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The Back Story

(1000 Posts)
Matildathecat Thu 03-Oct-13 16:02:03

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)

LittleMissWise Thu 03-Oct-13 16:15:56

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.

PavlovtheCat Thu 03-Oct-13 16:34:22

<waves>

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.

Matildathecat Thu 03-Oct-13 19:31:55

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.

PavlovtheCat Thu 03-Oct-13 21:03:32

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 grin. 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!

LittleMissWise Sun 06-Oct-13 10:31:46

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 sad 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.

Matildathecat Sun 06-Oct-13 13:14:15

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!

Scarletohello Mon 07-Oct-13 15:44:08

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.

Perihelion Mon 07-Oct-13 23:53:00

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.

Matildathecat Tue 08-Oct-13 13:13:48

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.

PavlovtheCat Thu 10-Oct-13 09:20:32

Hi everyone.

matilda how did the pain management session go? Good to hear some new options might be available but shock 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 blush Things are slowly starting to decline here pain wise though sad. 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.

PavlovtheCat Thu 10-Oct-13 09:23:16

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 wink

Matildathecat Thu 10-Oct-13 13:48:53

pavlov I'm trying again. They are Fly London!

www.office.co.uk/view/product/office_catalog/2,17/1471402472050

Also got

www.office.co.uk/view/product/office_catalog/2,30/4725991066050

Which I love, and...yes I did go mad...

https://www.johnlewis.com/myjohnlewis/order-details?orderNumber=38143481&year=2013

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.

Matildathecat Thu 10-Oct-13 14:00:26

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.

SoupDragon Thu 10-Oct-13 14:15:51

first link

SEcond link

I"m just being nosey smile My back problems (caused by fairly minor scoliosis) are not as bad as yours. Thankfully mine get sorted by an osteopath - I just need to rediscover my core muscles in order to keep everything in place once it's been put back!

Matildathecat Thu 10-Oct-13 14:33:15

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.

PavlovtheCat Thu 10-Oct-13 18:49:47

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.

PavlovtheCat Thu 10-Oct-13 18:50:46

And yes to Pilates, body balance, yoga, etc for core muscles...

SoupDragon Thu 10-Oct-13 19:05:38

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 smile 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. hmm

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.

smile

PavlovtheCat Thu 10-Oct-13 19:59:22

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.

PavlovtheCat Thu 10-Oct-13 20:46:26

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.

PavlovtheCat Thu 10-Oct-13 20:55:13
PavlovtheCat Thu 10-Oct-13 20:56:11
Matildathecat Thu 10-Oct-13 21:34:54

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.

PavlovtheCat Sun 13-Oct-13 22:21:08

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 grin

Matildathecat Mon 14-Oct-13 10:26:34

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.

PavlovtheCat Mon 14-Oct-13 20:58:15

matilda i love that, buying three grin Will you return them wink

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? grin 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 grin)

Matildathecat Tue 15-Oct-13 15:06:38

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.

PavlovtheCat Tue 15-Oct-13 20:11:35

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!

mouldyironingboard Wed 16-Oct-13 19:02:17

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?' smile

PavlovtheCat Wed 16-Oct-13 20:14:06

grin at 'ass' on your lower back, bet that confused him grin

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 sad) 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?

<waves hello>
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 confused but if it could help I'm up for it.
Any experiences?

mouldyironingboard Wed 16-Oct-13 21:39:10

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.

mouldyironingboard Thu 17-Oct-13 09:56:18

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.

PavlovtheCat Thu 17-Oct-13 11:30:40

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 wink

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!

Matildathecat Thu 17-Oct-13 15:47:02

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!!smile 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.grin.

PavlovtheCat Thu 17-Oct-13 18:03:08

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

mouldyironingboard Thu 17-Oct-13 18:29:07

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.

PavlovtheCat Thu 17-Oct-13 19:07:39

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 sad

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 injectionsgrin

PavlovtheCat Thu 17-Oct-13 19:28:28

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?

no idea.
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.

Matildathecat Thu 17-Oct-13 20:12:56

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...

Matildathecat Thu 17-Oct-13 20:14:37

badkitten, what a fab idea! Best I've heard, anyway.

I hope you can make it tomorrow matilda smile What are you hoping to see?

