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)

scone I love that they expect us to do nothing! Hope you don't have to wait too long for consultant appt. What anti-inflammatories are you taking? what level? I know for certain I have inflammation, but my dose eases but does not cut it properly, I wonder if I can go higher. GP said no, but info on t'internet suggests I might be able to, but probably have to push it.

Jumping children? oh yes I have two. DD now 7 has learnt over the last two years that she simply cannot do it. So she charges at daddy instead. DS, now 4 (yesterday!), still hasn't really got it. Well he has, he is better than he used to be but he forgets and jumps. But, he used to jump off the sofa onto my back and I was in soooo much pain I would scream at him. Poor kid. It took a very long time (he was a bub at only two when this first became a problem) for him to understand that I could not have him jumping or hanging.

louey firstly. If you pain is 8/9 out of 10 you need to consider going to A&E if your pain releif at home is not working. But. You need to take your strong painkillers and see how they help. Not half a tramadol, you need to take the full dose and accept you are going to be a bit screwed brain wise. Are you taking paracetamol? For an over the counter medicine, it's actually fab. If you take it with napraxen and tramadol it works wonders. If you don't get on with tramadol you can ask for codiene. You can ask for sulpadol, which is 30/500 (co-codemol) and take two if you are at 9/10. that is 60mg of codiene so don't advise if you have not taken it before but if you have and are ok with it, it will turn you into a goofball but will work . Also, if you think there is some inflammation of the muscles/spasming (may well be) you need to ask your GP for some diazepam, if you can take it. It will stop the spasms and let the blood flow better.

Also, use heat. Heat is great for pain, don't underestimate it!

Secondly. If your pain is going into your buttocks and into your legs, it is nerve pain. If the pain is severe enough to stop you walking, if you have numbness in your whole leg, if you have 'saddle numbness' (genitals, back passage) can't go to the loo (not due to meds but no sensation or altered sensation) then get to A&E so that cauda equina can be ruled out. I was stubborn this time last year, I was in SOOO much pain, and my leg was very numb but I felt fraudulent as I knew what was causing it and was 'in the system' so felt I shouldn't go to hospital, but I couldn't manage it at home and should have gone in.

oh, and also, meant to say, if your nerve is trapped, or pressing into the spinal canal, this is neurological. He should be sending you to neurosurgeon for injections or anything that is linked with discs, not to orthopedic surgeon. Check that out with him so that you are not sent around the houses.

Hi I have posted a few things elsewhere on mn about my back suddenly going, but hope you all can give me some more advice. My full story is I have had a weak back for years and once before hurt it extremely badly which I could just move but was in agony and took a few months to go completely. Then over the last few months have often had problems and aches, last couple of weeks getting worse each day but could still do most things, then Thursday could not get up with out the most hideous pain I did manage to walk into the other room but just stayed there all day. It slowly worsened until in the end I called out the emergency dr who gave me an injection (not sure what) and some diazapam also I have ibuprofen and paracetamol and codiene. I am still in bed I have got up a few times but still can't sit on toilet which I really want to. I did manage to sit on it but was in such agony i couldn't go. I have been able to go in a bucket. I never realised the toilet would be such a big deal. its awful.
Pain is in my left lower back and going down my leg. Sometimes my leg hurts really bad.
I keep reading things about trying to walk despite the pain. Is this a good idea, how much should I walk.
Dh insists on calling dr back out Monday but even though they did come out in the night before is it a good idea to call again. I talked to my own dr on Thursday when I was stuck in bed but not in as much pain and he was a bit dismissive and just prescribed some codiene for dh to collect.
Also I am a bit concerned about taking all these pills. I don't think I can manage without then tho. Is there a real danger someone recommends I took paracetamol first, then 2 hrs later codiene then 2 hrs later again ibuprofen, I have got the gel now which I think is better for my stomach but still have pills left too. The reason was to space them out so I am never having to wait in pain for the next dose. Is this ok do you think.
Sorry for all the questions I have never had this problem before.

