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)

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

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

reviving I agree with mouldy about being signed off for longer. If you are getting tired and increased pain with a bit of moving around, can only sit on the loo for a few minutes without pain, and are taking high levels of painkillers, and your job involves bending, lifting etc, then 10 days off is NOT enough. I was off for up to 5 weeks one time that I had acute pain. You cannot put a time frame on it, and if you go back too early you will only end up back off again, and maybe for longer. I know it's really hard not fretting about impact on work, I am there every time I take time off, but your health is important and you have to get back on track.

re: constipation. Please do get on top of this now. prune juice is fab. drink lots of it, and lots of water and if you have to take stuff from docs, do so. If you don't, and you get too 'full' you will start to feel quite unwell. I had this a little while ago, before surgery, and I left it too long before addressing it, and the outcome was an emergency doctors appt, and a prescription for a diaretic which was like, as someone put it 'taking a sledgehammer' to the problem I thought I was going to die. No shit (excuse the pun) It was quite unpleasant. So, do work on that now.

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

Reviving, it's so hard to get your head round but you aren't fit for work. Of course your GP will continue to sign you off. I remember this feeling so well. Sounds really lucky that you've got another two weeks hols so that gives you almost a month to relax and take it very slowly.

That's the thing, everything happens very slowly.

Re bowels, I recommend lactulose which you can take up to three times a day. It softens things so easier to pass. Codeine leaves the stools very hard.senacot moves things so it's ok to take both of these together. If you're really impacted which after a week you must be get some glycerine supposition from the chemist which tackles things from the other end! You can buy all this over the counter. I take a slug of lactulose every night.

Ameet gave us all some very smug advice about posture. If only we all stood up straight we'd be fine. Not sure about selling, quite likely.

Thanks so much everyone I appreciate it. I was in a lot of pain when a lady from work rung earlier and got a bit upset even though she was really nice. I was upset to let her down but also I was worried dr might say i can go back while I was still in a lot of pain. But think I was worrying too much probably because I was not feeling well. I do hope can get over this initial painful stage then start doing some exercises to get myself fit.

Another frustrating day. I get woken up in pain about 4 ish took painkillers and groaned for a while then ended up sleeping most of the morning. I did manage to get downstairs several times today but I cannot find anywhere comfortable to sit or lie down. In the end went back up to bed took painkillers and fell asleep again. By evening my leg felt very weak. At least i am moving more and getting up and down stairs.
Have ordered Sarah Keyes back sufferers bible so will look at that when it comes.
Hope you guys are all doing well.

reviving have you tried:
Lying on your side with your knees to your chest, or with one knee toward your your chest, to stretch it all out. I guess foetal position. But with one leg not both. It might hurt to start with but it might help long term.
Lying on your back with several cushions under you knees so you are the semi supine position that matlilda spoke about (constructive rest) those positions were the best positions for me. And still are now (but didn't even knob until Matilda posted that one was a proper helpful position!)

Ok here. I am finding wine helps. Not good in the mornings though

Some bastard rang our door bell at 5am! I didn't get up. I lay there thinking if it were important they would ring it again. And I would then send DH down! I also woke with a coughing fit from this lingering winter cough! So, despite ds not creeping into bed as he normally does, I as awake at silly o'clock. The problem with that is then I feel pain and can't get backs to sleep. Argh.

Hope everyone Is having a nice lazy Sunday. I am managing by using heat pretty much all the time and not breaking my painkillers and anti inflammatories. I bought some of those heat patches and wore one at work, fab! But I did boil slightly as the office is not anyway

And keep an eye on that weak leg reviving if it gets worse think about going to hospital. Especially if you have numbness with it.

reviving, it was after a few nights of being awake and in bad pain from about 2am until morning that I have in and got amytriptiline. A low dose does keep me asleep all night. It's particularly good for leg pain.

Speaking of which...well had a good weekend and out both Friday and Saturday evenings. I had a nice time but Jeez I am so sick of sit, stand, wriggle stretch, sit, stand all bloody night. I would give a million pounds to be able to sit. Had to get up eRly this morning and wS in the pool doing my hydro by 9am. Anyway, after doing just too much all weekend am in grim pain. It's the kind I can't relieve. Had cocodamol and tramadol this afternoon and did sleep a bit but the pains even worse now.