PavlovtheCat Thu 17-Oct-13 20:39:57

matilda oh that just sucks sad 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 grin, 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 hmm). 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!

PavlovtheCat Thu 17-Oct-13 20:44:55

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 grin 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?

PavlovtheCat Thu 17-Oct-13 20:45:58

OYBBK I like the idea of that injection just for a bit of sleep and then a cuppa after! wink

Take your own snack though. The two biscuits I was offered didn't really cut the mustard after a 12 hour fast.

Scarletohello Thu 17-Oct-13 21:00:39

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...

PavlovtheCat Thu 17-Oct-13 21:57:12

scarlettohello <waves> i like your honesty grin 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 grin

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 grin

PavlovtheCat Thu 17-Oct-13 21:57:35

and sorry to hear you have had such a long rotten time of pain sad

PavlovtheCat Thu 17-Oct-13 21:58:05

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 wink

PavlovtheCat Thu 17-Oct-13 22:25:18

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 i would

mouldyironingboard Fri 18-Oct-13 11:51:39

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!

PavlovtheCat Fri 18-Oct-13 13:24:00

mouldy real butter? shock

mouldyironingboard Fri 18-Oct-13 14:09:43

I'm not sure if it was real butter as I scoffed it so quickly. It may have been smile

wow mouldy - I'm asking to change hospitals. Its clearly inferior where I am!

I bet the pizza wouldnt make it sad the delivery person would never find the right ward - you need gps and a sherpa to find anywhere in our hospital.

Matildathecat Fri 18-Oct-13 17:52:06

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?wink

Yay for a cinema trip smile 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.

Matildathecat Fri 18-Oct-13 18:47:35

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 wink.

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???

Matildathecat Sat 19-Oct-13 14:05:28

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.sad.

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.

sad

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?!

Perihelion Sat 19-Oct-13 21:08:19

Waves to OYBBK my fave weather person smile
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.

smile 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.

PavlovtheCat Sat 19-Oct-13 22:27:58

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 grin 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 shock

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 hmm) 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 grin.

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? wink

PavlovtheCat Sat 19-Oct-13 22:31:17

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 grin

Perihelion Sat 19-Oct-13 22:39:32

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.

Perihelion Sat 19-Oct-13 22:56:06

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 grin

PavlovtheCat Sat 19-Oct-13 23:06:02

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.

Matildathecat Sun 20-Oct-13 11:38:28

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.

Scarletohello Sun 20-Oct-13 15:24:55

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)

Scarletohello Sun 20-Oct-13 15:28:33

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!

MurderOfBanshees Sun 20-Oct-13 15:36:04

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". hmm

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. sad

MurderOfBanshees Sun 20-Oct-13 15:38:13

Forgot to say, am nearly 30, so feel like it's robbed me of my 20's. sad

MurderOfBanshees Sun 20-Oct-13 15:39:26

Oh and I'm pregnant again, with SPD again. My body hates me.

Scarletohello Sun 20-Oct-13 16:45:03

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 !).

thanks to you. X

Very hard Murder sad 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?

MurderOfBanshees Sun 20-Oct-13 19:09:49

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 smile will give her a call tomorrow. It helps that she was recommended by my pain consultant.

Matildathecat Sun 20-Oct-13 21:34:10

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.

PavlovtheCat Sun 20-Oct-13 21:54:37

None of the physios I haves seen have ever given me massage sad not even the private one recently. It's probably all I need to get me back on track too wink

Perihelion Sun 20-Oct-13 23:00:16

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.

PavlovtheCat Mon 21-Oct-13 09:31:09

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!

PavlovtheCat Mon 21-Oct-13 15:46:17

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.

Matildathecat Mon 21-Oct-13 16:21:13

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.

PavlovtheCat Mon 21-Oct-13 16:51:43

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 grin 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 shock 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 grin.

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. smile

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. blush

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. grin

PavlovtheCat Tue 22-Oct-13 10:51:23

<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 grin what did he think I was going to be doing, going for a run? do some body pump ? grin

MurderOfBanshees Tue 22-Oct-13 10:56:52

"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.

Perihelion Tue 22-Oct-13 21:51:10

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? grin

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 shock. 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.

