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 was disappointed with the pain management as it just wasn't what I expected. I thought I might get something like you describe attending and maybe some physio/hydro. It was actually just one appointment where the doctor read my notes and a questionnaire I'd filled in, said he agreed with the ortho (and I agree he was sensible in not being gung ho with his scalpel!) regarding surgery, reviewed my meds and said I didn't seem depressed and was coping despite the pain so he couldn't do anything else for me. Bye bye!

At the moment I get pain most of the time but at bearable levels with bad/totally shit days mixed in. I'd like to take less pills if I'm having a good run, but have had to increase the dosage of most of them slowly so am not sure which I can take just when needed. I wonder if this is a question for the pharmacist rather than a doctors visit.

I'm very lucky on the help front, DH works shifts and DM comes round frequently as well as doing all my ironing - this in itself is almost worth the bad back! Standing still is guaranteed to wipe me out for days so she is an absolute life saver.

Enjoy afternoon tea!

reviving I've tried everything apart from hypnosis! Anything is worth a try at least once isn't it?

cowmop there is a hydro pool near here and I went to it once when I had a bad back before. It was lovely like a big warm bath, but I found getting back out of my swimming costume hurt my back again!

cowmop oh wow! you poor thing! I have had one pain clinic appt in the entire time I have struggled with back pain, which is nothing compared to so many people here. He offered me an injection but wanted to wait to find out about surgery from my neuro appt the following week and then it never was followed through. My GP has referred me again, but the letter I got for 18th Dec is apparantly a 'follow up' from my initial appt with them in June this year!

cowmop, no wonder you were disappointed! that wasn't a Pain Management course. It was an appt on a pain clinic with someone not terribly useful! It would be worth ringing the clinic and asking if they do actually run the courses. I had to ask for it. The consultant I saw at that clinic wasn't terribly helpful and looked quite surprised when I asked. I think he thought that as a HCP I'd know it all (no, absolutely not.)

Glad you have help. If you look up thread there is a link to a website for the Alexander Technique and a ten minute exercise called Constructive Rest which some of us have found helpful.

I agree it get confusing about which meds to increase or decrease. I basically take the anti inflammatories, gabapentin and amytriptiline at a set dosage then I increase or reduce the codeine and tramadol. However, I've noticed that if I feel okish and need little or no codeine for most of the day the pain will be really severe by the evening. It just catches up with me..

reviving, never tried hypnosis! might be interesting. I'll ask at the clinic next time. Wonder if it's available on the NHS? No sign of the Lidocaine working yet. They were very non specific about when or how much benefit I would expect. I believe it's good for fibromyalgia pain.

I do apologise for the crisp ending to my post...DH called me for help, I pressed 'enter' instead of leaving it. I had more to say and I got pulled in to help with dinner! I will finish it off later as now dealing with two tired hungry kids as my roast took much longer to do than planned!

It tends to be the codeine I mess about with as well matilda I also take pregabalin, Nefopam (my GP's just upped the dosage to try and control the nerve/sciatic pain) and Naproxen. I used to take Tramamdol as and when and did find it one of the better drugs, but I started having seizures a couple of years ago and they can't be taken with the epilepsy meds I've been prescribed - told you I rattle!

I'll have a nosey at the Alexander Technique, if it's anything like Body Control Pilates I could give it a go as I really enjoy it.

pavlov I had to really fight for my injections as the trust I'm with had stopped funding them. I only found this out after waiting to hear from them for 12 months as I was expecting a bit of a wait. In the end I went to PALs and ended up on a ward with 6 other ladies who had all had similar experiences and wait times. Not one of us had been written to to say the treatment wasn't available or offered any advice. Makes you wonder how many people slip through who might have benefited. Hopefully you'll get yours soon.

reviving I hadn't thought of that! It would definitely be no good for me on the days poor dd has to help me get my knicks on!

I can't even remember what I was going to say earlier in my other post I read it through, and completely forgot what I was going to say.

Had two days of greatness, low level pain. Woohoo! And what does that mean? try to do too much. including pulling out a broken kitchen draw full of shite. Not a good idea. now, searing pain down legs. I won't learn eh?!

Has anyone tried magnets? I bought a magnetic belt, to use with ice/heat pads, but they don't fit it the magnetic belt is allegedly good on it's own, but I am suspicious about it! Not read a lot of actual positives about magnets, suggesting the level of magnetic pull to make a difference is too much for a human to withstand, and saying if it helped blood flow that well, an MRI would not be a good idea oh well.

