Mumsnet has not checked the qualifications of anyone posting here. If you have any medical concerns we suggest you consult your GP.
back has gone again, not holding down meds. Hospital?(117 Posts)
hello. Despite the wonderful post that has led to lots of thread and posts and visits to my blog abou dillytantes amazing memory helping my back issue, I am sad to say that it has 'gone' again.
I need some advice. I am in a lot of pain. It has been threatening to go badly since the weekend, sort of did on sunday then was ok, but at the same time on sunday I started to throw up and have hardly stopped since.
I have not taken my tramadol since tuesday (so add a bit of withdrawal into the mix). I managed to hold down some water last night, so tried some rice cracker this morning, followed by a slow release tramadol and two paracetamol. They came straight back up.
Now, I always said that when it goes again like this I would be up at A&E not the docs as they just send me away again. But, now it has come to it, I am not sure. Added to the fact I am not able to take any pain relief has me thinking I should go. I have a GP appt at 10:40am but can't see what they will do. I am not sure I can even make it as I can't walk. I can have telephone appt but that is 11:30am onwards, could be as late as 2pm. That means if I am not happy, or if they suggest hospital, it coincides with DH getting the children. GP is unlikely to do anything I am sure.
I am ok if I am still. (But, clucking means I am fidgeting ). I am holding down a little water now.
WWYD? I am thinking if I get into hospital the very least they will do is get some fluid and some medicine in me before kicking me out? But, I have been here before and did not go to hospital, I feel a bit like a fraud.
ok, so I am not dehydrated, as I need a wee. I can't get out of bed. DH has given me my mobile phone and has his on him so I can call him from upstairs!
How bad is that!
You poor thing. Surely you need a strong anti-inflammatory? Tramadol's just for pain. Is your back spasming? A good anti-inflammatory can stop that and give you time to get moving again. Can't remember the one I used to take, but you can only get it on prescription. Saved me many a time though.
Why are you throwing up, do you know?? If you can't get to the GP, do the phone call. If that's a waste of time, go to A&E. You're not a fraud, you need help.
Oh you poor thing- I have read your story. I have similar back issues, so you have my full sympathy.
Last time mine really 'went' I ended up with an ambulance here, as I literally could not move at all.
At hospital, I was given a pain-relief drip and a pain-killing pessary. So I would say that you need more intensive relief -I would recommend hospital. Could you get sent there via 111? That's what happened to me- the operator could hear me screaming in pain every time I tried to move.
When the worst is over, ask your GP about morphine patches. I had them for a month or so after my last episode and the provide continual pain -relief, so you don't get to the point where it's unbearable. They have to be short-term though, as they are addictive.
Good luck, hope you get sorted, I know how horrendous back pain is.
Get to A&E if you can, as Smee has said, it sounds like your back is in spasm, and you need a relaxnt to sort that. I know it will cause you extreme pain to get there but once they give you the right meds, the relief is immense
smee I usually take diclofenac, but as I am being sick and can't keep anything down, I can't take it, as even if it does stay down it will be on a very very empty stomach. I do have omeprazole to take with it, but I need to eat first.
I have a theory about the sickness, which is usually poo-poo'd. But, every time my back 'goes' for a short while before I feel a little unwell and then throw up. I have a theory that it is related to gunk leaking from the torn lumbar disc, and my body reacting to this 'toxin' in it's body, and then the 'toxin' triggers the muscle spams and sciatic irritation. But, hey, I am not a doctor and they really know the answer don't they? Sorry, I am grumpy.
But, this time it has just kept going and going. Can't be a bug. as everyone else is ok. I did think it was because after my back 'went' on sunday, I had eaten a little after throwing up lots so I followed my 'emergency' plan of pain meds including diclofenac and wondered if this then irritated my stomach.
DH is cooking me some porridge. I have had a (very very dark but quite long) wee so the liquid from during the night has stayed down, that is good as nothing was yesterday.
I feel like such a mess.
Diclofenac never cut it for me, Pavlov. Made me sick actually. Tramadol was a no-no for me too, as I had an allergic reaction to it.
Naproxen (anti-inflammatory) was pretty good for me. And for pain, Co-codamol. Have you tried those? Neither should be taken long-term, but they were great for sorting me out when I couldn't move. They got me mobile enough to get through it iyswim. I think pain can make you feel sick. I know it did with me. Hope the porridge stays down. x
i had napraxen for a short while was ok, then after a break, took it and was very sick on it. i have been on diclofenac since christmas, with a short break in april time. i do throw up from time to time since taking meds, never really figured out which of the meds is causing it, had thought it was the tramadol as it started around that time. maybe it's the diclofenac.
i had taken co-codemol up to 60/1000mg until aroung july/aug when gp swapped to tramadol as side effects were too much, taken it for too long. it makes me very irritable, but only if i have to function on it. if i am lying in bed in pain it works much much better than tramadol.
I have eaten a few mouthfuls of porridge. so far so good. DH said i need to eat half a bowlful before taking any more meds. although i threw up the tramadol etc i don't want to take more in case some was digested so i will take diclofenac and codeine (i have some straight codeine still).
I have cancelled gp appt and will talk to her on the phone instead at end of open surgery. if i go in i will likely have to wait for 30 mins plus to be seen, in a lot of pain, only to be told they can't do anything more.
If I am lying still, i am ok. and i can make it to the toilet, albeit on my hands and knees but nevertheless it means i can move.
so, this brown wee is worrying me. could it something to do with liver or kidney and not my back after all? oh i don't bloody know. i know that I am sneezing (apparantly a withdrawal symptom from tramadol, who'da guess that?) and it is causing my back to spasm even further each time, I am having to brace myself from the pain and the sneezing is ended pronto with a yelp.
I am speaking to the gp on the phone in 10 mins. and i have held down the porridge, not quite half a bowl though.
Just cos you are going to loo doesn't mean aren't in some way dehydrated. If you are on strong painkillers and been sick probably need more water to process it (certainly that has been my experience and advice that told to drink more to help process it).
And agree with smee that ring dr as cant carry on like this as you are suffering.
pavlov, I never managed to take anything long term. Could only manage one Co-codamol at a time and Naproxen if in dire need. Rest of the time I kept going with less brutal drugs like paracetemol and ibuprofen. I seriously think those heavy duty drugs should be avoided if you can.
Oh and should say my back was dire - no disc at base of spine, so everything rubbing together and in constant pain, couldn't sleep, etc, etc. I've had it fused now and life is so much better, so if surgery is an option, I'd take it seriously. I was a bit daunted, but it's honestly been life changing.
Hope GP is good on phone.
oh smee i wish surgery was an option. I saw someone from spinal pathway team who promised me another MRI with view to considering discectomy if leg pain/pins & needles/numbness continued (he said they were not so bothered about actual back pain) once I completed physio treatment. Done that, and my GP is stalling and won't refer me back.
I think part of that is in the back of my mind when thinking about if I should just present at A&E, let the doctors at the hospital decide if I need another MRI and then I will be back in the hospital system. I was under the impression that surgery would be very seriously considered if conservative treatment does no work after 6 weeks. Ha! It has been 10 months of serious pain, not to mention the times before that when it went badly for weeks at a time.
My l5/s1 disc is badly dehydrated and apparantly soon enough it will disappear altogether (yey! seemed to think the spinal team, nothing left to protrude), so I am guessing that is why they don't want to remove any of it, they want to wait for it to disappear on it's own, but then I get the same problem you had. That must be so so so painful having nothing holding your spine in place, rubbing together. Glad surgery has eased it somewhat, has your mobility/flexibility reduced much with the fusion?
Pavlov, push like crazy for referral back. Your GP's being useless and it makes no sense, as if you've already been seen by the Spinal Team, they shouldn't have discharged you, so you shouldn't even need another referral. My path to surgery was:-
GP - physio - Neurosurgeon & MRI - spinal block injections (all failed for me, but worth a try) - another MRI - finally surgery. All took over two years, but definitely worth it.
If your disc disintegrates then it's pure mechanics and it's a no-brainer. NHS were fab with me, but it took time and lots and lots of me being pro-active. I did things like found out the Consultant's secretary's phone number and called her to gently push appointments. Whenever you see the Consultant, ask what you can expect next/ what the likely outcome of whatever they're doing is/ what the timescale is on it all/ when your next appt will be/ can you make it now so it's in the diary, etc, etc. That way you can chase if that doesn't happen. It's amazing what a difference it makes if you say to GP/ Secretary or whoever that the Consultant told you something.
smee my route so far has been drs (a lot), referral to osteopath (mostly useless) for 1 x caudial injection (did not work) then MRI. Told the MRI showed that surgery was not viable. Cue the back going badly, referral to physio, physio calling my GP and insisting he refer to spinal pathway, spinal pathway conceding disc could have prolapsed further/another one might have gone etc, back to physio to get me straight then back to them via gp. And now I am stuck.