A tip for sneezing from my osteopath - wrap your arms around yourself and give yourself a tight hug (so, arms crossed over the front, hands under your armpits and squeeeeeze!).

Now, you have to sneeze down into your chest as you obviously have no hands free to catch the sneeze but it does actually stop my legs collapsing and the pain. I've even managed to sneeze sitting down virtually pain free.

Absolutely no use for whilst driving mind you!

pavlov, feel free to pm! not sure if I could help but happy to try! So sorry you are suffering so much again (and all others both new and old on here). I totally get your crazy range of emotions re the seemingly endless nature of all this. It's a total head fuck. I have, amazingly found some of the mindfulness stuff helpful. Just bought an app by Jon Kabat-Zinn on mindfulness and pain which is quite good. There has to be a way of learning to live with it.

reviving, sorry for your situation. Sounds like a very bad case of sciatica and spasm. This really is a call out the dr moment if you need additional drugs. Unfortunately gps don't have that much to offer other than drugs and referrals. My experience has been that it's often best to know who you want to see. I know of a rapid access sciatica service if you are in London, though not sure just how rapid. It is NHS! Please read all of pavlov's excellent advice a couple of posts up thread. I can't emphasise just how much comfort I have had from my hottie. If it persists at this level your GP will have to get you seen by neuro team in a&e. The stuff about not weeing and saddle numbness is massively important. Please go to a&e if you have the slightest doubt. Cauda equina as it is called can result in permanent bladder damage. Don't ignore or assume your GP knows best.

Also, sadly, long term drug use is something we may have to get used to. I am on a huge cocktail of meds. There is no alternative. Hopefully you will recover. If you're on long term anti inflammatories you need a stomach protector like Omeprazole. The thing is to understand how different drugs work and how to combine them. A group of drugs that are often good for nerve pain( your leg) are things like Gabapentin and amytriptiline .

Sorry, getting epic again. Love and warm hugs to all. (Tramadol talking!)

Thanks for your reply Matilda I am sure about the toilet problem only being due to not being able to use the toilet I am able to go in the horrible bucket. Although it is still painful I am feeling a bit better in myself.
I will definately call dr monday esp if i am still having problems walking. What is the best way to approach them do you think should I ask for a visit, if I still can't walk easily. I have managed to walk into the next room with dh help but it was agony and if it is still the same not sure I could make it to the surgery.

reviving go to hospital. Seriously. If you are in so much pain you don't think you can get to go surgery, then you need stronger painkillers, now. In my own experience of gps they won't come out for back pain. But I have had telephone discussions and been prescribed over the phone, both ooh and my own GP. In fact, I rarely go to see the GP now as he knows my condition, I just call up I remember feeling where you are now. Thinking hospital was not the right place, and looking back simply cannot beleive I didn't go! Peeing in a bucket due to pain and not getting to loo is not good. It sounds v much to me like you need more intense pain relief and maybe they will decide to do MRI if they think your nerve is trapped.

The absolute bed bit of advice I was given when I was where you are was to go and read the spinal pathway info for your pct. there is a route the GP should take depending on pain and treatment responses, either primary care route (osteo, locally managed back pain clinics) or neuro/hospital route (physio, spinal assessment team, hospital pain clinics) and you will also see the usual route the go should follow for pain relief. I found this so helpful as a it meant I knew what to expect from my GP, and when he didn't change tack when the primary care route didn't work, I knew what to ask for next. I didn't realise for example before reading my own pct pathway information that I could ask to see a neurosurgeon. When I knew, I asked. Physio was also good as they were able to spot read flags and speed my spinal assessment appt.

Wow long. Not even taken tramadol

soup I'm going to do that for sneezing! I have been managing by holding onto things and crouching. Not a good look at work or in supermarket

I went out last night. Mistake. Didn't drink much, home by 12:30am, but ds woke me at 3am, maybe earlier. No sleep from then on as in pain so couldn't sleep.