I did, however, get that cushion from Lidl matilda the children love it, it's perfect for my 4yr old, who was sent home early from preschool sick today (he is not sick, he had a runny poo. he is absolutely fine) and lounged on it. I have not used it yet, but it looks great!

I did buy the backpain hypnosis download and as I thought it was very relaxing to listen to, even though my back was hurting a bit at the time. I think it will certainly help a bit and over time may help to learn to relieve tensed muscles that may aggreivate pain and learn to release some of the cramping. It is also supposed to help you lessen your perception of pain but not sure about that. It is not a magic cure but I think it will be helpful. They also had some other titles that might help others such as manage chronic pain and relief for neurological (sp) pain.

Also I got Sarah Keyes back sufferers bible today and have started reading it, it is a bit hard going for me poor old brain, even though it says it is in everyday language! Well it is, but I guess I have a lot to learn..

I have a copy of that book somewhere. Haven't looked at in recent years so cannot remember much, but I based what I do to try and keep mobile on it. Probably time for a reread I think!
I have a low currant therapeutic devise which sticks to the skin. I am not sure if it helps or not. It certainly doesn't help with pain on an immediate basis, but might over time. I think it is supposed to help with healing. I am still not sure but I tend to use it when in trouble.
Very stiff and sore today and coming down with a cold, so extra headachy.
I will be interested if your hypnosis tape works. I was given a CD as part of my mindfulness course (from the cronic pain clinic for CFS etc). Again I am not sure if they help, but use the principals sometimes - but not every day as I should. Its a pity we can't do a proper trial between us to see what combination helps most!

Sounds as if the hypnosis and mindfulness things are very similar. Problem is it helps when I'm lying on my bed and not in extreme pain but no use whatsoever when trying to buy food in M&s yesterday when so gripped with pain I was reasonably happy to call it a day and die. Gladly that didn't last but it's those everyday situations that are so hard to cope with. I can get it under control lying on the bed but that it hardly living...the cause of the sudden flare up? A bowl of soup in a pub with a friend in a pub.

I bit the bullet yesterday and made the initial phone call to apply for PIP which has replaced DLA. When the form arrives I'll be looking for all advice in filling it out. I can do most of the things but spend a fortune on additional help and endless favours from friends. I just haven't fully got my head around disability. It's not all about wheelchairs and very obvious problems. Look at me and you'd think there was nothing wrong.

Sorry. Rambling. Have a good day, all.

I think you are right about hypnosis/mindfulness used regularly they probably do help overall and might help you reduce need for drugs when you are in mild discomfort, perhaps help you tire a bit less quickly that kind of thing. But it is not going to get rid of that really intense pain.
I have a friend a bit like you matilda with m.s she is youngish, looks fine but sometimes struggles to walk so has a blue badge for her car. She says she is constantly getting rude remarks and looks about this and it really upsets her.
Yes definately get that PIP these disability aids are so expensive for one thing. I can barely afford my extra prescription id like to buy a few of those aids just for a few weeks but of course that would be impossible, but luckily I hope to be well soon. Then there is travelling to medical appointments and things. But the expenses really do mount up so you do need it. All I know about the forms is; if one day you can walk say 50 m and another day 500m always put the lower amount when asked how far you can walk etc. I learned this from a book about how to be a carer.

I agree the mindfulness CD is only useable when doing nothing in a comfortable condition- not walking around doing things that need to be done like shopping. I think the micro currant devise just warms everything up.

matilda when you fill in your PIP, you have to 'take away' all that additional support from friends, family and others, that help you keep on managing day to day. You need to then say to yourself, once you have stripped that back in your mind 'now, without any of those favours, additional help etc, can I manage day to day'. PIP is to aid independent living. It is not recognition of a disability in itself, it is a recognition that your disability affects you physically and incurs expense (although PIP has been slated, the principle of financial support to those hugely disadvantaged by disability is the same principle).