I don't know why the spinal pathway team discharged me. I think he thought that once I was standing straight it would all sort itself. He was also dead against spinal fusion. My local hospital doesn't do it as they don't feel it is effective enough, but they can refer onwards. This guy said that if/when my disc finally disappears, it would fuse itself together on its own, in time. He seemed to think I should wait for that to happen.
I am going to insist on a new referral today. This GP is not the one who initially referred me to spinal pathway team (albeit when physio insisted due to my pain levels), this GP has indicated I should accept pins and needles and some numb patches over spinal surgery (and a shit load of drugs).
well. the porridge has stayed down, the gp has not called. I am going to take some codeine.
and for some reason I can't get a referral to pain clinic either. This GP says, we can medicate here first, if it does not work, then pain clinic, where the spinal pathway team said, if no further action was needed from them I should go straight to pain clinic. He also told me that at the pain clinic they can give me direct injections that are more accurate than caudal injections which are hit and miss (and pointless he feels).
Why would I want to be on amitriptyline, and all the other crap I am taking when I can have a direct nerve blocker with little side effects? I stopped the amitripyline last week, not taking it anymore, I can't take the side effects. DH wonders if this is why I have been vomitting as I did not slowly come of it (only 25mg)
the spinal pathway team bloke that i saw was very clear about the two options. He said my route once finished with physio was further MRI and then depending on what that showed a) into neurosurgery team to consider surgery b) pain clinic for more direct and effect pain relief than the primary care route can offer.
I might call the consultant up at the spinal pathway team. See if they did in fact discharge me and if I can find another route.
My daughter was in tears this morning before going to school. She said 'mummy I don't want there to be such things as poorly backs, or being unwell, i don't like you being sick it makes me cry' and I said to her 'it won't be like this forever poppet, it will get better one day I promise' and she said 'it doesn't feel like it is mummy, it has been forever already'. She is 6. And has gone to school in tears because of this.
And Dh has had to take another day off work to look after me and the children as I can't do a damn thing.
And the doctor hasn't called me back.
God Pavlov, poor you. I'd ask for a second opinion, as my team told me fusion wouldn't happen on its own and the long term nerve damage of things being impinged on is a worry, let alone the on going pain. Ask to go to a big teaching hospital, they're far more up to the minute.
Or here's a thought, but you could do what I did. I was referred to a top Surgeon, but it was a 3 month wait to see him, so I found his private clinic on-line and went for a consult. Cost about £200 from memory. I took my MRI with me on a disc (hospital should let you have it if you ask). He straight away said I was urgent and took me back under his wing under NHS. If you can afford it, I'd say money well spent.
In the end, I had a relatively new op called Axialif - it's done more in the US. It's a single pin which is drilled up through the spine and sits between the bottom two vertebrae holding them steady. The bone then fuses round the pin. Less invasive than normal spinal fusion as it doesn't go through tissue, so worth a go if a) they do it and b) you're a candidate.
After two years of intense pain, tbh I can't remember if I'm less flexible than I was before. Life without all that pain though is fantastic, so who cares.
thank you so much for the advice. what i need first and foremost is another MRI. as the other one does not show evidence for surgery, I saw it and it was explained to me, there is a prolapse but not very big, and a small tear. But, that was from May and in June it went in a major way and it has been since then that I have had the serious nerve pain, even when my back has been ok. I need the new MRI so that if I am not happy I can do as you say and take it further somewhere else. The nearest hospital that does spinal surgery is a teaching hospital I think (exeter royal infirmary, will go and google).
I would happily spend £200 on a private consult.
good news: I have held down porridge, and now some bread and yucky tinned soup (well, i dipped the bread in the sauce of it). So codiene and maybe some sleep here we come!
bad news: in the 10 mins it took for me to get downstairs for my food (I wanted to try moving) and remembering that my phone was upstairs and DH went to get it, I had missed 3 calls from her as it was on vibrate. Doctors surgery is shut this afternoon for training, luckily she is on call and said I can call the emergency out of hours surgery number to talk to her.
I spoke to GP. I insisted on a referral to spinal pathway. I was in tears to be honest, i told her I simply cannot go on like this. We talked about the vomiting, she asked a few questions, luckily I have eaten something since this morning so by the time I spoke to her I was not dehydrated enough to need even more meds (anti-emetics). I told her felt that the vomitting was linked to the back problem, either due to pain, or issues with the meds and she agreed. She said now I have eaten then I need to take painkillers again.
She read through my notes from spinal pathway team, and it states clearly that if no improvement after physio for 2 months, MRI with view to surgical route is required.
She agreed this has gone on too long (but, so did her colleague months ago) and will do the referral this afternoon, and try to fast track it.
That's progress then. Just keep on at them. My GP sneakily told me crying and saying you were depressed was the best way to get bumped up the waiting lists. Hope they see you soon.
Oh Pavlov my love, I was hoping this wouldn't be you! Well done for managing to eat a little, I hope that the GP does as she says and gets you that MRI asap.
But tbh, if you haven't improved by the end of the day (or tomorrow morning at thelatest) I would go to the hospital. You can't carry on like this.
I will puddle. I had been back at work for two weeks as well. DH and I had serious discussion about hospital today, he will take me whenever I ask and has told his employers this may happen so he may not be in work on friday (took today off, not due in tomorrow, shifted fri/sat/sun). How are you my lovely? We can sort of guarantee that threads about back problems etc are going to one of a handful of us eh?! Have you had your physio? How about your MRI? feeling any better?
smee gp thinks I am depressed already. She gave me amitriptyline to help with this as well as nerve pain I am sure. She had a 'talk' with me. I am not sure if I am. Probably am and how wouldn't be? She did say she wondered if I was never discharged from the spinal pathway, even though physio team told me I would need to go back via them. She is probably going to call and I now have the name of the person I saw (i could never remember).
oh and I agree with crying helping! i found that out a few months ago when I went to see my gp after having had enough and just cried my eyes out. that got me the referral to physio. I then balled my eyes out in front of the physio, then her boss, then bam! referral to spinal pathway. It seems that if you appears to be coping even just a little, they will send you away. Unfortunately I have given the impression of coping just a little because I have had some nice fluffy drugs that took away my fire. I still had the frustrations, but no energy to fight it.
I spoke to the head physio on the phone, she took my history and referred me straight on to the spinal team. So at least I don't have to go through physio yet again. I have the MRI on the 24th and then an appointment with the consultant on the 17th December to discuss the scan and whether there are any treatment options that I haven't already tried.
He's a bit of an arse though - he told me last time that he was referring me for an MRI against his better judgment because after 16 years I'll always have pain so what do I want him to do about it? I was less than impressed.
How are you feeling this afternoon, did you manage to eat/sleep any more?
blimey! you get a consultant? when I had my MRI, I had an osteo call me up to tell me. admittedly he wanted to tell me they had also found out I had a mutant kidney too (seriously, they found out on the MRI i have one, enormous 'horsehoe' kidney' he was more excited by that and casually slipped into conversation that this was degenerative and I probably would never canoe again. I never got to see the MRI until I saw the spinal team in August, MRI was in May.
I am so so pleased you have the MRI and a consultant appt. I really really hope they can find a solution for you that will actually help this time. About time for you. Please keep me posted. You should come and be a guest blogger on my blog
Me...i am in a LOT of pain. i felt a bit better this afternoon and made the decision with dh not to go to hospital. i kinda regretted it this evening. I managed to have a bath, got in ok, soaked for 5 mins sat up, could not lie down but due to sickness and feeling pathetic not had a bath/shower or cleaned my teeth since sunday (probably saturday actually as i was ill sunday before i got dressed, i had mouthwashed after throwing up, and a quick swizz with a toothbrush but not a power on clean) DH bought me some nice bubble bath, after 5 mins, i had a muscle spasm and got stuck. I curled on DDs bed for story (pretend it is not as bad as it is for her type thing) and when i got up, i had to get on the floor and DH had to help me out of DDs room, while i did not cry or scream but actually needed to.
I am ok now, having taken more anti-inflammatories and codiene (stopped the tramadol when i threw up) but only ok if i don't move. at all. apart from my hands typing that is
Tomorrow, when DD is at school, if it is like this, there will be no question. I just needed to get myself un-messy from this vomitting first, see if it was not that making me feel worse.
and as smee says, if you get your mri and you are not happy with his opinion take it elsewhere. we have to fight for our corner. I never ever knew I would have to know what a neurosurgeon was in order to speak to my gp. I never considered i would need to tell my gp to refer me to one. i assumed he/she would tell me i needed to see one, and what it was. if it were not for the internet, for google and places like MN i would never have known i needed to see one or was entitled to see one, let alone ask for it/demand it. but now i know.
Oh I hate getting stuck in the bath! It happens fairly often. I had to crawl off the bed tonight after lying down to feed DS to sleep. That was fun.
I would never have thought to see a neurosurgeon either - the consultant I've been referred to is a rheumatologist. He was so dismissive last time that I think I may have a battle on my hands - after he examined me and I listed all the therapies and drugs I've tried in the past he just sort of shrugged his shoulders and said that he doubted the MRI would lead to anything that I hadn't already done.