Matildathecat Tue 22-Oct-13 21:59:18

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.

MurderOfBanshees Tue 22-Oct-13 22:09:22

Good luck Matilda! Will be thinking of you

Peri No, might look in to Backcare though.

OhYouWickedWickedWitch Wed 23-Oct-13 08:57:27

I hope it goes well matilda.

PavlovtheCat Wed 23-Oct-13 09:04:52

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 blush 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.

PavlovtheCat Wed 23-Oct-13 09:05:36

Loving the halloween name OYBBK grin I should go and change mine.

OhYouWickedWickedWitch Wed 23-Oct-13 09:11:30

Go for it smile

PavlovtheCat Wed 23-Oct-13 22:52:38

Lazy me still not changed my name!

I have bought TWO pairs of boots. Fly London boots. They are fab! and an absolute bargain grin
Mes
Mol

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 blush

I have not been back to the gym, but have gone for a short walk and done my back exercises.

<stoic>

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.

OhYouWickedWickedWitch Thu 24-Oct-13 08:00:43

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.

PavlovtheCat Thu 24-Oct-13 10:55:32

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

Matildathecat Thu 24-Oct-13 11:49:15

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. smile
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 knowwink)

OhYouWickedWickedWitch Fri 25-Oct-13 20:40:43

I namechanged for the halloween comp. Once again I didnt make the short list. I'm sure I'm invisible on those threads sad

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.

OhYouWickedWickedWitch Fri 25-Oct-13 20:42:36

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.

PavlovtheCat Sat 26-Oct-13 11:34:48

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!!

OhYouWickedWickedWitch Sat 26-Oct-13 12:31:17

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 grin

TabithaMcKitten Sat 26-Oct-13 15:49:01

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.

PavlovtheCat Sat 26-Oct-13 16:00:15

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.

PavlovtheCat Sat 26-Oct-13 16:10:09

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.

Matildathecat Sat 26-Oct-13 17:57:27

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 wink. 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'.

hollyisalovelyname Tue 29-Oct-13 08:56:52

Matilda the link didn't work re the shoes you recommended. More information please- brand name etc

PavlovtheCat Tue 29-Oct-13 14:22:29

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 wink

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?

Matildathecat Tue 29-Oct-13 14:30:56

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
£130.00

All sooper dooper comfy.

ilovethewinter Tue 29-Oct-13 14:56:24

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

PavlovtheCat Tue 29-Oct-13 15:04:00

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? hmm

Matildathecat Tue 29-Oct-13 15:45:51

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 fedsad.

Bloody, bloody beaurocracy.

Right, pity fest over. Will now do forms and ironing.

Perihelion Tue 29-Oct-13 18:01:38

Fucking hell, the private route is a bit weird.....Saw neurosurgon today. ( went a day late and missed my last appointment blush ). 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.

PavlovtheCat Tue 29-Oct-13 18:10:34

peri wow that's called 'efficient' grin 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!

Perihelion Tue 29-Oct-13 19:45:47

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 hmm 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 wink

Perihelion Tue 29-Oct-13 19:46:33

DH would say that I still haven't quite mastered the butting out bit!

PavlovtheCat Tue 29-Oct-13 20:11:43

grin 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 grin

PavlovtheCat Tue 29-Oct-13 20:26:49

matildacat I'm so sorry you are feeling so low sad 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).

PavlovtheCat Tue 29-Oct-13 20:48:29

I fucking hate pain sad
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?

Matildathecat Tue 29-Oct-13 20:49:24

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.

Perihelion Wed 30-Oct-13 10:14:55

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 shock

Matildathecat Wed 30-Oct-13 11:51:02

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.

Matildathecat Wed 30-Oct-13 13:19:09

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.

Perihelion Thu 31-Oct-13 14:39:53

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.

Matildathecat Sat 02-Nov-13 13:24:39

Well, haven't had a brilliant few days. This, however, made me laugh like a drain, so sharing with you.

www.pawbonito.com/compilation-of-cats-stealing-dogs-bed/

Hope you are all feeling as good as possible.

peri, what does the phrase 'I have enough boots mean'?!

Pumpkinupthejam Sat 02-Nov-13 22:25:37

Hi all
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?

