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 I'm hugely jealous of you having a spa day. Hope you have/had a lovely time. The one and only time myself and a friend tried this we ended up going to a place in Birmingham. My mate had got the wrong address so having schlepped across the city we ended up running in the other direction so we could make our appointments on time. Then running back across to get the train home after. This was cancelled and so we ended up crammed on an overfull train sweating like pigs. Ahhh, it really was the most relaxing day . To be fair we were both very early twenties and a bit thick green.

I'm glad you're having a good run Pavlov. It's great to get a break from the intense pain, even if the background hum is still there. Here any good days or weeks tend to be whispered about incase the pain fairies hear!

sprouts it sounds like you're having a right old time of it. I hope you're recovery is as full as possible even if it is a bastard at the moment.

I'm having a bit of a fed up day myself. Upto a couple of years ago I had my own business buying old Land Rovers from all over the country, and could spend whole days taking them apart, cleaning the parts and shipping them off. Today I made stained glass window biscuits with the kids for all of twenty minutes and now I'm buggered. It's a real pisser. How can you go from a fit twenty something with a manual job to a drug dependent wreck in just a few years? It worries how much I need the pills and that I'm on the maximum dose of everything and still struggling.

Sorry, I shouldn't moan and I know there are lots of other people in much worse positions than I am (and am reminded of this constantly when reading MN). I just wish I could make some sodding biscuits!

oh yes to not having the ability to do what we used to. It really sucks. We have just been on a train journey to the North Pole with Santa. My DD aged 7.5 was desperately upset that it was not the North Pole, and that, although she knew it was not really going to be the Real Actual North pole they did not pretend to make it look like it. She is starting to lose some of her belief in things but wants to believe, and is happy know it's pretend if effort it made. She felt properly duped and was in tears! Glitter tattoos made it much better though but, I am wiped! Leg pain has increased a lot, back is a bit stiff but nothing huge but I have mountains of housework to do and my energy levels are zero. Not helped by not sleeping pretty much at all (partly pain at night, partly a DS who has a cough/wants to snuggle with me all the time night and day). I think I am suffering from my night out, party animal that I am (at home before 10pm!). Once upon a time I would be up at 6am, clean the house, make stuff with the children (cakes, art), go for a walk, go for a bodyboard, get stuff ready for work/school. Now, I can't do that. And this time of year, I need energy and no pain!

matilda so jealous! spa. Aaaah that would be so lovely. I do go to sauna occasionally, but it's too manic with Dhs new job to get time. Hope it's lovely and get properly spoilt! re Motability, I think PIP mobility level is either you get it not? DLA is low/high level and high rate is eligible. So with PIP if you get it at all you should be eligible for Motabiity. My understanding is that you have to have 1 year of award to be eligible, and as the lease is 3 years, ideally you need 3 years, or at least be confident that at the end of the 1 year it will be renewed as there is no option to purchase the car at the end, you have to give it back. Ford do reverse sensors as standard in their motability cars, which I love the idea of as I can't usually turn around to look out of the back, I rely on my mirrors to reverse. And you can get automatic, and have it adapted if needed to make it better to drive with your disability. A brand new car is soooo much easier to drive with back problems than an older car. I had a hire car from work a little while ago and it was so lovely to drive, gears were not tight, gear stick and handbrake were higher up, pedals didn't need pressing so hard. Lovely.

You are right about the injection. I am not anticipating getting it on tuesday as that would be too efficient! But, I know if I don't prepare for it workwise it will be offered and I won't be able to take it!

cowmop I think it was you who said about a friend who gets looked at funny as she doesn't look disabled? I know two people who have blue badges due to their conditions which are hidden, other than through back problems. One has MS, and largely this is under control, his DLA level is care component as his mobility is relatively good (for now) but he cannot control his bladder and so he needs to be able to stop and go to the toilet at any time. This means he doesn't really go out, but he has a blue badge to give him more freedom to get out of the car quickly. He gets comments all the time about 'not being disabled'. I have another friend who has Chrones disease and despite no obvious mobiity issues he also has to be able to get to a toilet quickly with no warning and so although he doesn't get DLA he is eligible for a blue badge. His attitude is much more 'fuck you' when people make smart comments just shows that there are so many reasons people's conditions mean they get the 'privilege' of a blue badge, but it makes so much difference between not going out, and going out occasionally. People can be so bloody rude though.