I hope you have a better night tonight - I'm glad DH is being more supportive now. Look after yourself.
Oh and I shall go and have a nose at your blog again, I haven't been in a while!
why have you been referred to a rheumie? is he moonlighting? make sure you see the MRI when you for your consult, not just the report. I made that mistake. Even then it was the GP who showed it to me, ages afterwards, surprised I had not seen it. I did not realise I could see it.
so you have not found anything that can help for pain relief? you poor thing, it sucks.
I have no idea why, but tbh I was just grateful to see someone! I will definitely ask to see it - I studied osteology for my MSc so have an idea of what I'm looking at.
No, no pain relief, just lots of gritted teeth and sucked in breaths! I don't know what I could take though - DS is still BFing a lot (he's only 10mo) and as he's intolerant to both dairy and soya I'd rather not have to wean him yet. We'll see what the consultant suggests though (assuming he suggests anything).
jeez you really are hardcore puddle i so hope they can do something for you. I really do.
Not hardcore, just stubborn! Unfortunately mine has flared up today. It's been threatening for a few days but a brief walk around the local wetlands with the kids seems to have done for me.
How are you today Pavlov, any progress?
puddle I am joining you in stubborn. I have stopped taking tramadol I am sure I will be regretting this decision in a few days, if not before. but I have had it with meds. I am not completely cold turkey, although I stopped nerve blocker last week. I am taking codeine, which is not so difficult to reduce from as it is opioid not opioid AND serotonin fuckup. It was not entirely intentional in that I threw up for so long I was forced into not taking any, and I dread the prospect of having to do those first 3 days again of any withdrawal, this time I had sickness to somewhat mask the pain of withdrawal. If I do it again I won't. Either way. I am not doing it any more.
Can you read the signs of your back 'going' too then? I can tell for a couple of days that it going to 'go' badly. Like this week. Me and you both eh? how long is it going to lay you up for this new lapse? I am moving about now, but sciatic pain has hit me with full force (thanks to not taking the nerve blocker any more).
I just meant that it's been getting gradually worse over the last few days instead of maintaining its usual level of pain. Nothing like your sickness warnings. Have you mentioned that to anyone yet btw?
No one is interested in my far fetched ideas! I vaguely mentioned chemical pain to a physio who told me there was no such thing and to be careful what i read on the Internet...it was her boss who told me about it! (Well I already knew but most people don't seem to believe it is anything very real). I get the gradual increase too. As well as the sickness this week which might or might not be coincidental, I had first signs on Sunday, it was it going, I knew it was regardless of the vomiting.
Hope you find some respite from it this evening and get an ok nights sleep.
How frustrating! How are you today?
<waves as a fellow back pain martyr> I know it's a bit continental but can you get your pain meds prescribed as suppositories for next time this happens. In France the seem to put all their medicine up their bums, better for your stomach and (hopefully ) can't be vomited out. Sneezing is one of my worst fears so if it's a side effect of not being able to take Tramadol that's a double bastard.
<waves at puddle > I'm a non medicating person too, I do find I'm less likely to end up with big pain problems as I'm always listening to the signals I get from my back as they are not masked at all. Mind you if I could I think I'd just swim about in a bucket of Iburofen/coedine but after 20 years of abuse my stomach lining bleeds if I get too close to NSAIDs! Tramadol is great but far too much fun, I stopped after the best 24 hours of my life where I basically grinned and hugged people and said 'brilliant' a lot. Happy day but I could see that it might be a bit of a problem on a permanent basis.
lostinwales <waves> I should have asked for suppositories. Might have helped in another way too. God I wish tramadol did that to me! It mostly keeps me awake longer than I would like, slows my digestion and makes me talk FAR mor than I normally do. Which is a lot.
Right now my best friend is cleaning the kitchen after dinner, spotless so dh does not have to do snything when he gets home from work and has tidied my house to perfection. Including the war zone of dds bedroom. dd had the decency to be humble on her return from school and apologised for the mess it was in. My ds won't stop jumping on me as I lay on the sofa. I did too much today trying to 'get on with it' and spasms are back full force and ds cuddles in a unique way when he is tired, involves a lot of wriggling and jumping.
puddle felt more human today than I have all week,had a bath that I didn't get stuck in, walked around sainsburys with a crutch slowly, meant I got to spend too much money on thing I don't need. Then I got dd from school so I could talk to her teacher about how this is affecting her. Now I am on the sofa, screwed, with a good friend to look after me and having given in to the tramadol. I can't give it up, not while I am in so much psin. Stupid stupid idea. . How are you?
LostInWales that sounds fab! Unfortunately I'm really sensitive to opiates so tramadol makes me alternately projectile vomit and pass out, neither of which are helpful when you're in excruciating pain from every movement. I live in terror of sneezes too, they're so bloody painful!
Pavlov I'm actually better than I expected today, I'm upright and walking without crutches (although very slowly). This evening is proving difficult though as DS has decided that despite only having 2 half hour naps he doesn't want to sleep tonight. I've been trying to settle him since half past five... He gets hysterical if DH tries, although he happily goes to him when I need a break from the feeding/rocking/cwtching etc.
Your friend sounds fab! How are the DCs handling things?
YY to the talking more effect of Tramadol, I basically put out a stream of consciousness on a theme of the Harry Enfield character who says 'brilliant' a lot. I stopped taking it after making all my children stop what they were doing so they could listen to a continuity announcer on TV as 'I love this voice, doesn't he have a lovely voice boys? Listen, listen, this is my favourite voice on tv' I turned round to a trio of faces and realised I couldn't do that full time. I'm saving it for my old age (I plan on taking all the meds I can't now because they make me too hazy whilst using my DLA to employ an attractive young man to pour me a gin at 4pm and do the gardening with his top off, I'm quite looking forward to it actually)
What's the chemical pain thing? I can always tell when I'm going to get a bug because everything is just so much more painful about 3 days before. No one seems interested in this theory either. (Seen Rheumatologist, Orthpaedic specialist and all round back person so far).
I had an MRI last week, thoracic and lumbar vertebra, so I'm looking forward (ish!) to getting the results. I have degenerative bones though so most drs get bored of me because there are no surgical ways to help.
How do you all cope with crutches? I had them in the summer a bit but I'm never really sure how to do it and then the middle of my back hurts and I feel all self conscious.
lostinwales i will find you a link about chemical pain, can explain it so much more than me. but the theory is that the pain from the source, the chemicals it emits can cause pain as well as the local source, so for example disc pain, the assumption is nerve pain/sciatic pain is caused by the disc pinching on the nerve, but in relation to chemical pain it is also caused by the chemicals/toxins also causing the muscles and nerve to become inflamed. in relation to my experiences, I always vomit a few hours before my back 'goes' badly. Always. And my theory is to do with the disc leaking gunk and chemicals that cause my body to dislike it, throw up, followed by the inflammatory pain causing spasms and sciatic pain. I mean, it may well be that the nerve is now in fact trapped, which I think it is as I have numbness and pins/needles almost constantly down one leg, but my theory still sticks, based on common sense and things I have read. Blah. See. Tramadol speak
re crutches - if you use two, you are meant to use them like walking, so not two at a time, but instead of swinging your arms - left leg right arm, right leg left arm. Physio said that this way reduces the stress on the rest of your back and does not mess up your natural gait as much. I only use one most of the time though, as I can't use two and have a two year old with me, I use it opposite the leg that I get the most horrendous nerve pain in, it takes the wait off it, and gets me upright. I only use them sparingly and the physio said she would take them off me after a month, HA! I didn't return to give them back . Or, I stuff DS in a pushchair and use that like a zimmerframe
puddle I am glad you are feeling better, but grrr that your ds has decided not to play ball. It is so frustrating when all you want/need to do is lie down or do little and they demand you and no-one else. Glad you are able to ditch the crutches though.
My friend is awesome. I rewarded her with dinner (she cooked did most of it) and wine (she drank most of it). I rely on my friends very rarely. But, she comes over on a friday often anyway, and while I was out getting DD from school she just blitzed the place for me. She said she will come in once a week or more if needed for the time being to help keep on top of things.
Children coping? DS does not really understand. Well he does, he knows I have a poorly back and if he kisses it, it makes it better. DD, she is lost. She is upset, a bit scared I think and very sad mummy is hurting still. She does not understand why she can't fix it. She so desperately wants to. She is very empathic and seems to have a sense of responsibility for making it all ok and I think she is a bit confused why cuddles, love and fussing is not enough. She rushes to my side and helps me walk if I get a spasm, and gets upset that DH takes over even though she can't support my weight. She gets me cushions, brushes my hair, asks me constantly how I am feeling, can she help. She has left for school in tears most mornings this week due even though try to hide it from her. Which is why I spoke to her teacher. just so she has somewhere else to turn if she is worried or sad at school. My heart continually breaks for her. I have cried in front of her more times that I ever should have and feel very guilty for her having to be so involved in my condition.