I'm going into London for a lidocaine infusion tomorrow at the pain clinic. I'm a bit nervous, I haven't managed to actually speak to anyone else who has had this done. You have to be closely monitored I believe as it can affect your heart. So early start and yet another day out of the office for DH.

pavlov, thanks so much for the pm. You've really given me something to think about. Think i'llgo for it.

Hope you've all had a good weekend and not overdoing it at this very tricky time of year.x

matilda, reviving so so agree that amytriptiline is great for leg pain. It pretty much stopped my leg pain, it was the best pain reliever for nerve pain ever. unfortunately for me I was particularly sensitive to the side effects and after 5 weeks off work and still not functioning in this world I had to come off it! (and don't do that quickly either, a steep learning curve there). I couldn't speak properly, I slurred my words, I sounded drunk, I simply could NOT get up in the morning, even though I took it at 6pm (which pretty much meant I was in bed by 7:30-8pm as it knocked me out). I put milk in the cupboard and sugar in the fridge, I developed a huge blind spot and lost my peripheral (sp) vision. It was when my GP told me that a) I had to stop driving for two weeks following my periferal vision going and b) I needed to call my insurance company/DVLA and tell them I was advised to stop driving for two weeks and what I was taking for when I started again that I decided to stop it. My eyesight was actually fine, there was just a blank space when I looked over my left shoulder, or for keys, or glasses, or phone. It also messed up my appetite and I stopped eating. I forgot to eat as my hunger pangs never kicked in, I never felt hungry even when I was reminded to eat and I lost 2 stone in 5 weeks!!! So, i guess if you want to lose weight it's great

Intrigued about the lidocaine injection. I have heard of them but don't know anyone who has had one so be interesting to see how you get on. Sorry that means you are our thread's guinea pig though I hope it goes ok, and provides some relief.

Now, a financial support tip. I had a conversation with my water company about bills etc as my water bill always seems excessive. Anyway, that's a different story. one of the things I mentioned was that I use the gym a lot for showers as they are hot and fast (and this was partly why I was annoyed my bill was so high) and I talked about how showers are fab for my disability and it was a shame it cost so much for a shower at home! She said to me this: if I need to use, or it is recommended that I use a shower for medical purposes, ie as therapy, to relieve pain - if a shower or bath is a good way to relieve pain - then if my GP would be prepared to write a letter to support that, I could get my water meter payments capped at a set amount, so once the meter reached that amount I would not be charged any more per month for the water used. She has sent me a form to fill in and send back with Gp letter (or section signed). So, if you are using more water, or could do with bathing/showering more to help with pain then speak to your water company.

Lordy me! Amytriptiline did and does make me a bit dopey first thing but nothing a cup of tea can't sort out. Thinks Xmas' reaction was pretty drastic. Def worth trying. Sleep is so important and lying awake in pain is the loneliest feeling.

sorry that last post from Xmas was me I didn't namechange back from thank you thread.

You are right, absolutely you have to try things, as I said, it was the best painkiller for leg pain that I have tried. I am just quite sensitive to the side effects and GP had to start me on really low dose for pregabalin due to my low tolerance for those meds. I never got above 75mg for that and usual dose for sciatic pain is around 200+mg! Funny how I don't have such low tolerance for tramadol or codeine but I do for diazepam, 4mg sends me into a goofball.

So, yes, try it and normally the side effects wear off after around 2-4weeks, or at least become manageable.

Didn't mean to poopoo it! It also has the added bonus of increasing seretonin which makes things easier to manage mentally too.

I am learning to knit. It's not easy is it? I never knew you could get cramp in your wrists from it

I was put on a very low dose of Amitriptyline for leg pain (thought to be due to ME- now I am wondering if it was my dodgy back all along) and was advised to start on a tiny dose (half a 10mg tablet). Now I tolerate 10mg fine, although I am extremely slow in the mornings ( a part of my ME+ POTs anyway). It did not help with getting painfree enough to sleep to start with but did after a couple of weeks. I have put on weight since being on it (but have also had quite a lot of steroids for asthma which make me ravenous).
Pavlov I am over sensitive to lots of things too! I wonder if there is a connection?
Good luck tomorrow Matilda. Lidocaine is used as a local anaesthetic I think.
My legs get weak when I stand for a short while - not so bad if moving. Then I look drunk when I start to move again. Again I don't know which of my infirmities is responsible!

