
Haha, I'm somewhat with you both there. I was quite lucky earlier this year because my DH did do some
incredibly minor very serious damage to his back. He did admit that it gave him some insight into my situation.Empathy Lasted approx twenty minutes...
I'm loving the idea that doctors should feel our pain. Maybe they should also experience a range of their clients plights...dementia, syphilis, obesity...we could have a vote each month for what each doctor should sample next
Hope everyone is in ok shape. fish is your tummy better?
Big question...will pavlov make it into work. Please not if not up to it. So hard.
I agree with a plug for colleagues, and Managers. Yes, managers. DH is relatively understanding, he has had back pain before, out for several days with it, so does understand the acute pain, but probably not that knawing, permanent chronic pain that stays following the acute pain. He does know how tired I get though.
I am off to work. I got ready in two minds, and now am wondering if it's a good idea, but, it's only 5 hours right? . I have so much to do today, I can't have another day off and let my colleagues take the flak, I am not popular with my comings and goings as it is.
I danced (ha! not sure you can call it that) to some music with the children to get my mood going and pretend there was no problem, instead of my normal exercises. Probably not the best idea in the world, but, I feel upbeat despite the pain, and that's half the battle yeah? I was like, fuck it, I'm in pain anyway, the children want to dance, so lets dance! Their faces as we bopped was prize enough for the payback I shall get for that! I don't do it enough.
I have taken some painkillers, charged my iPod so I can plug myself into music and not talk to colleagues when I am not seeing clients. I just hope my boss doesn't ask to observe my practice today (it happens randomly as part of our professional development, completely pointless imo). I have some numbness creeping back in which I am not liking, around my groin area, as well as my toes, it comes and goes, but had that before, and it's not 'internal' so to speak, it's the skin. I will keep an eye.
Hope you all have low pain days, and take it easy whatever you do today.
meant to say fish, do you take anti-inflammatories, are you taking them with food and do you take a stomach acid reducing medication with it if you do, like omeprazole or similar (there are a few versions I think). I am just wondering if the AI's have caused your indigestion. hope you are feeling better.
I am going back to work today too. It is only a pt job but as I say it is in a kitchen so must be very careful. Luckily my boss has been understanding and put me in as a helper to someone else. I can stop if necessary also my mum is going to drive me about so I don't have to drive as well. Good luck with your days all and get on with your forms Matilda x
reviving hope your return to work was ok, and as easy as it can be.
matilda any closer to finishing? You will need a glass of wine or two when your forms are done! or a holiday!
me. work was not a great idea. I am in a lot of pain. pain that travels from my back, into my stomach, groin, down my legs, into my feet. It is brining tears to my eyes and I have to catch my breath. I am walking straight though, so you really wouldn't tell from watching me walk, apart from it being slow and cautious, and occasionally stopping to wince. I stood up for much of my working day, which itself meant my legs ached and hurt, but, when I sat down, it was like sitting on knives.
But, I made it through, although I almost asked my boss to let me go home early and suggested I wouldn't be in tomorrow, but I don't want to look like I am planning time off, neither do I want to take tomorrow off now as I have not planned it and have too much to do, now thinking he will be cross that I didn't warn him! So, I shall go in. I have to keep going, as this is not disappearing any time soon [sigh]
And, I took DD to her diving lessons. And collected DH from work. Although I literally crashed as soon as we got in. We are now all about to eat Pizza in bed, as a family
My back is not so bad. I can bear that/control that relatively well with heat/AI/muscle relaxants if needed and painkillers but not this leg pain. My other nerves feel a little sore, not sure if it's transferred pain, or, DH asked me could it be something else
more sinister ? But, I doubt it, just referred pain I guess.
Had enough today.
I hurt. I really fucking hurt. I don't want to take high dose of meds as it will goof me for work tomorrow
But I can't get comfy
Oh no pavlov sounds like it is really bad, I think you should take the painkillers if you have tried everything else. You won't do a good job at work anyway if you are exhausted and in a lot of pain.
to make things worse, DH has gone out as he usually does on mondays, DD is playing up, refusing to sleep. She is now in my bed, taking advantage of the fact that I can't physically take her to bed myself and daddy is not here (we both told them both to be good for me when he was out, not to come to our bed as they often do when he is not here) fidgeting, fussing and not sleeping, the fussing is making my legs hurt more and I have just shouted at her I really want to be on my own. And she now wants to go to her own bed because I have upset her, because I am in pain and got cross. But, when I wasn't cross and asked her, twice, to go to her own bed, she wouldn't do it. She cried and made me feel like such a bad mother, because normally I would go down and tuck her back in, stroke her hair etc, and tonight I can't. So she ended up with me. And she knew she would. And after she wouldn't keep still, I got cross. Anyway, I have said sorry for shouting, and stroked her hair
and now she is trying to read over my shoulder and not actually going to sleep
And DH called me weird. Not just called me weird, said I am 'always so weird'. Because I got upset that when he put the children to bed he didn't come up and spend a little time with me before going, he went to listen to his kindle. So. I have told him not to talk to me again. And feel very sad that he thinks I am weird. It's not something I have never thought. I got called weird at school when I was bullied and now I feel quite sad that my DH thinks it.
All in all, a fucking shit evening. I feel very tearful, very unloved tonight, and I could really do with someone giving me a hug and telling me it's going to sort itself out, just someone to come in and take over, you know, fluff my pillows, get me a drink, buy some fancy chocolate from the shops to cheer me up
i don't even want fancy chocolate, just the sentiment Like, my mum. Why is it, even as a grown up, we still need our mums?
reviving I have given in and taken 30mg of codeine. See if that works.
Isn't it funny how we all tell each other to take it easy, but none of us wants to take it easy ourselves. I guess because it is so frustrating not to be able to do things we feel are important.
My back felt a bit stiff after work not too bad am trying to rest it this evening. Having a hot chocolate and going to bed early, yet again.
how was your first day back though, ok? reasonable isn? Do you think you can manage from now on ok?
I am glad it was bearable. Hope you don't suffer too much tomorrow for it. I only ever go to bed early these days
Aw pavlov I x posted with you the best I can do is send you an unmumsnetty hug [[hugz]]] and some and and [fancychocs]
It is shit when you are ill and no-one looks after you. I always do call my mum I am lucky as she has a bad back too and is understanding.
btw i am weird too, nothing wrong with that, at least we aren't boring right?
Oh I just realised that hug looked like a link so I made this a real link hugz
Thank you <scoffs> <slurps> that'll go nicely with the codeine you are right weird is not boring
My mother passed away a few years ago
this month so alas no late night teary calls to her. If she was here, she would be fussing around cleaning up, making drinks, changing clothes, running baths, making food, you know in that kind of busy way that doesn't feel like she is annoyed about it, or it's stopping her from doing other things, but in that way that is just all about being a 'mum'? I would probably be saying 'stop fussing!' by now though, in reality
pavlov, you are not weird. I'm good at spotting weirdos and you are not. Yes, in intolerable pain, feeling desperate for an end to this endless crap and want a normal life.
Quit feeling guilty about dd, she pushed you, got shouted at and will be just fine. Quit feeling guilty about work...truth is you weren't well enough today and probably won't be tomorrow. On that basis, take the fucking painkillers (not swearing at you), because you might as well be comfy and spaced out rather than feeling shit. Can you get a hottie, pjs on and a good strong dose of medication.
I'm a bossy nurse and it's for your own good! live is right! no good dishing the advice and not following it. I really hope you stay home tomorrow and rest.
I finished the bloody form! It's sooo long. If you are free in the next day or two I might ask you to glance over it, but probably it's fine really. I either qualify or not. And probably won't hear for so long I will have forgotten anyway.
Glad today was ok live, you are the example that people do get better. So glad.x
Sleep well, everyone.xxxx
Oh sorry to hear about you mum pavlov have another wine don't get drunk mixing it with your drugs though. I am sure your dh will stop being a
dick guy soon and develop some empathy, especially once we get that pain transferring device online.
matilda here is a for you to celebrate finishing that form!
Btw they let me take 60mg of codeine when I was really bad and it was ok but no good for my digestive system.
matilda Thank you, I needed the kick up the ass. I know I am not weird really, well, I think I can probably be weird sometimes. But, I don't really need to be told so. It's not helpful to say so even if I am, I mean, what can I do about it if I am ? I have taken meds, but not diazepam, as I don't think my muscles are spasming, this is definitely definitely nerve pain, but weirdly no pins and needles, no real numbness in feet like I have had before, this is actual real pain, and now some throbbing in my legs. I can only describe it as rusty nails being pulled in my back, and being dragged down through my buttocks and inside my legs. I don't even know why I think that as how would I know what that feels like?