Yes, I try to only use one crutch as well, I feel slightly caged when I have two. And it's hard to manage the DCs as well.
Poor DD, it must be hard for her to adjust to. My DD is only 3 and although she's always known that Mummy has a sore back she doesn't understand why I can't just have medicine or a plaster to make it better. When it's really bad I have to restrict myself to cwtching her in bed or on the sofa and reading stories or watching tv, sometimes doing craft. The trouble is she's much happier running around and I just can't join in.
It must be hard for your DD as she's older and more aware. Is there something quiet that she especially likes doing - drawing, sticking, reading etc - that you could do together while you're fairly immobile? What's she into?
Using crutches like swinging arms! Of course that makes loads of sense, because I work in our small local hospital I just got given them. I would have to say you get a heap more sympathy with them don't you, people don't really believe in back pain unless they have it themselves but the minute you have crutches you have something physical they can understand.
You still both have such little children too, that must be hard. My lower spine has only recently started to impact on day to day stuff and my youngest is 5. I can't hold other peoples babies because my thoracic spine is my worst area but at least I have been relatively good on my feet. Children by nature are still so selfish though aren't they, the amount of stuff they drop on the floor which I hurt to pick up. DS3 does come and stroke my back and say 'where do you have pain today mummy' which is sweet and heartbreaking equally. I feel bad for my eldest as he is ASD and very close to me and sometimes when I can't stop the tears flowing I can see how upset it makes him. Hopefully all our children will have a bit more empathy as the grow older though.
Hope everyone is having a 'good' pain day. I am sitting down all afternoon after taking the boys to cycling club this morning, later I am going to a birthday party (no children, yay) and I have a pair of
Clarke's comfy range wedges heels to wear, I will pay for that tomorrow but for one night I am going to make an effort!
When I had my significant back problems a few months ago, my GP, Physio and Orthapaedic Consulatant all talked about chemical irritation of the nerve contributing to/causing sciatic pain and localised back pain. It was part of the conversation, certainly not a radical far fetched idea more a matter of course that this would be occurring. They said they wouldn't do anything about it as it was usually a symptom of a disc issue, however, if following an MRI no nerve impingment could be seen they would then introduce treatments directed at nerve irritation reduction. Following my lumbar fusion I was also told to expect sciatic symptoms for a while due to swelling and chemical irritation around the nerve roots so this is obviously is a very real problem. May be this different view is as we are not in the UK.
I hope everyone who is suffering has some relief soon as it is so horribly debilitating.
That's interesting Cat, they're obviously a bit more progressive where you are! I hope your fusion worked?
Lost how was your party? I hope you're not suffering too badly today!
Pavlov how are you today?
My back seems even worse this morning - I say seems because I haven't managed to get upright yet, I'm still curled foetal-style in bed. I had a lovely bath with the kids yesterday and didn't even get stuck, but my back got progressively worse during the evening and a night co-sleeping with a wriggly baby hasn't helped!
I feel fucking awful. Sorry for swearing and not responding more. Feel to rough to type
Oh love. Maybe it's time to reconsider that A&E visit? Gentle hugs winging your way.
hey, I am here. Sorry for being rude and sweary, was feeling very rough. much better now, thanks to a sleep and some friends taking DS for an hour so I could calmly take DD to her swimming lesson.
I have actually been really poorly this week I have come to realise, but I am on the up. Back pain is now bearable as long as I don't do too much. I really wanted to go to work tomorrow, and I just don't think I can I can feel my career slipping through my fingers. If this goes on much longer I am not sure how I can keep my job. I mean, I am sure they are not going to fire me any time soon as I work in a governmental post so they will follow protocol re disability and support me as much as they can, I have good sick pay (6 months full/6 months half) so financially it is not an issue, but how I can I demonstrate that this is something that will improve enough to have me back at work on full cylinders? If I can't demonstrate that long term, they would have grounds to medically dismiss me. And, even if they don't, I am no longer good at my job.
Pavlov My back is much improved these days from when I had my ruptured disc but does go into a horrid muscle spasm for a day or two every now and again. My GP gives me diazepam and it really does help although it can only be taken for a short time.
I was going to ask for diazepam on wednesday, but I asked for codeine to try in place of my tramadol and felt she would be if I asked for diazepam too! But, I should have asked for that instead, as actually that is what I needed, for my muscles to relax more quickly and for me to sleep, that would have helped my pain much more than either codeine or tramadol both of which wire me. I have had it in the past and find I only need like 5mg max x 3 daily for 2 days and that is enough to get me past the awful stage.
I did have an 'action plan' but my sickness meant it went all out of the window. I am going to have a medication review this week as I am not happy with how I am.
Glad it got a bit more bearable Pavlov. Mornings are complete arse aren't they?
When I went for my MRI the radiographer was asking me if I needed any work I decided that either my back didn't look too scary or they were just desperate for staff! I can't work properly anymore but I can manage
very part time, I have decided not to care too much even though I am bank staff so don't get any sick pay.
Muscle spasms are also arse. Sometimes they are worse than the actual back pain
but then I dared to dance for two minutes whilst wearing comfy heels last night so I am my own worst enemy.
vip I know we have spoken before about your back, but I can't remember, did your rupture heal on it's own? I know someone, can't recall who, said her back healed in about a year and she took diazepam at night every day for one year to get her through it and she managed to keep working.
lost did you have fun last night? Was it worth the pain today? I have not worn heels for a long time. well, not strictly true, i wore some to a christening a few weeks ago, hopped up on painkillers, nerve blockers, and took my biker boots to change into
are you a radiographer then wales? or a nurse?
i see I have shortened your name in two different ways in two different posts sorry!
Hello, I don't want to gate crash as reading this I have a sense of an ongoing dialogue but I had to comment about tramadol and odd symptoms. I had a scoliosis correction 7 years ago after serious pain through my teens/early 20's. So much of your fight with various medica could have come straight from my notes!! I also had suspected epilepsy for a while until we traced that to tramadol, it also makes my mum very 'odd'. I could take combinations of paracetamol, codeine, diclofenac (that took several goes against the spell checker! ) and (to be honest, my favourite) dihydrocodeine but not tramadol. I do wonder whether one of the issues with it is build up and whether that contributed to your sickness? I also hated the come up/come down feeling (co proxamol through teen binge drinking/uni anyone?! ). What I wished someone had shared with me pre op was stuff around pacing. The basic idea is that you never push yourself to the end of your tolerance, only ever to about 80% do you've always got 'spare' in the tank. So, for example, about 2 weeks post op (which was done anteriorally) at home I could sit in my big, supportive desk chair for 20 minutes but I'd sit for 15 so I had 5 minutes in hand. That sort of thing. What it stopped me doing was riding the rollercoaster that I'd had before of 'oh it's not too bad/am at the right point in the drug cycle' and doin too much resulting in more pain later in the day. It made me feel more in control (which I sorely needed pre op) and also made managing my pain meds more straightforward as I was taking them at the right point in the cycle so I dropped them faster than I think I otherwise would have done. My op was at Stanmore and I think I remember seeing a specialist clinic there for pain management of chronic back pain. I feel for all of you coping with this and with small dcs as well. I hope you hit upon someone/something that makes the difference to you soon.
MsPickle I understand what you are saying, I very rarely let myself get to the point of no return now. Sometimes I think I am a lazy cow but then I realise I know what makes me hurt and not getting to that end point makes me more productive in the long term.
Pavlov I am a radiographer, I can be quite evil in my head when an 80 year old is complaining that her new onset knee pain is 'inconvenient' or a larger patient extends an arm for me to lift them and when I say I can't they always manage to get up perfectly well on their own.
I think I prefer lost of losty btw. Wales makes me think I should be married to Prince Harry (although that could also be fun )
Not 'lost of losty' that would just be wierd . Lost or losty!
Oh pav that is shiteness. Haven't read full thread but go if you need to. Take phone with net access and we will chat to you. Will come back and read properly later x
And yes, I had a great time last night although my friends were wondering where their party animal friend got to because we came home quite early but I couldn't cope with standing up or sitting on the uncomfy chairs any longer. Bastard backs stopping me staying out all night getting drunk and stupid actually, there might be a silver lining there
mrspickle not gatecrashing! I just yabber tramadol talk! I completely understand about not pushing it, and I am notorious for doing that. And that is a huge reason why I want to stop the meds, or reduce them drastically. It is not that I want to be in pain, but the nerve blocker in particular, it was a great nerve pain reliever (horrible horrible side effects) but it meant I pushed myself too far, as I could not tell so easily when I needed to stop.
I do often forget so thank you for reminding me, and great advice about keeping a little back in reserve. That is what I have to do re work, esp tomorrow, I could probably get in, but it would use all my reserves so if I relapse, I have nothing to fall back on.
I keep going back to the tramadol as the possible cause of the vomitting, I just never did that on the other painkillers (not had dihydrocodene, only codiene phosphate) but I am regularly sick for a day since taking tramadol, at least once a month, sometimes more than that, just for a day, but enough to notice. GP just changed me onto slow release.