Thanks all. Yes lidocaine is a local anaesthetic. But it's being given intravenously in a bag over an hour or two I think which feels weird to me. Still, willing to be your guinea pig...

Amytriptiline is a bit of a head fuck, it works but does make you feel stupid. I can tolerate 20mgs but do have to drag myself awake. When used for depression, which was its original use, the dose is 150mgs. It's no wonder psychiatric patients used to look like zombies. Thank god better treatments are available now.

Early start tomorrow. Wish me luck. Annoyingly the journey is a bit of a killer, sitting in the car through the London rush hour so likely to be in bad pain regardless of any infusions. Hope they do good tea and biscuits.

Thanks again for you advise I will talk to dr tomorrow, I actually had really bad leg pain earlier after sitting on the sofa. But side effects sound bit scary.
matilda good luck with your injection tomorrow. I hope it really helps x

Funny thing is though reviving I could take tramadol with no side effects really, not huge ones. Where, others can't take it at all as it's too strong. I got used to that very quickly indeed and on occasions took 400mg of it and could still function fine. I expect I did a lot of smiling, and I know I did much more talking, but I could work on low levels of tramadol day in day out where I could not with the nerve pain blockers. One of my colleagues who has spinal stenosis is fine on gabapentin and can work no problem, but can't take codeine, so it's all so different for each of us, you have to try different things. Leg pain/sciatica is so hard to manage, as normal pain relief doesn't really touch it so be prepared.

matilda good luck tomorrow. magso it must be so hard to not know where one condition stops and another starts, especially as chronic pain such as back pain screws up energy levels, and ME causes chronic pain of it's own, it all crosses over for you

I really need to go to bed but need to post here so I find it again. I've been successfully ignoring worsening SI joint pain for about 6 years but this thread has scared me into going to the GP. I know I need to, I just don't want to!

hairy waves. Sorry you are suffering, but you are very welcome here.

I have had an almost pain free day wtf?! I mean not complaining, but really, really impressed and surprised. And, bloody hell did I notice the difference in my mood! Wow! I actually felt quite happy! Sort of bouncing, singing in the car, smiling, laughing at work! Remained ultra cautious and have been expecting it to return all day. It has a little bit this evening, but nothing on the scale it has been. I sighed earlier and DH said 'back hurting?' And I said 'not really! Just tired!' (And I am really exhausted).

I have done the following for a few days, since Wednesday.

1. You will tell me off for this. I have doubled my anti inflammatories. I have also doubled my omeprazole ! I am going to speak to GP and see if I can textually go higher on them. He had told me to double my night time dose, but to miss one out in the day instead suggesting he won't like it....

1. I have used heat, almost constantly, including listening to your wisdoms ladies and been using those heat patches! But, at home using hot water bottle almost constantly, and staying in the shower too long, hot baths. It has caved me wonder, along with other people suggesting it, whether my increase in pain has coincided with weather changing and it's the cold making me hurt more? Does the weather affect anyone else's pain levels?

1. On several occasions I have been wide awake and up at 4am due to back pain, a cough and a pain in the bottom 4yr old coming into our bed. So, I have taken my double dose of anti inflammatories, and some Codiene then and gone back to bed. I have been bad and not eaten with them ate that time, so that's not a good solution long term, but it has been easier to get up in the morning, to get moving doing my exercises, and I think mentally I have been in a better space when I get up as I am not in as much pain. 4am is around when I wake up 4yr old or not, I just try harder to get back to sleep, but it's around then my pain becomes a little too hard to ignore, I wonder if my ds never woke up then if I would sleep through it, but now my internal alarm always wakes around that time.

It all seems a bit too much to manage every single day, so will see how long I can go with the effects of the above (not sure which helped most, or a combination of all) without doing it for a few days. Toward the end of the week I will do it all again and see if I can keep things at bay.