The best way to do forms like this is to step away from it being 'you'. and answer those questions as if you were doing it for someone else. what would you tell them to write? Would you tell them they are managing fine, would you think they tended to minimise the impact of their disability? I fill forms like this (but not this) most days at work, I do risk assessments relating to people's behaviour etc every day and have to strip back my assessments and evidence it all, think in ways that are similar to these forms. I also help with ESA forms, housing forms etc where I need to get someone moved from bottom of a hostel waiting list to the top. It means being really, really clear about how their needs can be met. So, what I am saying is: ask me for help with any questions! I am quite sad in that I love this kind of thing. And, allow a week to fill it in

And you definitely never ever ever say you can walk 50m. I am not sure how the question is worded in PIP, but in DLA it is worded 'xM without severe discomfort' or something like that. Well, in that case, the answer would be, for you, 0m for example. My understanding with PIP is that they have reduced the walking level to 50m or less, and you need to be awarded 12 points to get the mobility element. Do not consider that because you have a rare day where you are able to walk more than 50m that you can therefore do it. You need to say no to that question if you generally cannot walk far without any aids.

I have seen a scoring sheet for PIP to give you an idea how the questions are weighted, helps you think about how they will view the form. it's very much like a job interview - You are not being untruthful, but are emphasising the areas that are relevant to that application, concentrating on the areas that get you more points and a better chance of that job, that you know you can do but have to prove it.

I have had a few good days. night times are not good. I continue to double dose my anti-inflammatories, so I guess that inflammation is a big cause, which gives me hope for the injection working, if they even offer it to me this time.

I had a really good day Wednesday, and maybe slightly did too much, it didn't feel that much at the time iykwim but I sat downstairs all day and carried a few lightish things about even when it was getting a bit sore. Thursday I felt a lot worse and I had to reduce my codeine as my next prescription could not be picked up for me until today and I was rationing them but I can really feel the difference on the lower dose. Dh can pick up my next prescription today and I will go back up to 2 30mg at a time. I am a bit worried about whether I will be in pain a lot if I have to stop taking them before I have improved, also there is a worry about cost as I have to pay for them.
I had to give up on my hypnosis tape halfway through yesterday as I was feeling too uncomfortable to relax. But I will keep trying it I think you need to be able to listen to when not in pain though which might be a draw back but hopefully when I get the right dose of codeine I will be ok.
I also think I will need to take more rests lying on the bed even if not too tired and not try to carry anything if at all uncomfortable. Its hard because we are all finding it difficult with me not doing my usual stuff, dh works long hours and its hard for him to fit in the housework and dd wants me back to normal and gets a bit upset. I have realised I normally do too much for her and she can be a bit lazy though so going to work on getting her to be a bit more helpful and independent.
One good thing is that I have so far lost 1 stone in weight (in 3 weeks). I know not a very healthy way to do it but I do really need to lose weight and have to lose a lot more, and hopefully if I can keep losing it will be a big help to my back in future.

hello ladys i have cauda equina due to accident ,i was on a pub balcony and it fell 12ft to the concrete floor. [ouch] broke my femur had a nail pit in my leg also had a pe due to been bed bound.also broke L1&L3 bones in my spine had a laminectomy [sp]was in hosp for 9 weeks could not walk wen i came home my dd had to wipe my bottom for me ,now i can walk short distances ,sometimes use one stick but now the cold weathers in my backs is sooooo painful. [ps sueing the pub they have admited liability] but to be honest id give it away ,its left me with perminant nerve damage and probs whith my bladder and bowel its 10 months today since i had my accident but still along way to go they say 18-24m befor i get back on my feet x

ilovesprouts, you are not alone. Hopefully you still have a long way to go in terms of recovery. I have some mild bladder issues due to nerve damage. Hey, the world's still turning. It's crap, though and your problems sound much worse than mine.

Lots of us here love our hot water bottles especially now it's colder. Heat patches, too. Then the drugs, of course.

Long term physio really helps me. Half massage (bliss), half hard work.

Hope you have good support and a good lawyer.

thanks i have a very good lawer .matildathecat i was not the only ione who was hurt my 3 friends was hurt also the pub land lord too.

Hi sprouts I sometimes feel a bit wrong to be moaning about my common or garden bad back when there are people on here with really bad long term conditions like yours. But everyone has been lovely and helpful and it does help to have a moan. Also it seems like the same things in different combinations help most back problems. With a long term problem it is just finding the inner strength to keep going and finding ways to enjoy life so I hope you are managing that way and that the money when it comes will also help.