Matildathecat Sun 03-Nov-13 13:50:09

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.

Perihelion Sun 03-Nov-13 13:53:22

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.

Pumpkinupthejam Sun 03-Nov-13 18:24:30

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!

Pumpkinupthejam Sun 03-Nov-13 18:53:13

I've just looked at difference between Neuro + orthopaedic. I dont know why GP didn't refer me to a neurosurgeon hmm

Matildathecat Sun 03-Nov-13 19:38:36

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.

Pumpkinupthejam Sun 03-Nov-13 21:38:55

Thanks Matilda thanks

PavlovtheCat Mon 04-Nov-13 17:31:30

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 grin 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 hmm

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 ! wink

PavlovtheCat Mon 04-Nov-13 17:54:52

Oh, and I was particularly disappointed that he did not examine me...I had my nice pants on wink

Matildathecat Mon 04-Nov-13 18:21:06

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.

PavlovtheCat Mon 04-Nov-13 18:40:26

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 shock 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.

Pumpkinupthejam Mon 04-Nov-13 21:58:27

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 grin

PavlovtheCat Tue 05-Nov-13 06:47:41

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? grin

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!

Perihelion Tue 05-Nov-13 17:58:22

Pavlov my head's not even slightly spun from codine for years grin.

Matildathecat Tue 05-Nov-13 18:39:50

I really relate to the talking too much! Full dose of codeine and gabapentin and I can chat for England grin.

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.

Hey ho.confused

PavlovtheCat Tue 05-Nov-13 20:53:09

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 grin

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

PavlovtheCat Tue 05-Nov-13 20:53:46

pumpkin how did the GP go telephone appt go?

still here, sorry it's so shit for so many at present angry 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 etcangry only in local government.envybiscuit biscuit 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 muchwink ). I try not to dwell on the future as it's too bloody scarysad 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 ladyangry

Perihelion Thu 07-Nov-13 21:19:55

* 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?

PavlovtheCat Sat 09-Nov-13 22:46:19

<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 grin

Hope everyone else is ok.

PavlovtheCat Sat 09-Nov-13 22:47:16

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.

Yama Sat 09-Nov-13 23:09:28

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.

PavlovtheCat Sun 10-Nov-13 08:10:12

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?

Morning all smile

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.

Matildathecat Sun 10-Nov-13 11:42:46

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!!!!)

Yama Sun 10-Nov-13 11:53:18

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.

Yama Sun 10-Nov-13 12:01:50

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.

antimatter Sun 10-Nov-13 14:00:40

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 smile

Matildathecat Tue 12-Nov-13 11:39:08

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 wink.

antimatter Tue 12-Nov-13 17:31:44

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 smile ) 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
http://global.rakuten.com/en/store/nekoronta/item/psm-rp30m/

it eased neck discomfort
it is made out of memory sponge, I think I got it in Lidl about 3-4 months ago

antimatter Tue 12-Nov-13 17:36:25

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

Mabelene Tue 12-Nov-13 18:24:26

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!

Mabelene Tue 12-Nov-13 18:27:22

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!

Matildathecat Tue 12-Nov-13 18:48:22

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?

Mabelene Tue 12-Nov-13 19:05:38

I see we're about the same age Matilda, I don't have any kids, just lots of animals smile 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 thanks

antimatter Tue 12-Nov-13 19:14:15

my pillow is all soft made out of memory foam - no wood inside!
grin
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 smile)

Mabelene Tue 12-Nov-13 19:17:01

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!

antimatter Tue 12-Nov-13 21:13:40

Depends in which country you are. Some nations are more sympathetic to back pain than others smile

Yama Tue 12-Nov-13 21:20:30

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. wine

Mabelene Tue 12-Nov-13 21:54:43

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

Me too wine

Mabelene Tue 12-Nov-13 22:03:43

Ok, I think they should be visible

SconeForAStroll Tue 12-Nov-13 22:07:19

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.

antimatter Tue 12-Nov-13 22:10:49

SconeForAStroll - you aren't failing your children!
you are trying to get better and that's what's most important now

Yama Tue 12-Nov-13 22:42:51

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.

antimatter Wed 13-Nov-13 07:17:41

Mabelene
I thought of you when I saw a couple of office chairs on this page (scroll half way through the page to see them)
www.lushome.com/office-ergonomic-chair-designs-space-arrangement/14693

tweetytwat Wed 13-Nov-13 07:53:18

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 nowsad

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?