But, woohoo!!!

matilda how did it go?

Everyone else? Are you all ok? Any news on MRIs, appts?

Lidocaine infusion was fine. They attached me to a heart and blood pressure monitor then put in a cannula and pumped the lidocaine in over an hour. I felt normal. Was ok when I got home but then fell fast asleep so I know why driving was forbidden! They said it could take days to kick in if at all...all a bit woolly. I'm not holding my breath. Anyway had a nice lie down.

Pavlov, how fantastic. It sounds like the combination of pain management has helped. I hope you can sustain it for a while. I get the odd inexplicably good day (hope yours is not one day!) can you take your 4am pills with a half cup of milk? I keep milk in our room overnight and it's fine. Also are your anti inflammatories enteric coated? Heat does indeed rock.

Hairy, nice to meet. Hope your GP is helpful.

Hope everyone else is quiet because they're busy having fun.

Nighty night.

I am stuck on mumsnet! Had a bad night but took painkillers managed to sleep a bit. Then slept all morning. Came down stairs and have managed to find fairly comfortable position, which is great progress! but now can't get up! Dh has gone for a rest he is on late shift so I am just stuck here! But not in pain unless I try to get up.
The funny thing is I still keep wondering if I am imagining this is worse than it really is, and i could do more if I wanted.

Phew managed to get up by using extra cushion. Now drinking prune juice. I am not keen on it!
I must keep getting up more often so I don't stiffen up.

Hi, I'm hugely late to finding you ladies, but thought I would say "hello" anyway.
I'm a 32 year old mum of 3, (6, 8 and 10 years old). I had SPD with my last baby and ended up on crutches from 18 weeks. The pain since then has changed from my front/pelvis to my back and shoulders, so I'm not sure if it's even related, but I've pretty much been in pain since then. I've paid for private MRI's after being dismissed as "just being in pain from pregnancy" and an old break was found at the base of my spine, this had mended but made too much bone which has joined a couple of facet joints and done some nerve damage. After a short NHS wait (19 months) I had steroid injections, but these did nothing. The pain worsened and went further up my back so I had a full spine CT and MRI. This showed a disc gone in my neck, one in the break, and another 2 spaces above that. Another 2 are bulging in my shoulder blade area. The ortho consultant looked at the scan, declared there was nothing surgically he could do and sent me on to pain management. TBH I had high hopes about this, but was bitterly disappointed. His verdict was although I'm in a lot of pain and it will only get worse I manage ok from day to day and there's bugger all they can do apart from meds. He doubled a dose for one and said come back if the pain changes drastically but not too bother if it was "just" getting worse. Then he discharged me.
That was 2 years ago and, shock horror, it has got worse and I now take 4 different meds a day which total 26 pills. God help my guts, I think they must be made of steel! The only problem is even though I rattle, like many of you I'm still in a lot of pain which affects everything I do.
I would love a name or cause for my pain, but I'm not sure that's ever going to happen and I'd still be in pain.
Hey ho, whinge over!

cowmop' hi! what a horrible situation. Sounds very painful for you. I know how you feel about the meds, there's no alternative though, is there?

Your surgeon actually sounds quite sensible in not offering surgery.where would he begin? Do take some hope, though, that discs can and do improve eventually. In what way were you disappointed with the pain course? I found mine good although I'd reached the point of truly knowing that conventional medicine wasn't going to cure me. It must be very hard with such young children, even with an enormous amount of support being a mum is very physical. I hope you do have a lot of help.

Do come back and chat to us. Pavlov has young children and will be able to commiserate with your difficulties.

reviving glad you're a little better. Try to keep moving, potter gently, rest, potter. It does help, promise!

Off to afternoon tea with my inlaws plus two other equally ancient aunt inlaws. Who said not working was easy?!

Has anyone tried hypnosis? I have had a download for something else before from these people uncommon knowledge and found it fairly helpful and very relaxing, they have a hypnosis for anything you can think of lol. It might be helpful just from the relaxing quality so I may try one. If I do will let you know.

cowmop I am surprised you can move at all. You will get helpful advice on here and can have a moan.

matilda are you noticing any benefit from the lidocaine yet?