Definitely send the forms over if you want to, I am happy to read through them. I will PM you my email address as don't think you can add attachments to them. I will be astounded if you were not eligible, but I am not Mr Prime Minister who has changed the goalposts so what do I know!
I have just had a bloody good cry. I have my heat pad, I have got up and stretched my legs. I don't have chocolate as I ate the virtual chocolate given to me already, I do have port but not a great idea to have any of that I feel a bit better, not necessarily pain wise, but mentally I can cope better.
Thank you for listening to my shit.
reviving have you got heat? if you are feeling stiff this evening, heat will ease it.
I normally take 60mg if I am in a lot of pain, but that is my max reserve. I really don't want to take that much as DH is out and I haven't taken that much since post surgery so it might knock me sideways a little. Although, 30mg doesn't appear to do much, so probably not. I have in the past taken 60mg codiene AND 200mg tramadol. I called OOH once as nothing was touching the pain (pre surgery, it was horrendous at times) following one relapse and he said it was actually fine to take both, they just don't advertise it, and he wouldn't recommend it for more than a couple of days/if I'm on my own. So, I took it. I was a little fluffy cloud of goo for a few hours I don't even think it actually stopped the pain very much, I think it stopped me caring very much
I am going to try to sleep. That might help. If I can't, and the pain doesn't ease, I will up the codiene to 60mg at next dose. Wow, it's such a lot isn't it? I mention those type of doses at work and they look at me like , I guess as you can only buy co-codemol on 8mg/500 tablets, it seems like a lot for them.
It is really annoying I have lost my microwave hottie and don't want to waste a stick on pad boo.
oh no! that actually is really bad, losing the hottie! I have 3. plus a larger water bottle one. Not that I am obsessed by them or anything ooooh noo! I have one for work, one for the freezer, one for heat at home. I also have a spare one for the children in the freezer as they are quite good for children's bumps and bashes (gel packs) and my cat 'bought' me an actual water bottle type thing for christmas, as he obviously thought I didn't have enough
It might be worth using a stick on one you know, so you can ease the muscles.
Hope you sleep and the codeine helps, im sure its fine short term at least.
Yeah I will use the stick on one.
rest well, hope the pad helps and that work is not horrendous tomorrow. I am going to say I shall consider going, as in I will get up and go through the motions but not make any actual decisions until after my shower and a coffee. If I can get that far, I will be ok to go to work.
Sleep well everyone else too, fingers crossed for a reduced pain day for everyone tomorrow x
Heat patches sure do work, I bought a huge supply in Wilkies the other day.
pavlov, sorry about your mum. That's crap. Mine isn't a lot of use at this tbh, she actually does call me a cripple! Still she helps when she can and I can't imagine not having her. And men. Men.what can you say. You gotta love em.
Not being a kicker up the bum now (not greatly suited to the task) but if you need it, take it. I mostly take 60mgs twice a day and sometimes top up with tramadol plus the regular gabapentinand naproxen. I can't stand the pain otherwise.
Sleep tight. Tomorrow's another day.
pavlov Sorry you're pains still bad. Take the meds, it's hopefully only a short term fix to get rid of the acute pain. I worry about the pills I pop but I have given in and take the drugs now. On a daily basis I need the naproxen, Nefopam and pregabalin to function and have been taking 8 30mg codeine for the last few days to stay upright. My friend told me yesterday to take paracetamol as well as they can increase the effectiveness of other drugs. Hope you are ok toady, I'm not going to tell you not to do too much as I know it's fairly impossible not to!
Matilda, congratulations on getting the forms done, I hope someone useful picks them off the pile and runs with them so they get done quickly and you get what you are entitled to and need.
live, well done getting through your first day back. I hope it's onwards and upwards from now on but as my mum would say "just go steady".
I'm off to pilates this morning so hopefully can stretch out some leg and foot pain and will possibly be able to move my left arm by tonight. Bonus.
cowmop, your friend is right! I was told the same by a consultant anaesthetist. I had to take paracetamol with oromorph for the very same reason. Cocodamol 30 does the job for you as they are combined.
I have counselling today. A whole hour of rambling on about myself. Poor woman, I hope she's well paid. Since it's NHS I doubt it, though.
Let's all adopt cowmops mum's advice today and go steady.
You are all so lovely.
cowmop yes yes to paracetamol, they are part of my staple diet now I remember when I first started taking tramadol for pain I didn't take paracetamol with it, didn't think of it, and it wasn't doing as much as I wanted for pain. GP reminded me of paracetamol, I took it, and wow it actually made a HUGE difference. On it's own it doesn't touch the pain, but with the opiate, it causes some kind of reaction and it works together. Same with anti-inflammatories, add them to it and they all work together better than each one in isolation.
I got up with the children, got them dressed, had buckets of coffee, ignored the pain in my back and legs until they left for school with DH, and now back in bed (I didn't want the children to see me back in bed, yet again). I emailed my boss, he just called and I burst into tears poor man. He really has a tough team to manage! Anyway, I am not at work, and told him I suspect it might not be just today. He was quite sympathetic as I guess he had to be with a blubbing woman on the phone.
I have taken 60mg codiene, paracetamol, naproxen, omeprazole and I am now rattling proper with meds. I only just took them as I wanted to be able to string a sentence together when I spoke to work.
I feel soooo guilty. My colleagues resent me being off as it is. Oh well, I can't change it
matilda are you finding the counselling helpful?
Well my back is a bit stiff and achy this morning. Am going to give work a try but if it starts getting any worse am going to think about it. Its very difficult because it is not that bad, I'm sure you ladies would not even notice it but I am worried it will sneak up on me as it did before. But don't want to be a wuss about a slight ache and a bit of stiffness.
matilda hope counselling goes well and no more forms arrive for a bit.
pavlov hope you feel a bit better and are in bed with a heat patch resting. I know what you mean about feeling guilty but it is not your fault and we will plug your resentful colleagues into our back pain machine and zap them too. If only we could! They would be thanking you for coming in at all.
cowmop hope pilates goes well and loosens you up. I might look into something like that. I do have a DVD of pilates for backpain do you think that would be safe to try? I will take your mums advice and go easy
Have a goodish day everyone.
AH! I knew I was missing something. my heatpad! I am sitting here thinking there is something my list of meds that I don't have, and also thinking it's quite cold. Thanks!
Don't minimise your pain live, honestly, none of us here has the upper hand on back pain and levels of pain. You know if you can manage it, and if you feel it is becoming worse, then definitely stop, even if it is still manageable. If you stop before it gets too bad, then maybe you can stop a full relapse. But, who am I to give advice eh I also find myself, that following a reasonable length of time off work due to back pain, that the immediate return to work does increase pain a little as I adjust to new positions etc. However, I don't have a very active, physical, constantly bending and lifting job like you, so an increase in pain is much more likely to be a red flag. Caution. As cowmops mum says, go stead that could even be our motto couldn't it
signed off for two weeks (to start with, says the GP) and a slight telling off that I have tried to work. reminded that nerve pain takes longer to go away than back pain following a relapse and to give it time.
Well that's kind of good...I think. Poor you. Although getting fired was somewhat crap , I'm grateful that I don't have the daily battle.
You have to try to stop feeling guilty. Not sure how but it's not your fault. They know that, too. Please, please rest, enjoy the rest then rest again. Got any good box sets?
I'm seeing my GP next week and among other things I'm asking to try the slow release tramadol. Thinking it might help with the daily juggling act between activity/pain/analgesia.
I do like counselling. I'm very unsure how it helps but it's an hour of saying what I like.feeling 'got'. Also it feels safe. It's the same place I did Pain Mangement and it feels safe being there. I'm not looking foward to being discharged. I still feel that the rage and trauma are bubbling away but frankly, how can they not be and how can I deal with it any better?
With a long legal case pending I think the support will be really helpful though I probably won't be kept on for all that time.
Steady now girls, steady
I am glad you are finding the counselling helping. As you said, how can you experience what you have and not have anger there. It's all well and good people (professionals, I am looking at you here <stern face>) talking about coming to terms with a disability, but when it is so utterly life changing, it's really not that simple. Especially in your case when closure is not yet in sight.
I definitely advocate the slow release. I don't tramadol at all now (I should return to it, but it too a lot of time, and horrible withdrawal to come off it) but, the slow release was fab. As I said when we met up, there's just no seesawing of feeling it working, the high of it taking effect then the low of it reducing. It is more gradual and constant and means you can feel the affects during the night too, and top up with normal tramadol to the max limits on the days you need to. The thing with tramadol is it is a seretonin uptake inhibitor so it increases positive mood, and when it increases/decreases it can also increase/decrease mood accordingly and that did my head in as much as the pain. slow release much more gentle both emotionally and physically.