PavlovtheCat Wed 13-Nov-13 09:06:12

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.

PavlovtheCat Wed 13-Nov-13 09:08:28

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!

Matildathecat Wed 13-Nov-13 09:16:46

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.

tweetytwat Wed 13-Nov-13 09:19:50

I really don't want back pain on my GP record though sad 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 grin 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 confused

Matildathecat Wed 13-Nov-13 09:37:31

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?

antimatter Wed 13-Nov-13 10:11:26

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:
www.imogenragone.com/lying-down-for-back-pain-relief/

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:
backandneck.about.com/od/backpainandsleep/ig/Finding-Comfortable-Positions/Hip--Spine-and-Neck-Support.htm

Mabelene Wed 13-Nov-13 11:23:34

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 smile 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 smile

SconeForAStroll Wed 13-Nov-13 11:30:53

I got a glass of water from the tap. Living on the edge that's me. hmm

I would go to the doctors as well tweety but if you are in or near South Warwickshire I can recommend my osteopath.

SconeForAStroll Wed 13-Nov-13 11:32:06

mabelene shock bloody hell!

Mabelene Wed 13-Nov-13 11:44:18

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

Matildathecat Wed 13-Nov-13 13:22:52

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?

PavlovtheCat Wed 13-Nov-13 19:50:03

wow! you lot have been nattering a lot grin

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 grin

Yama Wed 13-Nov-13 19:56:00

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.

Matildathecat Wed 13-Nov-13 19:56:02

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.

antimatter Wed 13-Nov-13 20:35:02

I know some osteopaths are terrible, but with acute pain as tweetytwat is one I visit would just massage and help to relax muscles

tweetytwat Wed 13-Nov-13 22:03:55

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 wink for last few years before the children so not done hands-on nursing for a while.

PavlovtheCat Fri 15-Nov-13 08:29:17

matilda I am heading down now, the removal truck will arrive at the weekend wink 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.

antimatter Fri 15-Nov-13 09:04:05

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

SconeForAStroll Fri 15-Nov-13 09:44:16

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 wink

Is there anyway of getting your hours sorted?

PavlovtheCat Fri 15-Nov-13 10:12:44

scone yes re working hours, as of yesterday - Working to Rule grin (industrial action). Well, apart from today where I am changing how I work, but still only my hours grin 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 grin

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 grin 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...

Matildathecat Fri 15-Nov-13 14:26:24

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

www.imogenragone.com/self-help/constructive-rest/

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 wink. 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.hmm

PavlovtheCat Sat 16-Nov-13 10:05:35

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 wink). 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 blush, none of that probably makes sense to any of you !

sounds fairly typical to me Pavlovsad

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...envy

Matildathecat Sat 16-Nov-13 11:57:00

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.

PavlovtheCat Sat 16-Nov-13 14:45:04

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 sad

PavlovtheCat Sat 16-Nov-13 14:47:32

I bet you can't understand that post though, given the horrendous typos! Got to love a tablet for changing things incorrectly!

Matildathecat Sat 16-Nov-13 17:52:02

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..

PavlovtheCat Sun 17-Nov-13 22:00:05

He did too matilda I put my feet up when he got home grin

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 wink. 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 sad. 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 sad

Yama Thu 21-Nov-13 21:05:48

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. shock shock

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. smile

Matildathecat Wed 27-Nov-13 12:17:35

Hello all,

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.

Matildathecat Wed 27-Nov-13 19:52:21

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.

antimatter Wed 27-Nov-13 21:21:22

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.

Loueytb3 Wed 27-Nov-13 21:49:33

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!

magso Wed 27-Nov-13 21:56:00

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)

magso Wed 27-Nov-13 22:09:37

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!!

Loueytb3 Wed 27-Nov-13 22:26:39

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.

magso Wed 27-Nov-13 22:45:28

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!

SconeForAStroll Thu 28-Nov-13 15:47:59

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." hmm

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>

PavlovtheCat Fri 29-Nov-13 09:05:00

<waves> just marking my place as i lost you. I will come back and say hi properly later.