How long has it been since your op? how are you recovering?
losty it is then
giraffe I am better than I was, but be sure, if I go to hospital at some point in the future, I will be taking the ipad with me even though it is actually DHs. The laptop battery doesn't charge without the power lead, so what choice do I have? do they have wifi there? I have bt which includes free hotspot, so if they have hotspots I will be ok without a dongly thing.
I do think, at the rate it is going downhill/keeps happening, I am going to end up there, as I am reaching tolerance breaking point. Just thankfully not this weekend, DD has been so upset, not sure she would handle it well.
losty least it saves you money
Hi all, just posting briefly after skimming through today's posts. I have two things to say:
1) I may live in mortal terror of sneezes but the tickly cough I have atm is worse
2) Are you familiar with Spoon Theory?
I hope everyone has a good night.
puddle oh i love that theory! It is so true! and it is what we have to do, and what we do, certainly what I do. I always make those choices. If I do x I can't do y or z and have to think about those decisions carefully.
In fact, I wonder if my boss has read this. She once said to me, when I was doing physio 'think about your time if you are in pain. if you feel you have a window of just 2 hours feeling ok in a day, think carefully about whether you can be in work, or if you need to cook dinner for the family or if you need to take a nap in that time, don't just decide to come to work, if that means something else important won't get done' (she has a disability herself so would not surprise me).
I am going to keep that in my head, maybe even buy a print for the wall
and crap you have a cough horrible pressure on your back, hope it eases.
Puddle the spoons thing is perfect. I may share it with some of my friends. That perfectly explains life with a shit back, although I also have a friend with lupus who will love it even more than I do. Here's looking forward to a week where we all find more spoons than we expect.
Pavlov My ruptured disc did resolve itself although I don't know exactly how (my consultant said he did not believe in MRIs or x-rays unless needed for exact info for operating, preferred to diagnose and treat by symptoms wherever possible)
I had ibuprofen then diclofenac with Co-Codamol 30/500 for the initial episode which lasted about 8 weeks at full tilt then about 4 easing off. When I get flare-ups I had been managing with the same painkillers till GP suggested diazepam 2mg three times a day for maximum 1 week but I have discovered that, if I start quickly with it, I rarely need more than 3 days.
I have been very lucky that my back has settled almost totally
oh that is great to hear, a positive story that has resolved without surgery. i am definitely going to talk to gp about diazepam for v short periods when it is really bad and get rid of the other meds (in time, no point being silly about it when i am going through an acute episode)
thanks again everyone for your continued support, you helped me out of yet another dark time. sleep well everyone.
Hi hope you're all better this morning! I'm 7 years post op and have to say that it's the best thing I did. I have some residual muscle aches where I was unbalanced for so long but am by and large symptom free. I was deteriorating so fast (almost a degree a month) by the time surgery happened that I didn't have a choice. I didn't lose as many discs as originally thought so I lost very little movement really. And I was so proud the first time I showed my mum I could touch my toes!!!! . I have wear and tear right at the base and know that in later years I might need further help but tbh I'm still grateful for every morning I don't have to cry as I get out of bed.
gp has prescribed pregabalin. I don't want to take it. I have read the side effects and I struggled with many of those that were 'common' for gabapentin and also amitriptyline, the similar ones. I am already dependent on tramadol, I don't want to be so on another drug, and I don't want another 4-6wks of the horrendous side effects waiting to see if it works. GP was insistant I used something or else I would be in pain. She has attributed this level of pain to the stopping of amitriptyline as I can't cope on the side effects. She was quite insistent, tried to convince me to keep on with the amiptripyline first.
I just don't want to take these mind altering, personality changing drugs. I feel really upset as I don't really know what do do now. If I don't take this drug, it will therefore be My Own Doing, this pain right?
I just want to be me again.
On a good note, I went for a swim(4 lengths on my back mostly floating), steam room and spa pool, then sat in the disabled shower in very hot water for ages. I feel a lot better in myself, but unsure what do to about the meds. I might post a thread about pregabalin, I am sure I have before, but can't find it.
I can't advise on medication I'm afraid, the last time I was on anything was about 8 years ago and it was amitriptyline, tramadol and/or diazepam in various combinations. Amitriptyline and diazepam didn't do anything, tramadol made me very spaced and alternately throw up and pass out. Then I was told that there was nothing further the doctors could do and I would have to put up with it. I was 23.
Now I'm older, wiser and angrier and I refuse to be fobbed off. I've managed to get an MRI and an appointment with a consultant a few weeks later and I will not just go away quietly. If I have to stamp my feet (ow) and throw my metaphorical toys out of the pram then that is what I shall do. I have 2 small children and I want to be able to play with them, to be able to lift them, to go for long walks with them. Atm I can't even pick up my 10mo without a sharp intake of breath because it feels like someone's sent an electric shock up my spine. Add to that the permanent burning, tearing pain across my lumbar spine and the occasional sciatic pain in my legs and I really am not a happy bunny!
Sorry for the verbal diarrhoea. I'm not sure where all that came from, I guess I needed to get it out of my system a bit.
Pavlov this pain is not your fault, whether you're medicated or not. The pain will still be there, it will just be masked or muffled to a degree. It's up to you what you take and how you manage this but it is not your fault.
joyful you got to get it out sometimes, and you have to fight. Although I feel right now like banging my head against a brick wall, the letter to spinal pathway still not having been done today, but you have to fight now more than ever so you can enjoy your children. It is important.
I threw up again this evening, and in front of DD and DH shushed her out of the room with her hysterical 'mama! mama! i want mama! i don't want her to be sick any more or have a poorly back any more i don't! sobbing her heart out.
I am not going to take the pregabalin.
Oh Pavlov, I wish you didn't have to go through this.
me neither dilly, But, i really do have to get my shit together. I keep wallowing. I am going to start by going to the gym most mornings for quick swim and spa. can't hurt. No more drugs. I am not doing it. I will stick with tramadol as i need some pain relief, and diclofenac as anti-inflammatory, omeprazole to ease my stomach. No more drugs that send me loopy and stop me living. I said to DH today, maybe it is better to find a way to live with the pain and for the children's memories as they grow to be mummy with a crutch and sometimes had to rest a lot, but always laughed and was happy, rather than 'mummy was always out of it, and her moods always changed, i remember growing up with a sick mum' i don't want that. it is scaring the hell out of me.
And I have no idea why i threw up again, but my meds all came up. again.
Did you enjoy BlogFest?
<curtseys to Dilly> Awesome blog post re that Jones woman (sorry I honestly can't remember her first name at the moment) we do not look our best when we lash out at people. Sorry
Sorry you are having a crap time Pavlov. I have started not reading side effects and just seeing how I go, normally I go 'ugh I hate feeling fuzzy/sick/pooing blood' and stop taking them but I try . It is so frustrating, you feel that there really should be a good safe painkiller that you can take without all the shitty side effects. It is NOT fair. I don't know if it is helpful finding you lovely people who are in the same situation or if it makes me even more pissed off that there are so many of us and still no one seems to be really bothered about doing anything.
My next great hope is physio, there is a good back physio in the next village and I am sodding well paying for it was he is the only one and he's private. Swimming gently sounds like a great idea, the warm shower sounds even better <jealous>. I am puzzled as to why you are being sick, are you withdrawing from anything still or taking anything new? I have been sick and grim today but I ran out of my Omerprazole so I would imagine that is just the logical progression of untreated reflux! Thank you NSAIDs, I can't take you anymore but still you wreck what I can eat and drink. Joy .
Pavlov, I'm so sorry that you are still going through all this. It's completely bollocks that you're still in so much pain and dependent on horrible drugs with side effects. It makes me so annoyed. <Vastly unhelpful post>
The gym sounds great to keep you moving at your own pace. It's just so unfair that your own pace was kayaking until very recently. If it takes surgery to get you back again to even a fraction of your old self, then it will be worth it. Your GP must refer you to an appropriate consultant. Maybe as others have suggested, it may be worth a private consultation just to discuss options, and see what treatment is available.
I lurk more than post ATM. I'm feeling so much better, I feel like I have my life back. I want the same for you, and have to be optimistic that you will get through this.
Awww pav, really shit for you . You have to do what's right for you and the kids. I really hope it's not a long term thing and you can be you again.
Thanks btw LostInWales . BlogFest was great. Real #powerofmumsnet moment. Lots of food for thought. Caitlin Moran was totally worth sitting through the Liz Jones car crash!
Gentle hugs for you Pavlov. Tomorrow will be a better day.
<waves to Lost and Mad> Sorry, I can't concentrate enough to write a proper response but I hope everyone has a peaceful night.
Today is indeed a better day joyful. I did what I planned. I got up with the family (ok, 20 mins afterwards, but close enough!) I had a small bowl of alpen, sip of coffee (for some reason coffee is not going down so well atm), then back to bed for 10 mins to take meds and recover from getting out of bed!. Then, forced myself up again so DD did not have to come to me in bed for her hair to be brushed. Did her hair, cleaned the kids teeth, sorted out DDs collar etc, waved them off at the door.