I almost asked the doc for some today. But, I didn't get on great with it in the end, it felt like I had built a tolerance and it wasn't doing so much, and any time I missed a dose I felt shocking, not pain wise, but emotionally, and got horrible withdrawals, so I seemed to end taking it to stop withdrawal not for pain relief. And, so I went cold turkey, tried several times and it was not pleasant, but one day I seemed ready and it took 3 days of feeling goddam awful, but was expecting more, and worried more about the affects on mood from stopping. Possibly why I get more bouts of depressed moods as it made me 'happy' But, I think if this pain is not going to disappear anytime soon I might as well just take it again.
I have done the school run. Lovely school let me park in their carpark and sent DD out to me. But, the driving, getting the kids settled with snacks and my legs and feet are hurting again. Definitely going steady.
On the plus side, DH went shopping before he went to work and bought a lot of snacks for us - pistachios, almonds
bleugh trail mix, greek yoghurt and honey to dribble on it. We are all in bed, watching TV, having a feast
Agree with you both. It is good to discuss life changing events. For me it was suddenly going from very fit to hardly able to function due to CFS - the back trouble may well be less if I could do more IYSWIM. I had some counselling too and it helped a lot. I felt so guilty for ds who was just getting to an age where he wanted to do the active things I used to do and now can't. I came to motherhood late so felt guilty for that. It helped for someone to say it wasn't my fault. I know I know! It helps to realise that this could have happened to any one. I do miss counselling. I think I could do with a top up from time to time!
Pavlov Sorry you have had a 'flair up' ( using this phrase to ward off other possibilities). I so hope that's it not more serious. Do remember the 2 weeks may not be enough - its just a standard time to work out what you actually need.
If I have my way (and nothing more urgent intervenes as it always does) the next big expense in our house is going to be a magso sized easy chair! I was better on holiday where the settee was very small and shallow - spot on for me but a bit shallow for Dh and ds ( who sits with his whole legs up out straight). At home I tend to curl up which is not helping!! Perhaps a nice semi recliner!
My BIL in USA swears by therapy, long term therapy, not just a little bit here and there. He has had a therapist for years! It helped him through some tough patches in his life. He considers it odd that the UK doesn't use therapy enough to manage crisis in life.
yes to a personalised seat!
I am sure it's nothing more than my disc being a pain. I sort of wish that the MRI happened when it was a bad flareup to see what is really going inside. I suspect not much on the last MRI as even though I had pain it seems marginal in comparison I know it was not minimal pain, but wow, this is right back at the beginning on the pain scale. Although, positively there is no horrendous back spasms that refuse to go away and have me walking bent over. Just slow now
pavlov sorry to hear it is going to take so long, but saying that, you do sound in a lot of pain. That thing you said about having rusty nails raked down your back was very descriptive.
matilda glad your counselling is helping, maybe you could afford some private counselling if your NHS counselling comes to an end, but you need a really good person of course.
I got back to work and everyone was very nice to me and pleased to see me which was great, but it was quite hard going for me. I felt really tired after and my back was sore. I think the tiredness is because I am not fit, so I have to work on that. I will have to see how I feel again tomorrow, but it is a bit difficult because everyone is pleased I am back to work.
live great that things are going well! it sounds as if you could do with it being less, though. Is there any way of shortening your shift? Problem is, once you're there and everyone said lovely to have you back, they forget really.
pavlov, glad I'm not sleeping in your bed! Sounds as if it might be very gooey with honey and yoghurt spills...
Re your MRI, I'm not sure that nerve inflammation really shows up anyway. When is your review? Do you think injections might help at all? Anyway, too many questions. Just rest and swallow drugs for now. It sounds as if Christmas and London have truly caught up with you. Glad you told me about tramadol and serotonin, I'm not depressed, I think, but every little helps . I am fed up but that's different.
magso, nice to see you. A heated recliner could be good. With a glass holder. Counselling has been good. I don't think I will be paying privately though. It's £90/hour and I do have really good friends who do pretty much the same tbh.
Take care, all. I'm meeting up with my Pain Group tomorrow. Whoever would have guessed?
Glad to hear you've got the note for a couple of weeks pavlov, hopefully some rest will get you back to your normal. I used to be the same as you describe on tramadol, but it was sort of worth it for the hour or so of decreased pain. It clashes with my epilepsy meds now so it's out otherwise I'd be asking about the slow release one you mentioned. I like the sound of your snacking, if dh went out for snacks he would return with his body weight in biscuits but I'm a savoury kinda gal!
magso, a recliner would be bliss I think apart from having to fight the kids off it. My friend has one of those spinning easy chairs, it's really quite massive and holds 3 kids, before we go to her house I have to read my youngest the riot act about not using it as a roundabout. Maybe we could have some "just go steady" fabric printed up, incorporate pavlov's heat and Matilda's glass holder and take it to the open market!
Matilda I'm glad the counselling helps, it's a huge thing to come to terms with and can very easily drag you down. Your right about the not depressed, just fed up thing although it's hard to get some gp's etc to understand this. Hope you go on alright at your pain group.
live, you are obviously a valued member of your team at work, but don't let them put on you just yet. It's easy for other people to forget you're in pain. Maybe we should have "oi, it hurts" badges made as well as the recliners?!?
I've had to bite the bullet this morning and get mum to take the kids to school. It's not very often I don't hobble down there but I just can't today. I've bought some paracetamol to add to my drug mix after hearing your votes for it so hopefully it might take the edge off a bit. The pilates instructor took one look at me and went "feeling rough?" which was nice. She says to try acupuncture again, but with a specialist rather than a physio, she's got a bad back herself and has told me who to ask for so I'm going to give it another go. Nothing ventured and all that!
I hope you all have as pain free day as possible and just go steady (as much as possible!)
Sorry for the epic post and many grammar fails!
matilda I spoke to pain clinic about the injections, he was reluctant to arrange them until the MRI results came back and I had seen the surgeon again. He did say he would speak to the Doctor who does the injections to see if he was prepared to do them while waiting, but he has not got back to me about that, and to be honest I felt like he was bullshitting me to get me out the door and not have to say an outright 'no'. I was offered it last time before surgery, so don't really get what is different now, apart from no MRI result yet. But, I would be happy to try the injections absolutely, in fact, even if surgery is discussed again, which I don't think it will, as nothing is probably going to show in the MRI that can be fixed, I will try the conservative routes again first (I had the caudial/epidural injection not the direct nerve blocking one last time, it did work for a couple of weeks, but that was all).
Is this counsellor available for private sessions, live has said consider private, so it might be worth exploring if you are finding the sessions useful? Especially if you are awarded PIP you could use some of it to fund a few sessions. Although, the reality is that money is most likely already spent on horrific expenses, it is worth considering as a way to support you through the coming months.
live that's a huge problem with returning to work, everyone is glad you are back, so if you need to be off again, you are faced with that added pressure/guilt! I know that our employers pay our wages and in effect allow us to live, but, I sometimes feel they own me, they seem to expect such huge explanations and need to know so much personal information about my disability in return for paying me sick pay, and the guilt I feel when not at work is almost worse than what I feel for not being able to be as good a mum as I would like. I agree, a phased return might be a good idea, doing less ours for a couple of weeks and building up slowly. Is that possible?
My mood is better today. I think the weight of not having to go into work and no expectations from me other than school run, and I have that sussed with little effort has made a huge difference. It has also eased the pain I think as I am not stressed. And I am not doing anything! When I do too much it is hurting a lot, but simply taking away the day to day routine has improved things already. I might suggest to DH that we go to the gym this morning together, not for a swim, but to sit in the spa, sauna, get some heat going on it, and maybe a coffee after, just to get me out of the house and not just for the school run. We shall see - I might find getting dressed is enough to wear me out, it was yesterday!
ex-posts sorry cowmop sorry you are feeling bad today definitely go steady. I love our collection of marketable things coming together. If I win some windfall I will design us that chair with all our bits and bobs on, we will make a fortune , hope the paracetamol takes the edge off with the other meds and you can rest today.
Hope everyone has been good and steady today. I've had an epic day of meeting up with people for chats...actually quite exhausting and finished with a long conversation with my lawyer.
So, I met up for coffee at 11am with the bods from my Pain Management group. So far, so good. Now one particular lady was, well, odd. Quite odd. Happy to share very intimate details with all and sundry for ahem, long periods of time. Generally quite depressed. Anyway, today I arrive, codeined up and she jumps up and says 'I'm buying us all Champagne!' Well, we all look a little surprised and say oh goodness, how kind but shouldn't really, I'm driving etc. undeterred she goes off to the bar (it's a riverside bar/ restaurant ) and returns with two opened bottles of champagne nuts! olives the lot! There are 6 of us.
So we sip at the bloody Champagne, finally suggest that coffee might be nice, too and have a nice time. When we left, this lady attached herself to another (the quietest!) and announced they could go into town and spend the rest of the day together. I'm afraid I made my excuses and left.