Hope everyone is having a reasonable day

im just hoping my cauda is not permenant had it since feb/march ,i only went to the bloody place for my dinner still feeling very bitter ,

Matildathecat one freind broke her wrist had 3 ops so far ,another had to have her kidney out and another smashed her face in and broke her arm and still needs more ops due to damaged eye socket also she has some brain damage x

Bloody hell sprouts, that's a lot of lives changed in just a few seconds isn't it? I hope someone will be held responsible for it and that everyone involved is ok in the long term.

omg sprouts that's horrendous. Utterly horrible, poor you, poor your friends. Good luck with the legal stuff. re nerve damage, I was told by my physio that any nerve damage still around after 18 months of accident/surgery/injury/incident would probably be permanent. I was told this though not from the time of my prolapse by 18 months from surgery, but I suspect it's from the time the nerve was trapped. I really hope things improve significantly for you, but in the mean time have a we use these a lot here

Does anyone here get cramps? I can't figure out if it's linked with nerve damage. I have always got the odd cramp in my toe or foot, in particular one toe that sort of dislocates with the cramp, goes out at a funny angle. But, since my back has been bad, this toe in particular, also my foot, and my calf, cramp regularly, almost daily. Not so much in my right foot, always always in my left foot/leg. Wonder if it's related to change of movement/blood flow or something? It bloody annoying that's for sure.

And. This is something that people will have read about if they ever read my other moaning threads about my poor ol' back. But, does anyone else ever get flu like symptoms just before an 'episode'? Prior to surgery, this was almost always a sign it was about to 'go', like a few hours before, flu like tingling/pain through my entire nerves, not just legs, but in my hands too and I would feel a little unwell. Then, within a few hours of that happening I would do something ridiculous like get up from the sofa or sweep rice crispies from the floor, I would be in agony, unable to stand straight or move. I have never figured out why, everyone professional looks at me like I have lost the plot, but I had wondered if it was the gel type stuff leaking from tear in disc. I have not had it since surgery, even though my back has 'gone' a few times, and I have been in agony, the same pattern has not followed and that would make sense as the 'tear' was cut away I think (although technically, wouldn't that leave a 'hole'? or do they cauterise it?)

Except today. Flu like feeling (but not ill, not actual flu, just that nerve pain of flu, if that makes sense?) increased back and leg pain. Just, not gone fully yet. Praying, praying it is not a sign of it going properly again. I can't take this week off work. I cannot cannot cannot put the work I have this week onto colleagues, just before christmas. It would be so horrible for them, and my name would forever be Mud.

But, I am going to keep chucking it out there to you back sufferers, maybe one day someone else will come along and say 'it's this! you are not mad! I get it too and this is why...'

I say medical professionals, I have not fully explored it with them other than tentatively with my GP and a physio, who looked at me quite perplexed and I have never mentioned it again, for fear of being seen as talking complete rubbish. Which I know I am not.

pavlov I think I'm with you on the flu/feeling rough type thing. I always assumed my back was worse because I'm feeling rough, but you could be on to something!

I always feel slightly fluish and generally run down and utterly exhausted when I'm in a flare but mine is inflammatory arthritis mixed in with some osteo.

Why oh why, oh why is my back so uncomfortable downstairs during the day that I have to keep going back to bed for a lie down, but during the night I can't get comfortable no matter which position I lie in and can hardly sleep. This despite all the painkillers?

reviving It is the law of sod!