Whilst rubbing some ibuprofen cream into the sore area of my back I felt a smallish lump, not near the spine but in the middle of the sore left side of my back. Is this related to the pain? I read you sometimes get knotted muscles and things that can be felt? Should I do anything to it?

If you can stand it you could get a tennis ball then stand against a wall with the ball between your back and the wall. Then slowly roll yourself around using the ball to massage the sore areas. It can hurt like hell if you get it on a know but really works. My old Pilates teacher used to get us doing it in class. Lots of bizarre moans and groans!

It's basically a homemade deep tissue massage.

I'm lying on my bed trying to summon the strength to apply festive adornment to the house. Hope you're all having a good day.

Get it on a knot.

im doing ok will be long slow process but i will get there. i can see how far ive come since april. its the numbness thats the prob but im ok x

I am guessing that you figured out the very longwinded post was mine? You will probably always tell it's me if I name change as I talk toooo much

Remarkably, a very bloody good week pain wise. Not sure what's going on, and suffering a bit today, as alcohol is great for relaxing things, but seems to increase pain the next day not sure why, but had a work 'do' last night, drank lots of wine, didn't fall down drunk, or make a fool out of myself either, by attempting to climb onto tables or dance or something else that would see me stretchered to A&E . So, I know that things are still not 'right' as there is still pain there, mostly in my legs, and I can't get into sitting without using my arms to lift me down (as found out when attempting to sit down with a sleeping baby in my arms and nothing to hold onto with the free hand, the mother of the baby had to help me sit down to stop me falling down with baby! But, the scale of pain is enough that if this is how it is, although pain free would be better, I could live with this, if I have to, with no more surgery. But, I do get so very very tired now.

Can I ask a question about the injections? I can't remember when I had the last one (caudal injection that time) whether I could go to work the next day, as it hurt for a little while before working (for like two weeks). I am seeing the pain clinic on tuesday and while I am not really anticipating them offering it to me there and then, they did last time, and so it's possible they will this time. I really would prefer to have it, as the last two christmases I have not been able to stand straight, and I would love to be able to actively participate in this year, if it sorts out my leg pain, I would be so happy, even if it only lasts a few weeks. But. I have a LOT of work on next week and my manager has just cleared my diary on wednesday for some urgent work to be done after I complained at feeling a little overwhelmed, and then finding I am officially at 125% in terms of my workload! which actually means more like 150% . I had told him already that I might need the wednesday off, but when we met yesterday to discuss my workload I forgot all about the injection and so my week is stacked. But, if I don't have the injection I will have to wait weeks for another appt. If I have the injection on tuesday afternoon, can I work on wednesday morning? Sitting down for 5 hours....

ilovesprouts oh wow how horrific for you you are very welcome here. You will get fantastic listening ears, advice, support, somewhere to complain about how shit it all is, and sometimes we have fun too MN has been my place of sanctuary through my own struggles with back problems, which are nothing compared to your situation, held my hand, given real advice, listened to me go oooooooon about stuff. And let me talk. And I do that quite a lot...

matilda how are you feeling after a few days of the lidocaine injection?
How is everyone else?

reviving did you try the tennis ball massage? did it help?

Hi all, I'm off to a spa today, just myself and my very dear friend for an over nighter. It's a present to her for all her support for the last 22 months. Fuck, I can't believe it's that long. So I'm now exhausted with pre spa prep!

pavlov, no! Surely not injections on the same day!! It's customary to have a wait of 4-6 months isn't it?
I've had several injections and got slightly different advice each time but basically you should be fine for work next day. Do suggest not sitting for five hours should you wish to continue your excellent run of luck.

I've got loads on this week. Managing pain, activity and calorie consumption is a full time and arduous task. I also get absolutely exhausted I'm sure it's just that every single thing we do requires soooo much effort even if we don't realise. Thanks very, very much for your advice re the PIP claim. The form hasn't arrived yet but I will be asking for advice. There is a chart showing the point system on the CAB website so I will paying attention. Do you even get a car through Motability? I doubt I'd qualify but hey, I'm gonna try. I also have a pal who has a disabled son and has a lot of experience with 'the system'.

sprouts, your accident sounds absolutely horrific. You must be so traumatised. I hope you get a massive payout, but more importantly that you continue to recover. Are you working etc? Also, how are the others? Sorry, I'm just being noses but you have my total sympathy.

See you all later. Don't worry, I'll be fine with all my pampering .