Odd, no? At least, not what I was expecting. Will suggest Costa next time .
My pain was bad this morning but at least hasn't spiralled out of control. Hope you are all ok, too.
Well strange but I guess a good way of managing your pain! I had a better day today lay in bed all morning till just before work and had another lie down after. I got back up till just now when I have gone back to bed again with my microwave hottie, which I found yay! It was my mums suggestion to try to rest a lot more, mums are great. I also tried to go steady at work, as per cowmop's mum's advice. It is not always possible there though as it is so busy. I have a meeting tomorrow, which will cut into my lying down time but want to see my boss and may be able to ask if there is any more they can do to help.
Hope you are all ok and lying down with drugs and heat pads as well.
Yes, I am! Boring aren't we...
Just a thought, would a lumber support help you when working? It's a wide, stretchy Velcro band. You can buy at the chemist fairly inexpensively. I used mine quite a bit until I lost it. Losing things is another common theme really .
Keeeep pacing. ( the 'in' lingo for rest, potter, rest)
live lying down is most probably my favourite ever activity now. In particular with a hot water bottle of some kind and my duvet
and the laptop I am glad you have found a way to manage a little bit better, hope the meeting with the boss finds some helpful solutions for you. enjoy your lying down right now I won't be too far behind, hopefully.
matilda how odd! nice, but very weird. But, tbh I am not a huge fan of champagne at the best of times, prefer prosecco, could happily quaff a glass or two of that at 11am but maybe not if driving and not if it meant shopping with someone who had probably finished the rest of it by midday! Did she have a reason? Celebration of you all meeting together? winning some money or something? I mean, it's not cheap but especially not in a restaurant!
Back's gone again. Went swimming with children. They promised to be good,and they were good mostly. But, it was a bad idea. Putting ds/ trousers on him after getting out, bent down, got up, got stuck, gone. Foot is painful, some cramp which I don't know if it's linked or not, and some tight pain around ankle, aswell as butt and leg pain, pressure on bowels (but all working fine). I would say, it's definitely my disc. The pain is very deep inside. Ffs.
I went with a friend, who took her little one too. She is pregnant, so not able to do huge amounts herself, but insisted on carrying my bag to the car and made late lunch for us all at my house. Lovely friend.
Oh no Pavlov I remember once a few years ago I hurt my back and went to a hydrotherapy pool but hurt my back more getting dressed again after. Also at that time I went for some sort of electrocution (tens machine type thing) at a sports clinic it did help a bit but by the time I walked back up the road to my taxi it had gone again. Hope yours is easing off a bit by now.
I am feeling a bit better today. I have gone back up a bit on my drugs and restarted taking my codeine. I was finding.evenings getting very achy. The physio wants me to reduce drugs but the dr has given me some more so ha! Also the physio hates my cheap crocs-style clogs as they have a stiff sole and are a bit clompy. He says this is very bad for spine. I will try to do both things and reduce drugs once pain is bit less also try to find better, but still cheap, shoes. But as for the drugs I will have a couple more days at least until I try to reduce any more.
It's funny the different advice that different professionals give isn't it? Within the same field in different counties/hospitals, in different fields in the same area, I get the impression no one really knows how to handle back pain, not even those who are specialists! For example, my physio told me to up my painkillers when I was increasing certain activity, my GP agreed, then the pain clinic said reduce the anti inflammatories! Although, tbh my view of GPs are they are medication happy as they have such little control over much of the treatment/it's what they know. My GP, lovely as he is, happily gives me as much medication as I require. Which is great as I am sensible, and perhaps not using it all enough, but it's not necessarily the answer to back pain. Although he is not easily encouraged to prescribe muscle relaxants, a friend has a back problem and he won't prescribe them for him. He upped his readiness for handing out pills when I got a diagnosis of disc problem, then he was like 'right, what do you need?' And he always asks me now 'do you have enough of everything?'
Are you still working? Is that why you are finding the evenings so hard? Haver they made any adjustments for you in the longer term?
If you have had problems before with your back, do you think this is a follow on from that? My back 'went' a good four times before it finally 'went' badly and from which I didn't ever really recover. I wonder if this is a continuation of a pre existing problem, with perhaps your disc or something else going on? If it doesn't go away after 6 weeks (it's been that long at least right?) you can and should ask for a further investigation like MRI.
Back is stiff and sore, but a little better than I expected it. Stinging through back and legs is getting me down though. Kept me wake last night and it's just there all the time, whether I am moving or not, but worse when moving around.
I have a follow up pain clinic appt on Wednesday, no letter, just an automated call to 'remind me' but at least I got it in time. I think this a meds review with nurse practitioner so I am going to probably have to consider pregabalin if they won't offer me something more practical like a tens machine, as I have I think reached the end of my tether with it. The pain has gone from around 7/10 to probably 5/10, but it's now constant.
And I have to take dd to swimming party 30mins from here and entertain ds while she is there, go buy a present first, get kids ready etc, DH is working today. I just want to go to bed and stay there.
I, too had a few 'episodes' before my back went for good. Now, when people I know have episodes I say, please, please listen. You back is speaking to you. I've also had heaps of sessions that theoretically help, like going to the pool but actually the sheer effort of it all out ways any benefit. I shudder to think about taking children ( wags the naughty finger at someone). And yet, yes, we've all proved we are ok if we do nearly nothing but is that a) a life anyway or b) possible?
I had a very rare quite good day on Friday so yesterday was crap. Today, well who knows? I haven't left my room yet.
I now think that I will listen to all opinions on my back and pain but actually I am the expert on myback. How studiedly frustrating is this merry go round of wait for this, might do that. Meanwhile our lives are blighted. pavlov could you call the pain clinic to ask for an update on the doctors' ahem, discussions? Reiterate that you are off work.. Are you still waiting for the MRI result? It's bloody ages since you had it. Very unacceptable..
I may have a spare TENS machine knocking about if you want one?
live, we've had major shoe debates on here. Sadly the better shoes for us back girls are more expensive. I'm currently in my Fitflop boots everyday and my Fly London ones for going out. They are both very, very comfy and cushioned. Failing that, good trainers would work. Ditch the Crocs!
I'm going on holiday next week, yay! Actually I'm very nervous. I'm visiting family a long, long way away. It will be veeeery hot and it's a long flight. My DDH (!) has paid for a very expensive flat seat and I'm booked in as needing assistance. I'm hoping that the good bits will outweigh the bad. Also nervous that the house will be a tip and the animals dead. Did I mention I'm going alone?!
The day before I go I've got injections up in Central London and another appointment there the day I return. Busy girl. Ah well, if it's all a terrible mistake I'll know for next time.
Good timing for me, I'm knackered, stressed and fed up with all the forms, statements and detailed law stuff. I need a break and want to be far away when the first surgeon finally, finally gets a taste of his own medicine. Utter, utter bastard.
Have a good day, everyone.
matilda far away and hot! On your own? Oh lovely. And exciting! You bloody deserve a break. And how lovely of your DH! Yes yes to assistance. We are potentially going to USA in summer and instead of looking forward to it, I am actually panicking at the flight, especially with two children. But life is to be lived yeah? Are your forms in now? And good luck with the legal stuff.
Thing with swimming. We only went to my gym, where kids go free, dd can swim, ds has armbands but is water confident so it should not have been a huge deal. Being in the water seemed to aggrevate/highlight the nerve pain. But it was getting them dressed after that was a problem.
No MRI results. GP said if nothing by Monday he will chase it for me. It's been since 4th December (0r maybe 3rd). It's beyond a joke now. And seems consistent, I seem to wait forever for every tiny step. There is no urgency to any of it. And I know he had results quickly as pain clinic told me he would likely have had it within hours, if not the report itself, which he wouldn't really need as surgeons read different things into the MRI than say the pain clinic as their decisions are different and he wouldn't really care what the report says.
I've had enough, actually really truly. DH is trying to get his shift covered today as I really am worried about how I am going to manage what needs doing today.
I'm finding it hard to find the thread that's right for me - and I'm feeling frightened and alone. I'm on the Tax thread which is super supportive but the C word scares me (largely because it MAY, gd forbid, apy to me - but the biopsy I've had is inconclusive. So here goes:
I have no pain
Just ache in my hip at night and along the top of my pelvic bone - also at night. I've shrunk a bit, according to a recent height check and I have one leg a bit shorter than the other.
No big deal!
Thought I'd get a new mattress. Thought I'd get a referral (private insurance, thank gd) to see what this aching at nights all about - wake up at 2am for a couple of hours, or from 4am I'm up. It's NOT painful. Just achey but after about a year n a half, thought I'd check it out. Thought I'd also sneakily ask consultant which mattress to buy.
