The Back Story

[Matildathecat]

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)

matilda oh it's so fucking annoying isn't it. I am sorry for swearing but I'm having a sweary day and this is mild Funnily, the pain clinic guy said that the neurosurgeon would have had my MRI uploaded to his email/file/whatever within an hour of me having it done. He also said meurosurgeon's generally disregard the radiographer's reports, ignore, don't read, overrule, disagree, whatever, and he had probably already looked at it the day I had it done, or the day after at least, and made his decisions then! So he didn't need to be waiting the two weeks for the report to be sent from one end of the hospital to the other.

He was full of sympathy, lots of sympathetic noses, crumpled brow as I sobbed how shit it all was, and how fucking slow it all was. Mindfulness. That was the sum of his input. Come to terms with it. Learn to accept a level of pain, and not expect pain free. no shit sherlock! I hate sympathy btw. It makes me want to shout 'stop being nice and fix it!'

Sorry to hear physio is being delayed until all the admin cock ups resolve Pavlov.
Ilove sprouts, I'm sure you could do with a tardis. All this legalese PC stuff of not apologising for serious injury ( and not telling staff why people are missing - ie ill) is frankly inhuman! I am so sorry you have had such a major injury, but hope you recover better than could be expected - whatever that is. Its bad enough coping with life changing illness but when another party is responsible, the emotions and anger must be so much harder.

I wanted to ask about hot water bottles. I use one on my back/ neck, ie the source of the pain, but yesterday driving, the pain in my leg got particularly irritating (as it does sitting in a car) so as I was stuck in slow traffic I put my warm hand on the worst affected thigh and it seemed to help. Therefore I wondered if (and if so how?) it was worth using heat on my legs too. Mind you I only have so many hotties!!

I have a couple of frantic days left to get my pre-Christmas preparations finished! Better get on with it then (only working half day today).

Hope today is a better day.

Is a coincidence that lots of nn on this thread are cats/kittens?

I don't know of prolonged use of heat on muscular pain but remember one of the nicest and comfiest drives I had when we went for a weekend trip and our car had heated seats.

I wonder if it's possible to buy heating pads for driver's seat. I guess they will be powered off the cigaret lighter.

In Poland many people swear by those - I think I am going to get one for myself.

Funny you should say that anti as I have been using my microwave heat bag this morning and it makes it a lot more easy to sit down. Without it I was jumping up every 5 minutes.
Well I contacted the physio and surprisingly he rang me back about 2 hrs later. He is going to see me next week. I think a week later will actually be better although I am keen to get started because the 5 minute journey to the dr was agony and the physio is further away. Maybe I will have improved a bit by then.
Thanks all for being annoyed at the not very quick help. I'm sure if I were rich and could afford private physio and quicker access to things like scans this would be better, but it is the NHS for you! My mum is a mental nurse and the things she tells me are terrible. Actually I did talk to her about addictive drugs like codeine and she says you are ok as long as you don't start relying on it to help your mental state, these sort of drugs may give physical withdrawal effects when you stop taking them but that can be overcome by weaning you off them gradually. So if you feel you might be using the drugs to deal with mental problems that is when to worry about addiction.

revivingshower - perhaps ask Santa for an electric blanket

Good idea! Actually has anybody tried one of these blankets, or is a localised pad better? Obviously the microwave bag gets cold quicker and you can't really reheat it in the night.

pavlov meant to say that I am cross for you too and shame your consultant doesn't have your work ethic! Hope its not too bad today.

cowmop hope trip goes ok today. Here's a for when you get back

matilda thanks for all your help and positive thinking

magso I think a hot pad could work on leg cramps as well as back. Yes a heated seat would be interesting to try in this regard.

I am in love with my water bottle, had not considered trying it for leg pain, I am going to try it magso and will report back. I can't see it will make things worse, but definitely may help! I actually find myself spending my day wistfully thinking about the evening when I can lay against my heat pad, with legs up on that new pillow from Lidl! Sad that I am.

reviving I am sure he works hard but he definitely has time off too! I waited just shy of 18 weeks to see him because he was off for 6 weeks! But, I do know that doctors go and do training etc and spend time in far flung countries so perhaps he was being selfless with his time. Ha. the guy at the pain clinic yesterday said he wonders if I got my surgery so quickly after seeing the neurosurgeon because i waited until 2 days before NHS waiting list deadline to see him, he said management probably gave him a blocking (I guess that would actually be his secretary. Re medication, my own GP said the same when I didn't want tramadol, and at first refused diazepam. I said I had seen plenty of clients who were addicted through abuse and he said there was a distinct difference to using opiates and diazepam to get a high and using it for pain relief, as it works for a reason when sick/in pain. Although, tramadol was horrible to come off, physically and mentally. I shan't take that again.