I hope you all had ok weekends. Mine was a bit difficult as my post above showed! Today I feel slightly better, managed to walk to the car and practised sitting in it. Hurt but managed so arranged for dh to drive me to dr but then found out there are no appt till after Xmas! But I am going to speak to my dr by phone hopefully tomorrow.
Have been trying to gently exercise back by doing the exercise in back book where you pull knees to chest and gently rock. Even this is difficult as it is hard to get my knees up. But I have been doing alternate knees if I can't get both up. Any advise on this it looks like I won't see anyone about my back till after Christmas so I would like to carry on trying to exercise, I have the book pavlov recommended Sarah Keyes Back Bible. I am also walking about the house quite a bit when I feel ok.

this is wat happend if anyone wants to look the place has admit liability tho i will never set foot in that place again :( we have not had anycontact with the place not even a sorry or hoew are you all .

Oh my, I have the cure for us all...we need to move into a luxury spa! It will make you feel so lovely you won't care about your silly old back.

So fab until I saw the bill and almost had a heart attack on the spot. Oh dear. Maybe once every ten years or so which leaves quite a lot of days I'll need to manage as usual.

reviving, you sound as if you are really making progress. It's slow but you do sound a wee bit better. Here are some basic exercises

www.nhs.uk/Livewell/Backpain/Pages/low-back-pain-exercises.aspx

But personally I wouldn't do the extension one. If you've got a disc prolapse it will probably pinch it and make you more sore. Rolling the pelvis gently and gradually rolling into a bridge is a great mobiliser as are gentle roll downs with soft knees ans the knees rolling side to side.

I'm really horrified by your surgery. Ours guarantee a same day appointment if you call first thing. Is there any way you could see a private physio a few time? Likely to be more use than GP. Re your meds you can ask for more on each prescription if you are needing to renew frequently. To make you feel smug and abstemious I get 200 cocodamol and 300 gabapentin each time. I've also got a prepayment card which is cheaper.

sprouts, wow! how totally awful. Are you still in a lot of pain? I hope you have had all the best possible referrals. If going down the legal route you can charge it up the claim. Do ask your lawyer if not sure. I'm also going down this route and am accessing private physio etc.

pavlov, thinking logically I guess an increase of inflammatory cells circulating is going to make you feel unwell? Need to do a bit of revision , but seems a reasonable conclusion. Many times I've had symptoms that don't quite fit but doesn't make them any less real. When my disc was dripping I got vile pelvic sensations but only one doctor ever made the connection.

Thanks miranda I am glad you enjoyed the spa. What we all need is to win the lottery!
i will try the exercises. I don't think i can afford the private physio but will have to look into it. My dr is very nice when i do speak with him but i have never met him in person. But he may give me enough pills till after Christmas hopefully.
sprout i can't click your link but it sounds awful. How do you get on day to day?

Well the dr said he would squeeze in my appt but this meant I had to take it at a difficult time. Dd carol concert is only 40 mins later. I can't sit for long so was going to have to miss the concert, but now am really worried this will all go wrong and am scared of being stuck waiting somewhere in pain. I have had a bit of a difficult day pain wise. I'm just so uncomfortable I can't sit still. Hopefully this will go ok and the dr be able to offer something helpful. Also sad I will miss concert.

reviving sorry about the concert it sucks. Not trying one up manship but I've missed, among other stuff, my son's graduation and my best friend's 50th birthday party.

If you have time, please work out exactly how much of each med you are actually taking so your GP can give you enough. Sometimes they prescribe on autopilot IYSWIM. I'm really astonished it's the first time he's actually seen you! You've been in severe pain for a good while now. Please explain exactly how bad things are and push for a physio referral and an MRI.