So here it goes:
Didn't want to give me MRI and X-ray until I'd had Physio but offered it. I accepted. He said pointless really as 99.9% sure nothing would show up on it. But accepted as aching couldn't be nothing and he could to to odd any explanation for it & didn't even know what to tell Physio!
MRI showed shortening of vertebrae in lower back
Second MRI requested
Second MRI showed ('scuse my French, I'm still in shock and have been swearing A LOT) a fucking tumour in my sacrum and spinal canal!
They think it's a melanocytic schwannoma
But biopsy inconclusive
So can't rule out a low grade sarcoma
If you don't know what these are, don't worry. NOR DO I!
I'm not in pain
But I will be and I'm freeeeeereaked out
I've a 3 k a 6 yr old
Oh, and I'm down for spinal surgery where their aim is to get it all out and preserve as much nerve function as possible, find out what it is and... I think it's not going to be resolved in a flash. It's already taking over my life with tests, MRIs, pre ops, more tests, urinal diagnostics,
It's such a shock
I'm so sad
I had no idea
Not did they
GP called t apologise as he had and 'would've had no idea and didn't even know how to spell it (schwannoma) as it's so rare' (his words).
oh goodnessknows how absolutely terrifying for you! You are absolutely welcome here, for hand-holding at the very least. There are lots of different types of back problems experienced by us lot here, there is no one set type of situation although there are some common themes that's just how it's ended up, so you will at least find sympathy even if no other person with the same condition.
Do you have support in RL? you have such little babies! There are some spinal health support groups around, and you may find if you take a look at some of those forums there may be people there who have been diagnosed with the same and may be able to guide you through the next steps. one is called Spinal Health I think, will try to find a link.
Hi goodness I have seen your other threads. You sound a bit freaked out. Hope you are getting plenty of support in real life. The posters here will give you great advice on the back related problems anyway. I am just recovering from a bad case of sciatica and they have helped a lot.
Going back to my previous post, yes I did have quite a lot of minor episodes of back pain, plus one really bad one which they told me at the time was a torn muscle in my back. Maybe this was a bit of a misdiagnosis thinking about it, as from what I have read the spine is usually in some way involved. Anyway that was about 10 years ago but I have always had a "weak" back since then and would often get minor back pain, but this is the first really bad episode and it was worse than the other bad episode I mentioned. That time I did not have the sciatica it was all in my back, though it was in the same location which makes me wonder if it is all related.
I do think my pain increased going back to work, and I was tired. But I felt a lot better this weekend. I am going to see how I get on this week, taking the painkillers if I need them and being careful at work and resting as much as possible when not at work. It is a bit annoying because while I was away it was agreed I could have an assistant however it takes ages to find and train/get paperwork approved (not sure why it is a very simple job)so it will be probably months before I get one, when I could really do with some help now, when I am better will need it less, but will still be nice.
matilda I am very jealous of your hols! But you deserve it. I hope the trip out goes ok. Do you have medical care available there if you need it? Hopefully a relaxing break somewhere warm will do you a lot of good. I know cold weather does aggravate joint pain for a lot of people, so maybe you will find warm weather is good for your back. Let us know how you are getting on with the packing.
live my first ever bout of back back pain was about 10 years ago. I could not get up at work after it 'went' for no reason. Diazepam and two days in bed and it was back to normal, never to be problematic again, and I forgot all about it.
Then, it re-occured with (well, I now know what probably caused it, but 't digress right now), my back 'going' when i bend hardly any distance to pick my son off my bed when he was 10 months. I went so badly, and the pain increased over about 2 hours, that I had to crawl, bracing myself every few minutes to get to the bedroom and it took me, no lie, 45 mins. I could not reach the phone. DD was 4.5. She had to get a chair, get the phone and call DH. He came to find my bent over the bed, unable to get in it. Luckily, DS had been put down for a nap and was asleep at the time. I had to wee in DS's potty, and screamed when my legs were touched. Emergency Doc prescribed codeine over the phone, I wasn't seen. When I saw my own gp that week, he said it was pulled muscle or ligament. I was off work for two weeks, it got gradually better and then it was like it had never happened by 3-4 weeks onwards. It went again about 4-5 months later, not as severe, but bit of time off work, and again it disappeared. Again, told muscle problem. This happened several times. In the middle of all this, when I was feeling absolutely fine, I had lots of twinges of pain in my legs, but no backpain. I didn't know really what sciatica was, and it came and went enough that I convinced myself these types of aches and pains people just got from time to time, but no-one complains about every little twinge. I honestly thought I was just making a big fuss and so ignored it, even though it bothered me I just pretended it wasn't there. It was not major, it didn't disrupt my life and I definitely didn't connect it to my back.
Then, two years ago, just before Christmas, it went again, badly. Really badly, and after two weeks, it was not ok. And I went to the GP following christmas holiday and said it had to be something other than muscular. He said I was too young/not overweight/didn't smoke/otherwise fit and healthy (he had said this before and is why he said muscular) and so was confused as to why my symptoms suggested disc related, which he reluctantly admitted it did (I didn't think of disc problem then, really although Dr Google suggested it might be). he said i just didn't fit the criteria, however, he agreed to refer me to osteo and it was the osteo who said without even touching me that it was my disc and it appeared I had the problem for some time.
ok. I talked far far too much there. What I am saying, is those diagnoses of yours, saying muscular, very, very likely to not be muscular. Sciatic pain is always due to a problem with the nerve, and although there are numbers of other causes, it is never normally muscular. It might be a disc, but, could be stenosis or other structural issues impingeing on the nerve, maybe sacral not spinal itself, but, it's definitely definitely not muscular, although that does not mean your muscles are not screwed from the rest of it. You are right, mostly, the original cause of back pain with sciatica is spinal in some form. And, this has not gone away after a few weeks, like it has in the past. This reminds me of me, it's there, you are desperately trying to get on with your life, but actually, it's still very much a problem and now you are having to adjust. This is not 'a bad bout of sciatica'. You need to go get some more tests. You need an MRI.
One thing I have learnt with medical professionals. You have to ASK for stuff. INSIST on stuff. Don't wait for your GP to offer an MRI. S/he is unlikely to as it costs and they have targets to keep within. Don't just accept medication anymore.
OK. Nag over
I meant to say re sciatica. it was only when the osteo asked me if I had leg pain, and I said yes it was quite bad with pins and needles etc, and we discussed history of back pain that I realised the leg pain I had been having was sciatica and I didn't even know that's what it was! so, my disc probably 'went' that first major time when DS was young, and it was getting worse over the year or so.
And I remember when went that time, first week in October 2010. And suspect I know why. Even though it had 'gone' at work that first time which was like 7 years before, that might, or might not have been related but there was a very specific cause, and it was not realised until a MNer suggested a link, and confirmed as probable by neuro - my spine was hit by a glass shower screen, fell on it from height. At the time I didn't pay much attention to it, I had a small cut and a small dark bruise on my spine, local pain from bruising. It was ignored as I broke my nose in the process (shower screen had fallen off brackets after I had stood up from crouching below it picking something up, fell forward, hit the sink, which broke into large pieces and hit me in the face as it flew apart, and then the screen slid down my back) and had a head injury and so in A&E they were largely checking I had no serious head trauma. I didn't, just a cut eye and broken nose.
Funny thing is, my back then 'went' when I bent to get DS from the bed 10 days later. I know the date, as it was a saturday and I was due to go into hospital on the monday to have my nose straightened and I dragged myself there, and they gave me lots of strong codeine in the hospital on an empty stomach. I could barely walk! But, I still didn't connect those two things as the bruise and cut had mostly gone. So, the neurosurgeon thinks I probably cracked a vertebrae at that time, and it healed, but the glass knocked the vertebrae out of alignment very slightly and it healed in that position. It would explain why the rest of my spine is fine and why over time the health of that disc has deteriorated, as it was damaged.
How crazy is that?!!
Hello*goodness*, glad you've joined us. As pavlov says we all have differing complaints and diagnoses but we all have spinal problems and several here have had surgery. I know your husband is away, too so just an all inclusive crap time for you just now. Have you tried downloading and Mindfulness apps? They are quite soothing. Do keep posting here, due to our problems we're around quite a bit.(although not at 5am. Poor you
pavlov, bloody hell! What a horrible accident. Was it at home? Just goes to show, you never know...how is the pain today and did you get help yesterday?
I'm in agony. Just walked sooo slowly but for a reasonable distance with friend and dogs. It was so beautiful in the park, but my back and leg were just getting worse and worse. I HATE complaining about it all the time so didn't say much but OMG I'm so glad to be home, lying down on my hottie. Think I overdid it yesterday. The sad truth is that I can do roughly 20% of what I used to. when I gather the strength and the codeine kicks in -- and I get off mn-- I am going to do a final check of the dreaded forms and bloody well post them! Then I promise not to mention PIP again for a while.
live, hope you do get the help! sounds like you will need it. Quite honestly my kitchen is the room I struggle with most. Bending, lifting, carrying. None of it good or possible.