Today. I feel calmer. I am actually in quite a lot of pain. But, you know what, today my mindset feels a little better. I actually walked 'normally'. I said to myself, ok, so it's gonna hurt but so what, it hurts anyway, why bother trying to stop it, just ride on through it. I mean that lasted for 5 mins but for those 5 mins I felt good! suffering for that now but I have decided I am going to laugh a lot more, dance a lot more, and just suck up the pain. I know that won't last more than a day or so but for now. I'm gonna stop moaning that I hurt all the time. If this is as good as it gets, well, it's not going to kill me, I am doing going to die from a bad back so I can't live until 80 like this, got to get through it. (going on a bear hunt springs to mind '...mud, thick oozy mud...' ) and no not taken lots of drugs either

I noticed there are some cats/kittens here. Not sure why?!

antimatter i love those! do they actually massage your back?

they seem to massage gently as you sit on them wearing your clothes and when we drive we wriggle a bit - I'll report when I get one

Well we have heated seats in our car so I tried it and it possibly helped a little. I use a wedge cushion and a back cushion so it takes a while for the heat to come through that lot! Still good thinking. I have a very long journey in a couple of days and I think having a warm seat ( the heat will get through eventually) should help. Less of a worry now anyway! Thanks

pavlov sounds like you have a good attitude, if you try to always move with good posture it is supposed to be good to keep moving. So this may be a good idea if you can do it. Anyway you have to have a life, but be careful.
I have tried the naproxen today, I was a bit wary of it as someone I know said it gave them stomach problems but the first pill I took I seemed fine and my back did seem a but looser but I had another dose later and I felt bad not stomach ache but just rough. I will try it again just in case this was a coincidence though.
I am moving my heat pad around my back and leg at the moment.
magso don't forget those stick on heat pads for journeys too.

we've been having H&S assesment at work and one lesson I took is that most chairs are too deep for me
I tend to perch on them anyway and try to have (at work) plastic step to lift my feet up a bit as I am
short (5'3'')

Anti matter I am short too and find almost all seating too deep and not the right shape generally. At home I use back cushions or supports, in the car (where the lumber support is too high, pushing me into a painful slump) I use a Putnum compact back support. This pushes you further away from the safety of the seat cradle and neck restraint so I guess it increases vulnerability in a crash situation. I find many full length back supports are wrong for me because I am shorter than average. Because I have shortish legs I have always sat on my feet (kneeling) often on one foot only which I do a lot at work (its easier with a bad back as I am up and down a lot). I don't feel comfortable on most settees (except sat along the wrong way using the arm as a backrest) so tend to curl up which is not very good for my back - I think its added to my lack of symmetry. I am trying to force myself to curl the other way (and uncross my legs)!

Reviving, thanks for the reminder, I have added 'buy heat patches' to my today do list. We leave after work tomorrow to start the first leg of our journey.

Cowmop I hope you survive the school trip!

Matilda I hope you are still benefitting from your nice spa week end. Can you reproduce any of the treatments you found helpful. I might have access to a mini spa bath over Christmas but it might be too cold (outdoors).

Pavlov, good luck with the walking straight. Would using walking poles help?

Coop pharmacies have the curaheat back and shoulder patches on special offer! And yes I got some for my journey.

i had a curaheat pad on today! i swear it got me round late night shopping this evening! Although only went in two shops as I have pretty much got everything woohoo I took the children to santas grotto and got ripped off, as DH has had a tooth pulled and didn't fancy going in the giant bauble for photos. Kids went on some rides, including a free one worth a fiver as the very old with no teeth bloke tried chatting me up. I smiled politely for 5 mins for that freebie , and now I am bushed. Thank god for those heat pads, our local is a coop will see if they are there tomorrow.

reviving that attitude of mine is not usual! I sort of seesaw between 'fuck this shit' and 'oh it's all so fucking shit!' Today, I am feeling very christmassy and trying to ignore the pain in my legs, it's just pain right? Pain is a mind thing right? It must be, as codeine doesn't stop pain, it stops how we process it. So therefore, we must be able to do that ourselves right?