PavlovtheCat Fri 29-Nov-13 13:26:35

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?

PavlovtheCat Fri 29-Nov-13 13:31:15

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.

PavlovtheCat Fri 29-Nov-13 13:37:55

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.

PavlovtheCat Fri 29-Nov-13 13:39:57

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.

revivingshower Sat 30-Nov-13 16:06:59

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.

SoupDragon Sat 30-Nov-13 16:14:26

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!

Matildathecat Sat 30-Nov-13 19:37:33

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!)

revivingshower Sat 30-Nov-13 21:26:46

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.

PavlovtheCat Sun 01-Dec-13 10:03:26

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 blush 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.

PavlovtheCat Sun 01-Dec-13 10:10:58

Wow long. Not even taken tramadol wink

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 grin

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.

PavlovtheCat Sun 01-Dec-13 10:13:38

reviving meant to say also. We are rattling medicine cabinets here wink 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.

Matildathecat Sun 01-Dec-13 11:24:00

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.

revivingshower Sun 01-Dec-13 14:30:31

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.

revivingshower Sun 01-Dec-13 14:36:19

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.

revivingshower Sun 01-Dec-13 14:37:30

Wish I could have gas and air like when I had dd lol.

SoupDragon Sun 01-Dec-13 14:41:35

Pavlov Hope it helps with the sneezing - it was a revelation to me. No more having to hold onto something and bend my knees

antimatter Sun 01-Dec-13 15:10:04

revivingshower - you must go to hospital as soon as you experience any of those:
www.patient.co.uk/doctor/cauda-equina-syndrome

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

PavlovtheCat Sun 01-Dec-13 19:29:00

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 wink, 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?

SconeForAStroll Sun 01-Dec-13 21:17:50

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?

PavlovtheCat Sun 01-Dec-13 21:29:20

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 sad

Matildathecat Sun 01-Dec-13 21:51:14

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.

revivingshower Mon 02-Dec-13 10:37:37

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.

magso Mon 02-Dec-13 13:31:51

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.

SoupDragon Mon 02-Dec-13 14:02:58

My pleasure. smile I have been sweeping dusty corners so have been hugging myself a lot today!

revivingshower Mon 02-Dec-13 14:14:19

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.

antimatter Mon 02-Dec-13 14:45:52

revivingshower - cou,d you look for an osteopath for home visit?

Matildathecat Mon 02-Dec-13 17:09:28

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

http://www.thestudentphysicaltherapist.com/slump-test.html

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!

Matildathecat Mon 02-Dec-13 17:10:27
revivingshower Mon 02-Dec-13 18:46:40

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.

PavlovtheCat Mon 02-Dec-13 20:12:22

reviving glad the GP came out. And, you say don't take all those at once. I have done that on many occasions blush 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 grin 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 grin grin

revivingshower Mon 02-Dec-13 20:42:35

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.

PavlovtheCat Mon 02-Dec-13 20:53:08

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 grin

revivingshower Mon 02-Dec-13 21:05:14

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.

PavlovtheCat Mon 02-Dec-13 21:17:48

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 wink 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 grin

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.

OhYouMerryLittleKitten Mon 02-Dec-13 21:36:20

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?

PavlovtheCat Mon 02-Dec-13 22:06:19

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.

SconeForAStroll Tue 03-Dec-13 07:18:56

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. sad

OhYouMerryLittleKitten Tue 03-Dec-13 12:59:08

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.

magso Tue 03-Dec-13 13:25:27

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.

OhYouMerryLittleKitten Tue 03-Dec-13 13:54:55

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.

revivingshower Tue 03-Dec-13 21:44:48

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.

OhYouMerryLittleKitten Tue 03-Dec-13 21:51:18

Have ou got into a routine as to which drugs to take when?

revivingshower Tue 03-Dec-13 21:57:58

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.

OhYouMerryLittleKitten Wed 04-Dec-13 08:13:22

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.

PavlovtheCat Wed 04-Dec-13 08:45:41

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 sad 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?

Matildathecat Wed 04-Dec-13 09:36:45

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.

revivingshower Wed 04-Dec-13 10:41:05

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.