I agree about the pre warning episodes. We probably all had them. We just didn't realise. Gps are sadly very poor at diagnosing discs IME. Apparently 95% of people who present with back pain are not discs so it's a fairly safe bet to say it's muscular. Even those who do have bulging discs do get better in a few weeks. I paid for an MRI after three weeks and even though it doesn't make you better, I felt better to know what the hell was wrong with me.
Just spoken to secretary of neurosurgeon. He has still not looked at my MRI. Even she sounded fed up this time. She of course made excuses for him, but said she will chase him tomorrow and get him to put something in writing. She said he may well have looked at the MRI results on his desk now, but that 'things had been moved around on his desk' and that she had reprinted my report for him. I have no idea what that means from their point of view. It means, from my point of view, that the pain clinic appointment this week is going to be a waste of time as they have already said they are not prepared to do anything much until they/I know whether neurosurgery route has run it's course. It's been over 6 weeks. I just can't believe that it's ok to just let me be like this. And, it seems, this is pretty much a year since I was last saying this when they eventually put me on a waiting list to see neurosurgeon and I waited something like 2 days short of the 18 fucking weeks maximum waiting time to see him.
It sort of feels like. I am managing. I am working. I am not hugely depressed, I am plodding along, so no rush. In the meantime I am trying hard to get up and get moving, exercise, get myself well, without really know why I am in this pain so without really knowing what will make it worse and what will help. I shall presume it's my disc again, but I don't really know that.
No, that's actually not good enough. If you've previously had an ok response to injections it makes no difference at all whether neurosurgery has 'run it's course'. You have severe pain, you have done every fucking thing you can, you are having more sick time, your job may be in jeopardy and they are refusing injections....no make a fuss. Cry. Sob.
This useless inability of the surgeon to read a report defies belief. You really need to get cross.
I'm cross, can you tell .
I do think gabapentin definitely helps my leg pain, I think you're considering pregablin again? Worth a try. As I said happy to send TENs if you want to try it.
I have a lovely new symptom. As well as severe back pain and left sided sciatica I have a large patch like a scald on my right thigh. Happy days.
matilda x-posts. Sorry you are in so much pain after your walk I hate not being able to do the things I enjoy, and your dogs are a huge part of your life aren't they?! it's just so crap that everything takes so much effort.
I am cross. I am tearful. I am just feeling so out of control. I don't really know what else I can do. So, yes, I shall cry. But, I don't even know if this appt will give me what I want as don't actually know why I have it. Presuming it's the nurse practitioner appointment as that was discussed, and it can't be the hydrotherapy appointment as that has not come through.
If they had dealt with this when it first started to be a problem, I am sure it could have been nipped in the bud, injections, other therapy, more surgery whatever it is that is needed, could have been done sooner and not waited until it has deteriorated so far it feels like the surgery was pointless. It didn't have to be pointless, as despite it not been 100% successful it did make a big difference. They have just wasted their time, my time, and all that goes with surgery. And more than that, Where before I had hope and determination, I feel like that has just gone 'puff'. I am sure it will return in coming days but right now, I feel really bloody down about it.
Do you think the tens machine will work? the pain clinic guy mentioned it last appt, maybe I can get one on wednesday, if not, I will maybe take you up on the offer of borrowing yours to see if it helps, thank you
I remember the week or so of loveliness following last injection. It last for just under two weeks, and then the leg pain only gradually returned, but I remember, I had been unable to step over this grassy bank near where I work, and had to walk around it as it hurt my leg to step up onto it. About 3-4 days post injection, I remember absentmindedly walking up to the grassy bank and sort of skipping onto and over it like I used to, stopping and going 'wow, not done that for a while!' so it did work, just not for as long as we wanted. it did however demonstrate that it was my nerve that was causing the leg pain. not that it sped things up any...
Pavlov, what a terrible accident. I can understand how your back wasn't noticed and seemed not to have happened at the time. Poor you.
I really appreciate the welcome messages from you.
Yes I am supported in RL. I've been v productive about that.
And yes, I'm toooootally freaked out - largely because I have no pain. That's apparently typical of the two types of tumour that this could be.
I'm really, reeeeeeeeally not up for an op on my sacrum and for laying down for... weeks when I've no pain. Seems bizarre. Bizarre being totally inappropriate word. Can't think. Talking about not thinking, I can't seem to remember anything so apologies if my response doesn't have your names in them. Terrible working memory at the best of times! Lol
I did download the meditation apps but need to start suing them again. I even bought the speaker head band thing! Good to be reminded.
I have been told that a disability permit for my car will be on its way within 2/3 days. Isn't that the most fabulously helpful, depressing and weird thing for someone who's just found out and has been coping. They have my recent medical report and doctor notes. I think that this must all be v serious. Sooooooo strange as I'm sitting here pain-free knowing it's all going to kick off BIg tIMe and take over my life, painfully, for a while to come.
For those few who have read my panic-posts on other threads (trying not to be alone and to find the right group for support), forgive me if I duplicate-post. I'm on cancer ones (as tumour suspected to be low grade sarcoma) and now here - as well as one I started when I had initially found out. It's hard to know which way to turn and as someone undergoing scans, MRIs etc. for cancer, with a tumour in my sacrum & spinal canal), no pain in my back, i feel like an intruder wherever I go. In fact, I cold easily imagine they'd got it wrong about being in MY back I'm so pain free (for now). I don't want the op. It'll be a painful and long journey. Even going to the loo, sitting and standing will be hard for weeks n weeks, said the nurse at pre op
goodness, you are most definitely welcome here and not an intruder. I 100% empathise with the car badge thing. I was told so many times how difficult it was to get one yada yada that I almost didn't bother. I got it extremely easily which completely freaked me. It was so obvious I was properly disabled yet I couldn't bear it being official.
So glad you have good support in RL. I think in your position joining various groups is a good idea because, as you say, you have bits of each problem. I guess the fact that you aren't in pain now is good (if all a bit adding to the weirdness).
Please don't fixate too much on the post op pain. They are good on this. If you're lucky you will be fed spoonfuls of oromorph at regular intervals. I liked(!) this more than the IV morphine pump I had first time around. I was worried that oromorph plus paracetamol wouldn't be enough but it was. Where did you decide to go in the end? Do you have a date? Sorry, too many questions.
Final addition to my list on your other thread...wet wipes! In abundance. Very handy things.
Ca you link to the other thread goodness I will go and have a nose. And agreed you are most welcome here and there are no intruders on the back story thread. If there is a problem with your back, any part, any type of problem, then this is the place for you.
I feeling better. Moving around more, but robotic as any twisting pops my back again. I am no longer tearful. Not exactly happy, morose I guess is closer to now I feel emotionally. Physically, did school run and diving lessons (dd, not me!) and am pooped but least I got there and back.
How you feeling now matilda? Better at all?
I can't seem to remember anything. I remembered one of you lovely ladies asking for the link. I'll now go back and see what else you asked.
I've taken notes. Lol
I'll try to respond to all. I can't remember who asked what. Here goes and thank you for caring and showing you're there for me.
Disabled badge. Lady called to ask whether I was currently on pain relief. Answer: no
Burst out crying as had done school run, called 4 medics (2 secretaries, urinary place and insurance co.) already that morning - and it wasn't yet 11am. She said... Don't worry, I'm giving you the badge. I'm sending it out marked as urgent. It'll be with you within two days.
Interlude: crap. Hubby is in India and texted to say goodnight I love you. Shit I need him here at the mo. He will back Friday morning, please gd. Just days before the op when all will change and it feels like my problems will begin. I'm about to be transported into a world I don't even cTe to read about as IT SCARES ME. I can sympathise and help others but I can't live it. It's such a shock and I feel like I'm voluntarily going towards something I can't relate to. I have no pain! Can't be me!
Back to my responses...
Was going to say I feel overwhelmed and weirded out by reality. Think I've covered that. Lol
Feel so scared at times that I think I'll throw up.
Someone ever so kind told me to think positive, it will be alright. Wanted to punch her and get her to promise me.
Op date is next Tuesday. Next Tuesday!!!!! At RNOH. I chose two surgeons so that I have it there vs Wellington. But went for urinary consultation on Saturday. She said to go back to one surgeon I have most faith in (as does she cos works w him and knows he's done this before) and share my concerns. Going Wednesday at 8.15am
Having jap water torture and dentist appointment tomorrow. Niiiice
Now don't know whether to have just him at Wellington or him with tumour man without spine experience but linked to RNOH and sarcoma service.