If you are in agony when you get seen that's no bad thing (other than for you). Good luck.

sproutscan you re link? Keep chatting here, we do understand. Hope your pain is under control and your nerve damage not too catastrophic. I totally get your rage at the hotel's indifference. They might have been instructed by their lawyers not to contact you. I've had a similar experience and have found counselling quite helpful. I've learned that I was suppressing my rage because I was scared of how huge it was. What I need to do is to let it out and realise that it won't kill me or consume me. In time it really will lose it's strength a bit like a storm blowing itself out. Hope that makes sense. You're still left with the damage, though, unfortunately.

pavlov hope your appointment went well.

cowmop, what an interesting job! It is indeed so hard to accept let alone like our new lives.

well I already saw the dr it was quick! It absolutely killed me riding in the car. The dr could see I was having problems walking anyway and couldn't lift my legs up on the couch. He said this is sciatica. He has given me naproxin as well as codiene so I hope this will help me. The physio service here seems a bit weird you have to ring in, then they ring you back and talk to you over the phone, then either send you exercises in the post or a further appointment if necessary. So they certainly don't rush out to give you a massage lol.
i do feel a bit bad moaning on here when everyone else is probably a lot worse than me! But it does help to moan and you all give very helpful advice.

can anyone copy my link for me its further up the page thanks x

i can walk short distances but then my back/hip starts to ache wen i sit for a while getting back up my legs/backs stiff and the numbness ive sort of got used to it now ,like i said in my other posts i could not walk wen i came home so all ive done really well i could of been paralized !!.

reviving the physio system is the same here as well. After a chat on the phone I got an appointment pretty quickly, but the lady I saw was a bit pants and I've ended up paying privately, luckily DH's work have cover upto a certain amount per year so this goes a long way towards it.

Oddly, I'm lucky on the prescription charge front since I developed epilepsy as it's exempt. At first I tried to pay for the pain meds separately thinking it would only include the epilepsy medication, but no, it covers everything I take (at the moment 30+ pills a day.) So every cloud has a silver lining it seems. Even if it does come with the down side of seizures and not swimming in the deep end!

Think of me tomorrow, I've rather stupidly agreed to help out on the school trip which leaves at 9.00 and returns at 6.30. I was having a good week when I said I'd go, but couldn't stand long enough to do the dishes tonight. Should be fun. I don't know about everybody else, but I tend to do this a lot. I think I'll be fine and will manage and will indeed have to manage tomorrow, but will pay for it over the next week or so. Especially my ears which will take an almost constant stream of "I told you so's" from DH! The thing is you just want to do as much as you can with your children don't you? And for them to carry on regardless, not have to keep thinking of your limits. One day I might actually accept my new limits and will probably be better off for it. Just not this week!

Hope everyone is ok today and that you're all nearly ready for Santa.

reviving I bloody hate that Doctors say 'it's sciatica' like its a condition. It's not! It's a symptom of something else. It means 'your nerve is being trapped/irritated/pressed on/touched/etc' and that is caused by something else! I am not a doctor, but a common reason for this is a prolapsed disc, or something else within the spine that is impingeing on your nerve. It's great that you have some meds, but you need an MRI! I am sorry for being so angry, but it drives me mad, the very least he could do is give you some pregabalin/gabapentin/amitriptyline - these are nerve blocking painkillers and can do absolute wonders for nerve pain, unlike codiene, which ime does fuck all for nerve pain. . Sorry. I ranted. If you don't get any improvement over the coming two weeks, or, tbh by the end of this week, insist on an MRI. Nerve entrapment by disc problems can resolve itself without surgery so I don't mean to get you worried, it might be something that you recover from within a few weeks, as the disc goes back, but you need to know what is causing it so you can treat it. There is just no point treating the sciatica symptom without addressing the issue that is causing it, conservatively or not conservatively.

cowmop wow hope it's not too horrendous for you! school trips are hard enough as it is without the added trouble of pain in the mix.

Pain clinic appt - pissed off. I won't even go into it. You all know the outcome. Fuck all. Can't do anything until MRI result (which, btw is sitting on my neurosurgeon's desk while he has been away, and is waiting for him to dictate a letter to me, which won't be written until after the christmas holiday period as the secretary is away from when he returns to end of December. I am being referred to physio for some hydrotherapy. The physio lead I saw did say longer term if surgery option reaches a dead end I could look at having some kind of stimulation therapy like a spinal cord stimulator? Anyone heard of that? It's inserted into the spine or something. Anyway, that's some time in the distant future in the mean time, I shouldn't double dose naproxen, and I should consider coming off diazepam in the long term due to it's addictive properties. HA! I have taken a total of 12mg diazepam since September!!! Some of my clients are on 20mg-30mg per DAY (some of these are prescribed, some are not --some take even more than that) ! I don't think I have to worry about being addicted just yet...ok, so I went into it. BAsically without MRI and while neurosurgeon is involved they won't touch me. Apart from a swim in a heated pool.