Then, DH and I went to a lovely little cafe near the sea, and had breakfast. I ate beans on toast and both that and the alpen have stayed down. Then to the gym where I did 10 lengths. admittedly those lengths are only 20m each, but still, some on my back, some breaststroke, nice and slowly. 10 mins in the sauna, no spa pool as it was packed for some reason. Then 20 mins sat in the shower, shaved my legs. And now I feel almost human.
My back feels so so much better for the little bit of water exercise. I am going to this every morning for now and try to get there earlier each day so I can get there before work when I get back there. I used to go at 7:30am 3 x week and get ready for work there.
DH is a bit concerned that maybe I should take this new medication. So, over breakfast we had a chat, and agreed that as I have been so unwell this last week I need to get my body back on track, get eating 3 square meals again, keep exercising, get my digestion moving properly again, get rid of feeling of sickness, take the meds I have. I agreed that if, in one week I am not in some control of my pain then I will try it, as long as every other aspect of me is feeling ok.
I hope everyone here is feeling ok today and has some respite from their pain.
That sounds like a wonderful morning, and you sound much more cheerful today. How's DD today?
My back still isn't great but it's better than it has been. It wasn't helped by spending an hour and a half chasing DS around the floor at the HV clinic this morning but I only have to do that one morning a fortnight so I shouldn't complain.
DD announced earlier that she wanted to sort through her toys and books to see what she doesn't play with any more. She wanted to give some to DS and "give some to a shop for children who don't have many toys, so that they have something nice to play with". I was so proud I nearly burst! She sorted them into a box (I rescued a couple of items) and we took them to one of the charity shops in the village. She chose the Link Romania one because it had pictures of children in the window, and she wanted one of those children to have her stories.
Pavlov that's brilliant, so glad you had a good day. Now don't laugh but there's no chance you could be pregnant is there? . Just the nausea and increase in pain. Probably the most stupid question ever. Ignore me.
I am in burny burny pain unhappy place but we went to an open evening at Ds1's school last night and there were so so many flights of stairs, all concrete and harsh to walk on. Sod the spoons I think I chucked the whole cutlery drawer out . Was lovely though and DS2 will be going soon so very reassuring to see everything.
Yay for toys to Romania, mine are banned from anymore stuff until they take some things to the charity shop.
joyful aw that is just the loveliest thing for your dd to do! And nice that you gave her the choice. Sorry you are suffering as a result though.
losty that has entered my mind briefly, as, if I were this is exactly how I would be, have been with both pg so far, and with ds. From like 10 days post conception I threw up many times a day throughout, had to have medication to help ease it, the smellof coffee and alchool made me throw up, like this past week. BUT, I have the contraceptive implant in, which is
allegedly 100% fail safe if put in properly, and I have had in it almost 2 years. And several of my friends have gone at me too! I am pretty certain I am not pg. actually, Dh asked me if I had the implant taken out, as we had discussed me doing it, wonder if that was why he asked? !
Oh Pav I remember well you being preg! So pleased you managed swimming etc
ps have you tried ginger biscuits?!
giraffe you best run fast so I can't catch you
I feel soo much better today. I can't believe how much. Last night a friend of ours came over, and stayed until 9pm, then I stayed up until 10pm and felt good, not knackered, in horrendous pain, just some leg pain and was starting to hobble but nothing awful. DH was quite sweet and said that maybe I should go to bed then while I still felt good so I did not fall into bed shattered like I have been doing for a long time, maybe I would get a better nights sleep. So I did! Admittedly I went on the 'net for 30 mins, i like doing that before I sleep.
This morning, my back is not spasming, just stiff and sore, I can deal with that. Oddly the numbness and pins/needles is increasing once again. Not surprising as I stopped the nerve blocker, but in the mornings, it goes from my toes, up the back of the leg, into the inner thigh and a bit around my groin area. But it clears as the day progresses to just in my calf, and in particular in two of my toes. feels like when you have been playing in the snow too long.
DH is so much more supportive, had a few heart to hearts and although he can still be a selfish git, mostly when a particular friend is either around, or has been around him, he is much improved. I think, secretly, although he won't admit it, my blog helps, as he reads what I am thinking/feeling and also other people's responses, and it is harder for me to speak to him face to face, he gets defensive sometimes. I do still find he acts more like a carer than a lover sometimes, you know, he will change the bed so it is clean and comfy, but where, once upon a time he would fluff my pillows and give me a kiss if I was poorly, he doesn't do that anymore. Or when I was throwing up, he would empty the bowel, get me water, and a damp cloth, but once upon a time he would stroke my hair/back, sit on the end of the bed and hold my hand when I am in pain. It makes me sad, but I guess, with being ill in my pregnancies and now this, he has just run out of those little personal things. And I shouldn't complain, he does a lot.
I am off to the gym again today. Not going mad, keeping it like the last two days, gentle swim, nice and slowly, spa/sauna, and maybe a coffee/newspaper in the cafe after.
Oh dear, is pregnancy not good to you Pavlov? Weirdly my back improved a little during pregnancy but both times I ended up housebound with dreadful SPD/PGP and couldn't walk.
I'm glad you feel better today, and it sounds like you had a nice evening too. It's good that DH is better too, although sad that you feel he's more distant than before. How's DD coping this week?
<waves pompoms (carefully) and has a little cheer> Brilliant, gently gently now so you don't set yourself back and hopefully you will have little improvements every day. I'm sure if you have more lovely mornings with DH like you did yesterday you will refill his caring/sympathy bar up again (sorry with 3 DS' I tend to think in video game analogies)
I got my MRI results today and I have one bulging disc and one with an annular tear. I'm not sure what this means but I will book my physio today and start getting on with it. I'm used to having bones that are wrong to it is novel to have interesting discs too. I had a quick google and there was a mention of 'chemical pain' so your senior physio knows what he's talking about then.
Sending out warm wheat bags to everyone with a sore back
lost will you get a chance to talk through your MRI results with anyone, a consultant or doctor, did you see the MRi, or just the report? I found it was all just words on paper, no-one explained it at all until I got to the neurosurgery team, but that was not due to the MRI, that was due to my physio not having a clue what to do with me due to pain levels. What disc is torn? does it say what kind of tear? is it the same disc that is bulging? does it mention foramal narrowing/end plates etc? mine told me all that stuff!
joyful pregnancy was not kind to me at all. No sir. second was worse than first. I put on 7lb in total by the end of my pg. DS was 7.5lb ! She is better today, noticed I was not sick yesterday, she is happy when I am happy and coping, but when I am not well, she crumbles completely. I think we are very lucky we have not had behavioural issues around it, but I have noticed she is getting more aches and pains, belly ache, sore throat, legs feel achey, head hurts etc and wanting more reassurances around these things.
I got a letter to give to the physio so outlining what he thinks is causing the pain etc. I have L4/5 bluging to the left and L5/Sacral disc with the all round bulging and annular tearing. He doesn't think they are too significant apparently. It is very frustrating as all he mentions are discs and I know I have severe degeneration in the bones and that has caused me a lot of pain for 10 years now. Why is it you feel they are just not listening to anything you say? I know that there is nothing surgical to be done but I might have some facet joint injections. Sadly I can only have them in the lumbar spine though. It was interesting though, I do wonder now if the really burning pain I feel low down is the chemical pain you were talking about? I am 'lucky' in a way though because I can get about day to day unlike you when you are bad. Bad days I can't do much but I cope. Plus this has been gradual since I was 16 so whilst I get so fed up not being able to exercise much and do things, unlike you I have had lots of time to get used to it. I can't imagine kayaking one week and being crippled the next, your brain must still think it can get around and bounce about. Bastard backs, we still have a lot of evolving to do to cope with being upright and having big heads
I hate it when they say 'not that significant' they said that to me from my May scan. Really?! Well you try being me for a month and then say that! Because, in reality some people can have a horrendous bulge, in just the right place to not cause too much pain. Or, a relatively small bulge in just the wrong place. So the size is pretty irrelevant. And, in terms of chemical pain, that is the tear I am certain of it.
My physio (not the senior one) tried to get me to do pelvic floor exercises, not giving me a sheet with them on, but using my valuable physio time 'practising'! I was like 'i have two children, I read the sheets they gave me in hospital, can we spend 20 mins doing something more productive?' I stopped going after that, as well, pelvic floor exercising is not going to fix my discs.
It's very subjective as well, medicine is more of an art than a science unfortunately. DH had an MRI where they said he had something wrong in one place but a second opinion got him admitted to have the injection in a completely different place and within hours was walking around like a normal person again. They are very big into building a muscle core aren't they. I have one though, built it up years ago (it lives under the layer of flab that has appeared now I'm not allowed to the gym anymore) doesn't actually seem to do that good IMHO and it is certainly most unhelpful for the higher bit.
Do you think 'normal' people wake up and just get out of bed instead of tentatively working out which bit hurts most first?