I don't even like to choose which holiday we go on for fear of choosing the wrong one and having a bad experience... let alone a surgeon
God how tough. I don't know how you can be expected to make such a terrible decision. How can you possibly know?
I hope you are allowing yourself plenty of treats. Wine? Massage? Facial? Cashmere? Chocolate? They all help me.
pavlov, thanks for asking. I've felt as though I've been hit by a cricket bat all day plus vile leg pain. I thank my lucky stars my boys are grown up and I no longer work. Also for strong drugs.
PIP form gone by recorded delivery. Yay! Any ideas as to whether they have any timescales. My life is spent being patient.
Hope you are feeling slightly better. Sometimes it does just really, really get you down. I'm sorry others are suffering too but it does help to chat and moan to those who understand..
Sorry to hear you guys are all having so much pain and difficulties at the moment. Keep strong and go steady. thanks for all your advice. will write more tomorrow.
Had a lovely evening out for coffee. Had sent her an email of what was going on so we hardly needed to talk about anything. Was so wonderfully ... normal!
Going with my mum
Have the hairiest lower body known to man. Having myself waxed pre-op on Sunday. Didn't know I'd be having diagnostic humiliation tests today. Just adds to the joy!
Hi everyone. Sorry for any that are still in lots of pain and hello Goodness. I'm so sorry you find yourself in this situation and in what seems like diagnostic no mans land. Hope the dentist isn't too grim today.
Matilda well done on sending the forms in, hopefully they'll get their bums in gear and get you sorted quickly.
pavlov sorry you've had a pants time recently, but glad the pains easing up again. Regarding test results, I rang my consultants secretary 4 weeks after my 2nd MRI after hearing nothing to be told it takes 3 months to get results. "But" says I "There are posters in the MRI suite saying I should have results in 2 weeks." "Oh yes" was the response, "That's all very well for them to say." Er well yeah, what with them being the ones responsible for it! What she actually meant was my consultant was a) part time and b) always on holiday and so was massively behind. In the end it was over 4 months before I heard and this was by letter. It basically said he had read the radiologists report, disagreed with him on a point about the damage in my neck, but couldn't do anything about it or any of my pain and too try pain management. Helpful!
I'm just about too surrender and am going to make an appointment with my GP to see if I can see anybody else. It's been a couple of years since I saw a consultant and he was an ortho, so I'm hoping there is somebody else. I would like at least to know exactly what is wrong with me as it is definitely getting worse and I'm very rapidly moving into not being able to function despite all the medication. I know it could be worse, but I'm still fed up.
Sorry for the moan.
Cosmopolitan, seeing someone else seems like the move to make.
Thank you for your good wishes.
Bloody auto correct
goodnessknows you sound incredibly well balanced and logical about all this, despite you saying you feel otherwise, given the circumstances.
You mentioned in your other thread that the aching is bothering you. Is it starting to cause pain rather than ache? paracetamol and low level codeine is fabulous for low level pain that needs just a little more than paracetamol. you can get it over the counter, but if you need stronger stuff do talk to the GP. Be sure to talk about medication relief post surgery too, before you have surgery, in case this does not get discussed in great length post surgery and before you leave. I am sure it will though. A bit tip from here, which I am still not so good with is to not be stubborn about taking pain relief, just suck it up, take it and feel better.
It's so daunting for you that they can't tell you from the MRI how much nerve is involved etc, at the very least, even if they can't tell you if it's benign for certain until post surgery and it's been tested.
Do you work? How are they? Do they even know? Glad you got to have some normality with coffee and a chat with a friend.
cowmop I definitely agree to get a second opinion. I just cannot believe how flippant they are with our lives. I know one thing though, this process I have experienced, the navigation of the NHS has helped me be more 'lean' in my own case management, I don't fob people off, if there is a problem I tell them the truth and I try really hard to not forget to do things I have promised, following up certain things. It's actually quite easy to do, a promise to check whether there is a warrant out for a £100 court fine not paid and call them back to stop them panicking is put on the back burner when someone on licence assaults his partner badly and has to be recalled. but, that person who potentially owes a fine, they are human too (you could argue they could do it themselves, but many offenders have limited capacity to manage their lives further than getting dressed and feeding themselves --sometimes not that--), or a promise to do something else important to them but trivial to me. So I have learnt from this experience.
I do get that appointments are not easily gained, but really, would it not have been better for your specialist to get you in for an appointment, or telephone you and tell you, so that you can ask questions about what that even means that he disagrees. I am fully expecting to be given a similar letter, and I will ask my GP to arrange another MRI, or to refer me to another surgeon for second opinion. My arrogant surgeon won't like that, but tough, it's not his life, it's mine that is held in the air right now.
matilda is it done?! Have you sent it?! I am loathed to tell you how long it took to assess my claim
6 months but, they did need to write to a million people, they got copies of my MRI, wrote to my GP, the physio, a different physio, and it was the physio response that took so long and held it up. If you have much of that info, hopefully they won't need to do so much chasing, but I would not expect anything back other than an acknowledgement letter for a couple of months.
pavlov your story of how your back was injured is very interesting, but awful. Not surprising the back injury was missed, but all the problems it has led to are dreadful. I really get what you are saying about needing to advocate for yourself if you feel your medical care is not sufficient, because it is just a job to the doctors, but to us it is our lives being changed so much by what simple things we can and can't do and being in so much pain.
Funnily enough my dog has had an MRI scan! She had a spinal problem something like a stroke where a tiny clot damages the spinal cord internally. We now joke that we all have bad backs in my family, even the dog. Results from her MRI were back within the week btw. It did cost £2000 luckily she was insured.
goodness glad you had a nice coffee with friends. I agree with what Pavlov said about codeine plus paracetamol being good for pain that needs something more than paracetamol on its own. Thinking of you, hope all the pre ops go ok.
live that is so bad, it's funny, about your dog getting MRI results back in a week!
My accident was so surreal it doesn't even feel so horrific. At the time, I was running a bath for the children and the glass shower screen was pushed away from the bath into the bathroom on it's bracket. DD was by the bath swirling the water, DS was next to me on the other side, sink right in front of me. I was actually weirdly pleased it all got me, as literally centimeters either way and it would have been one of the children who got it. And, DS and I were both at the same height as I was ducked down, so it would have been his face (it got me on my right side, nose and eye, so just a little further right and it would have been him) and I remember thinking that as soon as it happened. DD got a cut toe and DS refused to have a bath for a long time afterward. The damage to was not that bad, a cut by eye that needed some glue and a broken nose (which, to be fair probably only broke as it's been broken a few times before and so it weak now) and a huge lump on my head where I had actually lifted the screen off it's brackets! (I have a little dent there now) I was more worried about the blood from my nose and eye leaking onto our new carpet in the hallway as I got the children out of the bathroom!
re the damage to my back, I am not even sure I told them at A&E that I had hit my back. They didn't check it I know that, not even a glance. DH thinks I did tell them. So, although all this fuss since, I didn't actually ever add the two together. Until a MNer called dillytante said to me when I was complaining about my back problem when I was literally not able to move that she remembered me due to my thread about the bathroom incident and were they linked. I was like 'no, no, this is a disc problem' and then. Lightbulb moment! As I remembered my back being hit (I had forgotten) and then my back 'going' 10 days later and then problems ever since! I didn't know at the time that my vertebrae was misaligned. So, when the neursurgeon said to me that there was a misalignment between L5-S1 and asked if I had ever had any back trauma, I was like Yes! I know what it is! Neuro said it is not certain that is the cause, but given the exact location of the injury was between the two vertebrae, and that my spine is otherwise fine, he said it was likely. Mad eh?
It's just one of those odd curve balls life chucks at us. I do wonder if I had an MRI/x-ray at the time if it would have made any difference to now, but, I don't even know if they could/would have done anything to fix it even if they knew, as I was not in pain, could walk fine etc. I guess it would have made future diagnosis easier and maybe there would have been more urgency when my back went 10 days later to make sure there was no more damage, but, hindsight is a wonderful thing, and I have to just get on with it as it is now.
It just shows you why the MRI is slow, eg the consultant. I know they don't have to be so careful with a dog, but it is exactly the same scan after all.
I have a friend who had a cat who needed an MRI and she had to take her to our local private hospital in the middle of the night! So if you find a few stray hairs in the scanner don't be surprised!.
I'm feeling a bit better today so determined not to 'overdo' it and get back to yesterday's car crash of a day.
pavlov, that sounds horrific. Thank god the dc weren't hurt. It does sound like the start of it all. As to whether they would have done anything, who knows? When you look back on things there are always moments that you can identify as red flags. My SIL is recovering from a disc prolapse and actually improving but isn't really listening to me about taking time to recover, do exercises, graded mobilisation. No, she just wants to get back to work. In fact she's been working from home and not actually off sick. She looks really ill..
goodness, good luck with the dentist and waxing, it shows you must have a high tolerance to pain..
cowmop, def get another opinion. Make a fuss. All this waiting is a farce. four months to get a consultant to read a scan report?!! Shocking.