And my pain has increased lots today in my legs. Lots. And Lots. And I feel sick and flu like (I forgot to mention that previously when I got this flu like symptom thing with pain, I sometimes threw up as the pain increased, hope not today).

Mostly. I am fed up. But, also feeling happy (can I be both? Is that even possible?) that I have mostly done the christmas present shopping thank god for amazon I actually ventured into a shop today. Not a good idea as I spent so long wondering around I spent too much. But even stocking stuff is bought now. Just got three more presents to get then completely done apart from food shopping. DH's job that.

Least I can go to work tomorrow. YEY. Now going in all day so hours and hours of risk assessments and sitting down. Boo.

pavlov that sounds predictably shit. You'd think there would be a secretarial pool or someone who could cover for holidays to keep things on track. I've heard of the pump thing, but not read up on it much, definitely worth a google at least. I'm not sure what we are expected to do apart from rely on painkillers, the pharmacy assistant where I go keeps warning me off taking codeine as they "can be addictive" and she "knows someone who only takes them for the buzz". I want to say, that may be true, but it's been several years now so a)if I'm going to be an addict it's probably too late and b) how the chuff do you expect me to manage everyday life? and c) in combination with the other pills I take they barely take the edge off, let alone give me a flippin "buzz". I also take the minimum I can get away with as it sounds like you do.

Sorry your pains bad today, must be something in the air! At least you've got the majority of your shopping done, where would we be without the invention of Amazon, eh?

that's so true, even if I were an addict it would only be a problem if I were needing to stop taking them, and I can't see that happening any time soon

Amazon are also in my bad books. I bought some watches on a whim for family members, meant to be fun. But they are aimed at teenagers but very clearly huge MAN watches. FFS. So, gone to return them and they want me to pay a total of £16 to send them back! Almost half the cost of the watches. There is no option to return them myself, as in no address etc as I can send them all back for less than a bloody fiver. Not that I should even have to as it's their marketing fault (or the company they are selling for but it's being fulfilled by amazon so their fault).

GRRR. And it's going to take an aaaage to get the refund so not before christmas, And I thought I had done so well

Jesus, what does it take for Left hand to speak to Right? So furious with the way we are all treated.

No GP appts.
GP offers nothing bar drugs.
Physio won't actually see you.
Surgeon offers MRI but not the result.
Pain clinic say, too many drugs.
They want MRI result.
Try warm water...

Meanwhile we suffer. Employers start by being sympathetic but this wears thin. They lose patience. We suffer....

Though it will be scant reassurance to you, I do now have people whom I trust and are helpful. It's taken a long time. I'm sensible enough to manage my medication. If you understand the function of the medication and how they help so can you. These so called experts have probably never had worse than a headache.

I've had Spinal Cord Stimulator mentioned, too. It seems to be the final offering from the medics box of tricks. I mentioned it to the Expert Witness I saw a few weeks back and he said that he had never seen one work successfully. I'm fairly certain I won't be accepting this offer. Sadly, pain management can only go so far. I'm starting to believe that the mindfulness approach is, alongside the drugs a better way to go. I, anyway just don't want any further surgery.

cowmop, good luck! Have fun. I know exactly why you volunteered; you want to be normal. Have a good day. I think this counts as a 'sod it' situation. You know it will hurt but you want to do it anyway. Hope you can have a totally lazy evening and quiet Thursday.x

Oh and I got cramp in my toe/foot/calf while driving today. In the dark. In the rain. That was NOT fun. Luckily I was able to pull over safely. But, wtf!

I think maybe i need to drink more water. apparently cramp can be a sign of dehydration. I drink too much coffee it has water in it thats what i tell myself