Matildathecat Wed 04-Dec-13 11:47:14

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.

OhYouMerryLittleKitten Wed 04-Dec-13 11:54:48

thats worth knowing. Branded ones are too expensive to use regularly.

magso Wed 04-Dec-13 13:51:47

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.

PavlovtheCat Wed 04-Dec-13 17:07:23

Stick on heat patches? What? Ones that you can wear as you go along? shock 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!

SconeForAStroll Wed 04-Dec-13 19:37:39

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 grin) 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!

PavlovtheCat Wed 04-Dec-13 19:41:58

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.

PavlovtheCat Wed 04-Dec-13 19:47:34

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 wink). 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!

PavlovtheCat Wed 04-Dec-13 19:50:01

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.

revivingshower Wed 04-Dec-13 19:52:20

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.

PavlovtheCat Wed 04-Dec-13 19:54:34

oh do you have a link to one? i cant beleive i never heard of them!

PavlovtheCat Wed 04-Dec-13 19:55:45

oh i just googled, do you mean like the deepheat patches? they work?

SconeForAStroll Wed 04-Dec-13 20:03:42

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!

revivingshower Wed 04-Dec-13 20:04:29

This is the one I have curaheat pad but I think the other kinds are similar

Matildathecat Thu 05-Dec-13 11:32:59

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 wink.

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

www.lidl.co.uk/cps/rde/SID-A10DC7C1-4C91DF1E/www_lidl_uk/hs.xsl/our-offers-2491.htm?action=showDetail&id=7996

revivingshower Thu 05-Dec-13 11:38:38

I know I sound thick but how would you use that pillow?

Matildathecat Thu 05-Dec-13 11:47:59
revivingshower Thu 05-Dec-13 11:52:41

Thanks! The lidl one is a great price!

Matildathecat Thu 05-Dec-13 16:40:53

Just been in, cushion not available until Monday. Will report back.

PavlovtheCat Thu 05-Dec-13 16:56:44

Omg I want that pillow. Now! <sending DH right now>

Matildathecat Thu 05-Dec-13 17:03:46

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...

PavlovtheCat Thu 05-Dec-13 17:14:14

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

Matildathecat Thu 05-Dec-13 17:53:43

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-.

magso Thu 05-Dec-13 19:50:20

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.

ameet1983 Thu 05-Dec-13 21:17:08

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

Matildathecat Thu 05-Dec-13 22:05:50

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 thoughwink

revivingshower Fri 06-Dec-13 10:14:48

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.

mouldyironingboard Fri 06-Dec-13 12:23:14

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?

mouldyironingboard Fri 06-Dec-13 12:51:19

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.

revivingshower Fri 06-Dec-13 13:08:22

Thanks mouldy I will try it. Sounds a bit yuck tho lol x

mouldyironingboard Fri 06-Dec-13 15:27:46

Reviving, it tastes better than fibogel (which is what your doctor may suggest).

PavlovtheCat Fri 06-Dec-13 17:05:58

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 shock I thought I was going to die. No shit (excuse the pun) grin It was quite unpleasant. So, do work on that now.

PavlovtheCat Fri 06-Dec-13 17:06:22

ameet - what did I miss? was it someone selling something? was it someone being rude?

Matildathecat Fri 06-Dec-13 18:06:43

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.

revivingshower Fri 06-Dec-13 18:53:31

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.

revivingshower Sun 08-Dec-13 00:17:36

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.

PavlovtheCat Sun 08-Dec-13 09:29:35

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 grin

Some bastard rang our door bell at 5am! shock 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 grin

PavlovtheCat Sun 08-Dec-13 09:30:55

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.

Matildathecat Sun 08-Dec-13 19:31:40

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

Xmas2013SantaA6249 Sun 08-Dec-13 19:54:00

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 grin

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 grin 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.

Matildathecat Sun 08-Dec-13 20:25:30

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.

PavlovtheCat Sun 08-Dec-13 21:26:05

blush sorry that last post from Xmas was me blush 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 grin 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 grin

magso Sun 08-Dec-13 22:08:48

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!

Matildathecat Sun 08-Dec-13 22:20:38

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.

revivingshower Sun 08-Dec-13 22:22:38

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