For all those having difficulty with this stuff it as really worth while contacting PALS at the hospital. They can be extremely helpful in chasing things up and getting things moving. They do carry clout. You can just phone and explain your pain and frustration.
Have a good day.
Pavlov, your story got me thinking. I have had two significant injuries to my lower back that have made walking difficult for several days. On neither occasion was I x-rayed or really looked at. I know one of the vertbrae (L5 I think) is out of line (pushed forwards). I don't think they had MRIs back then (15 - 20 years ago). Glad you are a tiny bit better. Hope the specialist can help soon,- preferably today. Matilda, woo hoo at getting your PIP form off. Now it just needs a sensible decision maker to read it.
Goodness, have followed your other thread, so just wishing you luck. I hope it all works out better than you could have hoped for. RNOH is less than an hour from my home (DH used to go there- and disabled ds sometimes attends the sports base there) so if you need anything---) I can't imagine how hard it must be having your dh away just now. Waiting is so difficult.
As far as in hospital is concerned, agree make sure you have some wipes and tissues, phone charger,- I found lip salve and a small tube of hand/body/face cream useful as my skin got dry.
((Hug)) and best wishes.
It's funny to think, isn't it, that incidents seemingly unrelated can actually be the cause of future issues?
I have attempted to get on top of the washing as we appear to be drowning in clean washing to be put away, and dirty washing to be washed. I thought 'just one task today, get myself moving, I will wash and dry and put away some clothes. BUT, it meant, clearing out the spare room which is now our laundry room, but has become storage for every bit of crap we move from everywhere else. So I can't get to the dryer without climbing over stuff, and so I wasn't doing drying. This means first thing I had to was clear it out. And discovered that one of my cats had taken a shit. I found this out by reaching to pick up a sock, and put my hand in it, hidden under my sock Ewwww! on the one hand, thankfully fresh so not been there forever
slattern on the other -now minging hand-- fresh is not always good . So, cleared the room, hoovered it, gave DH a pile of things to take to the charity shop i expect that will mean the tip as that's on route to DSs pre-school. I finally got around to sorting the washing, realised that half the children's clothes don't fit, so emptied their drawers out to sort out. Can you see how this is going?
Now. My house is like a washer woman's house. Clothes strewn everywhere, and our stairs are packed with stuff for attic now too. And I have had to stop as my back and leg was going 'waaaaah!' at me. Right into my bloody hip. Oops. But. At least I can get to the dryer I am going to have to sort it. As it really does actually look worse than when I started.
I am sad, DD is staying at her friends, for a sleepover. I am going to miss her. She is going straight from school and will be gone til tomorrow after school but, I am also happy, as DH collected DS early from pre-school, he is now with me, and DH took the car to work. I don't have to go anywhere! I am still in my lounge trousers and scruffy top, and don't have to haul my ass out.
goodness agree with wipes, hand gel, and maybe some roll on deodorant. definitely definitely take your phone charger. I didn't think I would use my phone, but I used it loads!
Helpful tips v gratefully appreciated. Dare I ask why I'll need wipes n hand sanitiser?
I'm almost at breaking point. My high functioning autistic son is being a flicking niiiiiightmare. Just scratched my au pair - 17th I've had in 3 years! What if she leaves? I'm all over the place. I've calked patents and told him that if he's naughty he'll go there. I can't afford for her to leave and everything to go tits up. My three year old is a doddle but how the fuck am I going to run around chasing him up n down the stairs when I'm on my flicking back?
Doesn't he KNOW (he's 6 - being sarcastic) that I'm going through so much stress and neeeeed him to b good. I understand he's sensitive etc and this is a normal (for SEN and other children) reaction, but all the same...
Just seen through the mist enough to selfishly search out my bane and thank you so very much for your messages.
I'm in such a rush of emotion I can barely focus on anything but my desperate attempts it clutch onto virtual (and RL) hands. You're literally keeping me from drowning in a black hole. I do feel bad and apologise for not being able to read and resound to you all about YOUR stuff though. In time... I hope.
I am belligerently anti pano kickers or even paracetamol, having had addiction issues. It's scary for me.
Oh goodness, no wonder you're at breaking point. I'm wondering(sure you have done this) if school or autistic charity would be able to advise. Of course he's going to sense that change is occurring and kicking off. Does your au pair get it? Also do you like/trust her? If so would it be worth offering her a bonus if she sticks with you through this?
If he has SEN is it worth asking for some respite hours for a few weeks?
Not sure quite what the stance is on people with previous addiction issues. You are going to need analgesia. Taking too little will greatly impede your progress because it will be too sore to get moving. Can you meet the anaesthetist to discuss this? Have you told them?
What a stupid lot of questions, please don't answer, I'm just throwing suggestions.
They do say that if you need painkillers you don't get addicted. I've had to take so much for so long it's hard to tell but I don't crave my meds. I can forget until the pain kicks in and I reckon I do have that tendency IYKWIM.
Really, really hope you can breathe, let go a little and find a little calm.
Wet wipes are ace for everything in hospital...hands, quick do under the arms, table, face...well everything! Gel,ummm, good for offering to everyone who comes near you. No harm in letting everyone know that you are infection risk adverse.
Earplugs might be useful, too. Noisy places sometimes. Nice pants. No need to let standards slip..
Hope you get some sleep. Sometimes it helps to write down all these worries before you settle down.x
pavlov, glad to hear you are resting quietly!
His second of twi (I think) assessments is Monday - the DAY before my op.! So I'll be waiting for two major 'results' the following week... His diagnosis and my tumour 'ID'.
Wipes: gotcha. Will buy lots!
Can't remember other questions. Lol
No SEN privision as not yet diagnosed.
How will I put knickers on if I'm having a tumour removed from my sacrum? How wil I bend or brung feet up to put them on? What should I wear after op? Nighties? PJs? Then... baggy, long dresses?
Someone asked about work. I work fir myself and from home in my dining room. I sit or stand (tutor& assessor)... pre op looked at me as if I were crazy when I said I'd told the parents I'd be taking 2-3 weeks off. Apparently I'll be laying on my side (wtf) and will have to build up to standing and to sitting.
Meeting surgeon for pre op consultation (panic question firing) at 8.30am this morning.
Really feel I need someone to take over the decision I need to make (which surgeon/a and where). How the hell should I know?
That man should never have sat in traffic blocking the hospital entrance. I may have... exploded a little bit.
Thinking of you right now.
In hospital I wore longish t shirt nighties (ie very safely covering my bottom!). I honestly did buy new pants...not because my normal ones were horrid, I just thought it would be a little bit of niceness. Ditto lovely Orla Keirly handcream. Just stuff that will give you a nice sensory moment.
Once home just soft clothes so leggings with tunic, long jumpers etc. I avoided things with a stiff waistband like jeans.
Hope your appt goes well.
goodness hope your appt goes well. Matilda has some good advice. I agree with contacting autism charity if you haven't already for some advice on whether you can get any extra help with your Ds while you are recouperating. Sounds like you may be able to pay for something? But its finding someone to help quickly that may be a problem, I don't know but they might be able to help you with that. But don't feel you have to sort everything out alone. I know your dh is unfortunately away right now, but he will be there as will your parents and they can do things as they crop up, so you don't need to get everything sorted in advance, your DH must be quite an able person if he gets sent off to India by his work and even if he doesn't do the household/childcare tasks normally I am sure he will cope admirably when he needs to. Don't worry about getting everything on your lists done, if you forget anything someone can get it for you.
I was really meaning to get advice for helping your ds cope with the changes that are happening soon. A friend of mine had fantastic help from Young Minds re her AS son's behaviour. She called them and they called her back for a whole hour with a psychologist specialist. Anyway might be worth trying although you don't have much spare time, I'm guessing?
I think respite would be SS and slow to happen.
How was the appt? Hope you got some answers.x
goodness, I hope the appointment today went ok and you have got some of the answers
I suggested wipes ( I was on a respiratory HD ward- emergency admission so no time to prepare) because when you are attached to machinery or drips you can't pop to the sink to wash. Eating in bed can be messier than at a table.
I got some help (direct payments for respite/childcare) from social services disabled childrens team,(Ds now 14 has ASD,ADHD and SLD) but it did not really start till a year after I came out of hospital (not back related). Ds struggled when I changed ( poor attention, slow) and because he wanted things the way they were he was very distressed and tried to force things back to normal which made life very difficult for us all. He understands better now.
You have some time to prepare your son. My son can only understand and empathise from his own perspective, he can empathise with the sore tummy or bruised knee