antimatter you should ask your employers to look into 'assistive solutions' to provide a proper chair for you. They can access support for funding via various groups or through internal means which they can claim money back for, for disability needs, and it should take into account leg length etc. I have short legs, am 5'33" also, and the depth of chair means my legs don't hang right over normal chairs, so the chair I have takes that into account and can be adjusted in all sorts of ways seat can be moved forward/back for longer or shorter legs, same with base of back, can be moved up and down to fit the lumbar area to where your own is. It also has a little pump to pump up the lumbar area, like a blood pressure thing! (that's actually shit and I have a roll at my lumbar region as well). neck rest is really important too, to ensure you sit in the right position. I initially got a generic 'back support chair' with my first H&S assessment, then they got a private independent company to come and assess me on advice of OH, and they recommended a completely different one, cost £800! waste of time really, as I actually prefer standing up so could do with one of those stools that you sit on at height that get you in the correct position

In a lot of pain this evening. Have had all drugs, tried heat pad so sick of this now. Shouting match with dd earlier as was so grumpy due to pain. At least last day of school tomorrow so that will cheer her up. Owww me back, moan etc

reviving how old is DD? are you able to sleep? sometimes, the only thing I can do feel better is to sleep badly

I have two more presents to buy. But. One of them is impossible! DS wants a robot! I can't find one anywhere! Any ideas?

My dd is 9 she is ok now she sort of understands I was cross as feeling bad. I don't feel like sleep now but maybe if I can find a comfortable position.
Well done for all pressies. There was a robot dog advertised at Argos. What we do for the kids eh? Rushing round looking for a robot!

that dog is awesome, but I am not spending £59 on it! They do a robosapien version, same price, but also a mini one for £10. I shall get him that one! He was quite specific about what he wants though 'a grey robot that winds up' while doing the wind up motion at the back (he is just 4). Shame he didn't tell before I got most of his presents a while ago I thought he would forget, but as the last week or so has gone on, he has become quite obsessed by it! But, least I have found something that I think will satisfy him.

But remembered one more thing to buy. A pair of binoculars for DD, and a particular book for MIL. All done as click and collect

It's hard for the children isn't it? this whole not being able to move stuff. I have so many days of turmoil about the impact on the children. Mostly I dont want to be an unhappy mum as they are my world and make me very happy. DD is 7. She is fabulous and very empathic, she looks after me sometimes and that makes me sad. DS is also fab, forgets I have a bad back, jumps on me or needs a carry and that has been hard as this has been a daily problem since he was two (the odd week or two every 4 months since he was 10mths, but had big gaps of being fine before it finally went properly) and he has been so young to learn that he can't jump on mummy. And some days he can sit on my lap for cuddles, and sometimes he cant touch me or I get cross. mixed messages and a hard lesson for them to learn so young. But I am telling them that I might not be able to do lots of active things, but we can still have huge amounts of fun and sometimes even I can do active things but then need to rest afterward, but that's ok.

We have fairly good chairs with regulation but I still wriggle on them.
I can't believe it there isn't a scanning system/machine which would take into account posture, habits and came up with appropriate chair for us.

Assesment by H&S was rather useless.

Some colleagues in US have standing desks and chair like this

they swear by them

access to work through the job centre for workstation assessments. they are amazing.my assessment was 2011 though, I hope they haven't been cut. Recommendations to employers should be followed although I am having some ahem difficulties at present. If a large company they are unlikey to qualify for having equipment paid for.The assessment is yours and can be redone if you move jobs etc.

I have the adapt 600 chair built to my measurements.I love it.

Thankfully I did manage to sleep, even though I always wake in the night I do feel much better in the mornings. Dd was happy anyway, off to the panto with school so that is good.
pavlov glad you found a robot! It is so sad when you can't carry them, I actually used to carry dd too much when she was a bit old and too heavy for me, so this probably didn't do my back any good. I used a baby sling a lot with her and she always wanted a carry even when she was about 6!
Just going back to the earlier discussion, I am short too and find chairs normally don't fit. At work I am usually standing though, but the problem is there is also a lot of bending and lifting. But at home I am always curled up on the chair or sofa and this is probably in a bad position. I have actually been wondering about trying to get a chair or something for my house. I can't really afford one, what do you all do at home?