I'm like you Losty, this all started when I was 15 and gradually got worse. All I know is that I have 2 prolapsed lumbar discs (I have no idea which ones) and vertebral degradation in the lumbar spine. I have a new MRI appointment on the 24th and I'm hoping that it will show something treatable.
I used to do core exercises religiously every morning but they never seemed to make any difference. I could do with losing about 4 stone and the consultant I saw a few weeks ago reckons that my weight is a contributing factor to my back pain - except that the back pain came first and has restricted my exercising, which is mostly why I have gained weight (comfort eating hasn't helped!).
I am just so fed up with having to steel myself before moving, with taking half an hour to get upright in the mornings, with having to drive DD to preschool (about a half mile walk). This should not be my life. I want to be able to play with my children, I want to be able to pick up my baby without stifling a scream, I want to be able to run around and do things normal mums do.
Sorry for the whinge.
Oh Joyful (Puddle? Jumper?) I don't know what to say . Everything you have written I could have written too
especially the 4 extra stone now I've stopped exercising. It is very nice to 'meet' you but I hate that you are in the same situation too. It is fucking unfair.
I lost it at my beautiful 10 year old this evening because once again he had messed up all the football kit and lost his shin pads. He doesn't deserve me ranting especially not 'every time I tidy this it causes me pain and now I have to do it again because you don't think' and then run upstairs crying because I can't see me ever not being in pain in my life again and that really really sucks. My turn to whinge
Pavlov I found this passage;
' evil biochemicals called cytokines, which are spawned from the degenerated disc itself (especially the nucleus pulposus) which, because of the passageway created by the annular tear, come in contact with the nociceptive (pain producing) nerve endings in the outer annulus and initiate a painful inflammatory process' . I particularly like the bit about evil biochemicals . There was also this;
' The other thing that is important to understand is that some patients can have annular tears (especially construction workers or similarly arduous employments) without having any pain at all. It is still not completely understood why some patients suffer horrible pain with annular tears and others don't. It probably has something to do with individual sensitivity to the cytokines and/or the patient's own immune response to the chemical exposure upon the sinuvertebral nerves ' which I thought was particularly interesting.
I am sorry too that we all have to have met in such unkind circumstances, but, I am very pleased to have met you all, I have met some wonderful supportive people on MN, who have opened my eyes to what I should expect from the medical routes, what my rights are, what to ask for. If it were not for some fabulous people I have met along my journey, I would still be struggling along, trying to work, taking meds and never have pushed for the MRI, diagnosis (if you can call it that) let alone the second MRI I am due to have. There are people like us who have come out of it the other side too, like vip and others on here, and they can give us hope that this does not have to be like this forever.
I continually do not understand why the medical professionals are ok to let people just fester, struggling. We are people, with lives, we are worth more.
joyful not sure if you are aware, might have told you before, so ignore me if I am repeating myself - I was told by spinal pathway last appt that if a further MRI shows surgery is not viable, they can do direct steroid injections to relieve in particular nerve pain but also localised pain. This is more effective than the caudal injections which are more 'hit and miss' as not so targeted. I am thinking this might be helpful for you as you can't take most of the pain relieving meds. I am going to push for this/localised patches as I don't want the side effects. I have had caudal injection with no success but had been told 50/50, where this direct injection is meant to be hugely more successful.
I have pain in my left leg again, numb patches and pins/needles are back, two toes are numb on left foot. BUT, I have a clear head. I can think straight (tramadol doesn't really affect me much these days, it's coming off that is the problem). It might sound daft, but I prefer to have that pain and my mind back.
losty I remember a time when I sprang out of bed without a care. I remember being able to sit and not get up slowly. Everything takes so much time and thought now.
oh, and I went out last night to a ladies night at a primary school of a friend's child. All arts and crafty stuff for christmas. I walked/hobbled past a reflexologist doing taster sessions, 20 mins for £5. So I had one! Oh my! lovely. Had a good chat with her about how it can help with pain, and in particular chemical pain. She spoke about how it can help to release the buildup of toxins in the body, and while it can't fix the problem it may help to alleviate some of the symptoms, or ease them a little. Also said it may help with some of the side effects of pain relief. Although keen to stress different people responded differently, some people have a lovely massage, some get much more from it. Yesterday was just a lovely foot massage really as she said normal session is 50 mins, and gives her time to think and learn about areas that need more work, in particular where I have numb areas/pins and needles. But it was so lovely. I am going back at some point soon for a full session £25! DH thinks it is all 'quackery' but who cares, however it might help is good enough for me.
got my spinal pathway appt in the post today, 1st December. Not MRI, guess they will make a decision for the millionth time there about the MRI, despite it being offered already by spinal pathway, and gp, but now back to spinal pathway and then more waiting. But, can't complain I guess. Least I am being seen now. Just worry that they will try to fob me off again.
Weird though, GP sent me some paperwork about it, said they would be in touch with me soon to arrange an appt with me, where I will be given the opportunity to choose my hospital, arrange a date etc. But, nope this letter tells me when, and where. Shame, as I didn't really want to go to this hospital, but it's better than nothing.
I feel less jumping for joy than perhaps I should. Just taking soooo long.
3rd december. 1st is a saturday, that would be strange, although my local MRI scanner does them on sundays from time to time
Oh that's good news! I mean yes, it's frustrating that it's taking so long but at least you have an appointment now.
Do you have anything nice planned for the weekend?
That's good news then. How was your day today? I have to say I thought about you lot when I was doing my 'unload the dishwasher without bending forwards' routine. I must look hilarious to an observer.
Whats 'spinal pathway' by the way, sounds really promising.
lost it is the assessment team at the hospital, it is a team of senior physiotherapists and neurosurgery doctors who assess the patient's symptoms etc, review the MRI (order one in this case) and make a decision about whether the patient goes to neurosurgery team for spinal surgery to be discussed, or whether to send them to the Pain Clinic/back to Physio/both/all three. The GP can send me to the Pain Clinic, but this team consider if surgical route is to be considered, although does not mean it will be.
It is where I should have been sent a loooong time ago, and the only reason I knew about it was thanks to some MNers who advised me to look up the spinal pathway route on the PCT website, it shows the route the gp etc needs to take with back pain (primary care, spinal pathway, pain clinic etc). I was finally referred in August, quickly as a physio I was working with spoke to her senior boss and they between them persuaded my GP to refer me after a chat about surgical options and the young physio could not get me moving. They promised me a further MRI and consultation if the nerve pain did not ease/got worse after aggressive physio. I suspect he was hoping to get me out of the door, but physio actually made it all worse, although I can now stand straight. They just delayed the inevitable.
joyful I think it is just well, it has come on a bad day in terms of the impact of this all on the family, and I got the letter (hadn't checked post box) after DD got home from school, having been excluded from 10 mins of golden time due to continued talking in class/not listening to the teacher. Apparently it has happened a few times this week and the teacher has ben lenient but could not 'let it go' today (i personally think it is ridiculous to punish a 6yo for talking by removing her from her peers but hey ho i am not a teacher, I need to ponder it a little). I knew something was wrong when she walked towards me when she got home. She was absolutely distraught. She in her eyes has let me and daddy down, she was terrified that we (i in particular) would be cross and put her on the naughty step (not done that for years) and all sorts of fear. I saw in her eyes her anguish.
She has never ever been told off at school, never missed golden time or gone on the cloud. She is model student so to be in trouble she had no idea what to expect from anyone and was scared of what was going to happen. DH said 'i don't think I need to say anything do i?' and she burst into tears on him, asked him not to tell me. FFS it is not a huge deal. But I did not let her see that, I said we were a little disappointed that she had not listened to her teacher, but said that she has had her punishment at school (loss of golden time) and actually, she has been such a good girl that I was not cross, nor would I become cross unless she does not learn from it and try hard to not let it happen again. I hugged her so hard, wiped her tears and struggled not to let her see how much I was fighting back the tears. My poor baby girl. It took me a very long time to calm her down and she went to sleep just a little less, i don't know, bubbly. I just want to go and tell the teacher how unnecessary it was, I told her our situation so she could support her, and instead of doing that, she did something that has never ever been done to her before. The timing was shocking. And she was with another girl who lost the same amount of time - that girl had told a lie. That is huge!
<rant over> sorry, so anyway, that has played on my mind, and once again I find myself tearing myself apart with guilt as to how much this is damaging her.
This weekend, not sure about plans. DH is working every morning, maybe visit some friends. Oh and finish DSs birthday party invites.
Pain - ok, bit stiff, sore, lots of numbness in one leg which is getting worse and creeping up into my buttocks, but it worse in the morning and night, eases in the day time a little.
Sorry for the epic post. How are you all? ok? hoping you are having a relatively pain free day, if that even exists.
Oh poor DD, that must have been a horrible shock for her. Fwiw I think you and DH handled it just right (although mine are younger so I'm not there yet). Hopefully she will be a bit perkier in the morning and maybe you can have another chat with the teacher on Monday?
My back has settled down a bit today so I managed to get some decluttering done. And then spent the evening having a meltdown on the Mental Health board. Off to bed now, hopefully I'll
have a half decent night's sleep!
Hugs to everyone.
Oh well done for decluttering, hope you are feeling ok? glad your back is feeling a little better.
I have posted a huge epic thread about DD. I have not encountered 'trouble' at school so I don't know what is normal for teachers/what is to be expected from things like this at school, but i feel very upset for DD, and I am not entirely convinced that the right action was taken.
Hope you manage to sleep well. I might aid my sleep with a little Honey JD.
Hi I am glad you have a way forward now and hopefully they will be able to get it sorted for you. It seems that one always has to fight so hard to be listened to and for appropriate treatment when its the last thing you need to be put through on top of everything else. I am lucky that here in NZ it seems I've had it easy with the medical profession- no real fighting needed.
My DS, also 6, became extremely clingy and would not leave my side and went from a happy, well behaved boy to a sad, worried and naughty child. He was told off at school for intentionally snapping all the classes pencils in half and was in tears about it as he had never been told off at school before and reacted in what sounds like a similar way to your DD. It actually was a catalyst for him really opening up to us about his worries. Previously when it was obvious he was sufferring it was always general coments he made about not liking it when my back hurt. He had never spoken about the one thing that really troubled him about the situation- 'Mummy was going to die soon as if you are poorly you die'. We worked through it and found a way to help him understand the process and outcomes.
I hope that the next appointments are positive and you don't need to use valuable energy fighting to be listened to.
Hello everyone. Have some and [cake] and <--- (That's a magic painkiller without side-effects). I hope you're having a good weekend.
I've just been crawling around the floor with DD, playing at being dogs. It hurt like hell and I will no doubt pay for it later but the joy on her face to have me playing with her like that was completely worth it (I hope I feel the same later!).
Oh so glad you were able to get down on the floor with your dd, how are you today for it? Hope you are not struggling to badly for it today. She must have been so pleased.
I am feeling better back wise, some mild occasional spasms, leg pain and numb patches but manageable. Back to work tomorrow although sick note lasts til end if the week. Got to just keep going on as normal. But can't shake a more general feeling of unwell ness
Hope work is going ok Pavlov. Is it a physical job or can you keep yourself ok by sitting/standing when you need to?
Can I ask a quick question about tramadol, apart from the awkward addictive bit when you stop taking it being a bit of a pain, do you find it helps with the pain much? I am having a shit day and contemplating taking them regularly to see if I can get past the euphoria and function better with a bit of pain relief. Also do any of you lot take muscle relaxant type drugs, I couldn't decide if the spasm of muscle pain in my upper left back was worse this morning or if it was the shooting pains in my right thigh. Happy days
<scatters about the thread to tempt people back>
lostinwales sorry you are in pain today i sometimes use diazepam to contol spasms, but go is ever keen to gove it. i also use ice/heat packs alternately 20 mins each every 2 hours to help reduce spams and on the days the spams are bad I lie flat and still for a good few hours. (Ignoring the whole, don't keep still theory).
Tram afoul is pretty fantastic as a chronic pain releif. I forget that when I stop it, and am bombarded with pain again, but just worry how much is real and how much is withdrawal, I suspect it is helping pain significantly more than I like to admit! It works by converting its opiate into morphine in the body, I think something like 5mg morphine for 50mg tramadol, compared to around 1mg for similar dose of codeine. I would suggest asking for modified slow release tramadol. I take 100mg morning and night (have reduced to just 100mg a day now though) and the side effects are significantly less than 50mg x 4 daily. I found I would get much more seasawing of pain as it wears off, as well as having to remember to take, and it stopped me sleeping at night as the dose was so concentrated and wore off in the night time. I now hardly get any side effects at all -the biggest one I have is constipation, so make sure you up fruit, veg, water (prune juice is great is you can bear it, i love it myself!) and if you are slowing down take movicol. Oh and i talk much more than i did before I had tired sleepy side effects for no more than 3 days to be honest, then it all reduced ands I only remember I am on it when I forget to take it for more than a day . Think about whether you might need to take any nerve lockers in the future with it, as it increases serotonin, as do some nerve blockers, so you may be a bit 'overloaded' with serotonin which make make you feel a bit unwell. But, if you have tried other pain meds and have thought about the withdrawal (takes about 2-3 weeks) then it does work well as a pain releif if you can get over the side effects.
My work is office based, they are really supportive, I have a new expensive specialist chair, can get up and move around whenever I like, have been given an interview room close to the reception for seeing clients, manage my own workload etc so can go in later/work later if I need to. Gp has also given fit note with phased return on reduced hours for one month,gradually increasing.
But, not in today as toddler is unwell! Dh gets paid hourly and already taken time off to look after me and the children so my boss has agreed for me to go in tomorrow instead, which is my normal day off. First day back yesterday felt so good to be at work! Although colleagues said they would ask me again in two weeks!
In terms of my back, I am soooo much better. Can't shake feeling of unwell ness but, with ds sick, maybe I am just unwell with his bug! All the meds I have been on over the last few months have seemed to result in no colds, or I don't really notice, so maybe it's just a bug that is a bit hidden. I mostly now have slight twinges in my back and leg/nerve pain and pins and needles.
Really hope everyone else who has been suffering recently is not struggling too badly today.
Thank you for that brilliant reply, I am going to give it a go today. I don't need to do any driving which was worrying me so I will take one now and then see if I can do my homework (I am doing an IT/maths degree part time so fuzzy head isn't really an option ). I've got my heat bags squished up my spine at the moment which is making me very popular with my whippet as he loves anything warm .
What a sod that your toddler had to be poorly today, typical, work sound brilliant though. I was fretting this morning about the weather as if it snows we are expected to walk in if we are under 3 miles away, which I have done happily in the past but this year would just be impossible. Fingers crossed I don't end up on the rota on a snow day! I hope your toddler feels better soon poor thing such a bad time of year for all the bugs going round. Hard to tell when you are poorly or not with all the medicines, I was taking one last year that you had to be careful with as it would mask the signs of serious fever. I wish I was a scientist that could make a specific drug to treat pain and not wander off around the body affecting lots of different systems too.
Oh dear, my friends say I talk too much already, this could be disastrous!
I actually find now, rather than making me swimmy it is more likely to make me 'wired'. You may find the same after a couple of days, so if you get time to take it and not work, chill out at home with not a huge amount of responsibility like school runs etc, you may find after those first couple of days you can study well on it. I found with codiene for example that I could not work on it, I felt too drugged up and felt that it was quite noticeable, I sort of peered a lot and did a it of burning of the jaw, struggled to fully focus on conversations, but with tramadol I can work fine, as long as I have not had to take more than 200mg (occasionally I have topped up with normal release which gp has said ok, when paid increases, to a max of 400mg in one day). And I often find myself awake longer in the evening typing away on my blog etc (not this last week). I hope you find it works and gives you a bit of breather pain wise.
Funnily, now ds is watching Thomas and eating his lunch in bed, he seems fine! Well still has a fever, but not particularly unwell with it. So I have cleaned the kitchen and now doing a much needed Internet shop, plus birthday shop online too. I love the Internet!
Apologies for appalling writing in my posts, iPad corrects to easily and often incorrectly!
Actually having given in and taken it I'm feeling really clear. I think last time I was expecting myself to be sleepy so I just sat on my bum. I did catch myself singing whilst emptying the dishwasher though . I do feel a difference pain wise, seems an odd way to put it but I can almost feel where it isn't. That possibly makes no sense! Codeine just makes me so wooly,even my tongue feels swollen when I take a high dose. Tramadol as a study aid, that's a new one.
I love the internet too!
No not silly I completely get what you mean, that is exactly how tramadol effects my pain, I know it is there, it just does not hurt any more, especially so for the first few weeks of taking it. I he you stay clear headed and go girl with the singing!
And. Not suggesting you go and get hammered, but if you do like a glass of wine or a beer from time to time, I have been ok with two glasses of nice and slowly drunk wine and a couple of beers, not drunk, or out of it, or sick either then or the next day. Everyone's tolerance is different though Ian's I am sure a bottle of wine might have a totally different effect!
That is, a couple of glasses or wine, OR couple of bets, not followed by! And I only do it rarely, which is a shame. For some reason it have messed up my taste buds and I no longer fancy alcohol. Not impressed as loved to have a glass of three of wine to unwind when kids where in bed sometimes, just can't get past the first couple of sips too often without tasti the alcohol rather than the flavour.
It's working really well, thank you Pavlov! My friends are both farm girls and commented today that I was looking much looser with a better stride, I think that would be a good thing if I was a horse anyway! I'm getting loads done as well a combination of low pain (woo hoo) and I think they do make me a bit 'wired' as I have been doing lots of bits and bobs that I would normally just ignore. House is actually starting to get organised.
I am so glad you are getting some releif. Makes such a difference to have some respite, glad you can do some of those things that get missed too!
Join the discussion
Please login first.