I have pulled a muscle in my neck. Is it related to my back, how I am standing, walking etc? I am trying to keep posture sorted but it's hard. I have pain in my spine at the top, worried it's not just muscular, as pain reminds me of lower pain but in neck. It is radiating down my arm into fingers, arm feels heavy. I have had neck crunching for a while, but not painful. Just put it down to bad posture, spinoff if not having good spine for a while. So, of course, rather than thinking its nothing major I am panicking that I am actually falling apart. It's not likely to be a disc or something in meat cervical spine now is it? Either way, lower spin spin and upper back pain is really really shit.

reviving meant to say also. We are rattling medicine cabinets here you have to take them! No need to suffer. Although I am a really bad medicine taker. I refuse, then get fed up, then take them, then stop, then start. You need to be regularly taking them, especially the anti inflammatories,as they build up in your system and work better.

Reviving, I agree with pavlov. Go to a&e. You can't walk across the room and have to pee in a bucket? How much worse does it get? You say you feel slightly better, I wonder if the spasm is easing a bit. It does after a few days. Basically the spasm is the muscles trying to protect an injury. The injury is still there. I'm not a doctor but this does sound like a disc prolapse. It can only be diagnosed completely with an MRI.

I would go, tell them about your toilet troubles and weep loudly. I'm pretty sure they'll scan you. I found having a diagnosis very relieving somehow. It will get you better drugs, too. Please go. If you have private health now would also be a good time to use it.

Pavlov, I never knew that about the pct pathway. How interesting. Where did you find it? I honestly found my way through quite random referrals, some good some not. btw if your neck is now agony, too do try the Alexander Technique constructive rest, it's meant to be really good for necks. Tingling in arms sounds a bit ominous..

Went to the Tate yesterday and am paying for it now. Drugs haven't helped so off to try my new app.

Thanks guys im not totally against going to a and e but I am still worried about getting there I just can't face a drive plus long wait in uncomfortable chair. Also of course worried it is just normal back pain they will think not worth being in hospital for but can be treated at home. Do you think they will give me anything stronger at home I am coping ok on the pills I mentioned when lying down but nothing is helping me with the pain when I move wrong, stand up for too long or sit down where I can't take all weight off my back by leaning. If I could get something maybe I could go to hospital or other place.

I have had a few tramadol i had left over from a previous injury when it first went also, that eased pain when still in flat position but again not enough to help me move. So even that is not enough to get me moving far.

Wish I could have gas and air like when I had dd lol.

Pavlov Hope it helps with the sneezing - it was a revelation to me. No more having to hold onto something and bend my knees

revivingshower - you must go to hospital as soon as you experience any of those:
www.patient.co.uk/doctor/cauda-equina-syndrome

this was advice from my sis-in-law who is a GP and herself experienced it, what followed was an emergency back op for her

what those symptoms mean that your nerve is damaged and in worst case scenarios you can end up on a wheelchair if damage has happened

she described her symptoms as loss of feeling in one of her toes and constant tingling of the inner thigh

I was rescued from massive pain and inability to walk by a very experienced osteopath who massaged my muscles and they relaxed so that I was able to stand up and walked to the toilet by myself for the first time in 3 days

I have succumbed to diazepam. Back pain eased, neck/shoulder/arm pain less so. only 2mg, second dose just taken so that'll be me in bed in a mo , i am hoping it will sort out the neck/shoulder/arm issue as 1) i have to drive to a meeting tomorrow and 2) I have to do a lot of typing tomorrow. Diazepam on a school night is not hugely great as I feel groggy and tearful the next day. not good at work.

matilda you know your scarring from surgery - what kind of pain does it produce? I wonder because the stinging I have, the sciatica is in both legs quite uniformly and I guess I am wondering/worrying if it's scar tissue causing the pain. Is it too soon following surgery for scarring to cause pain?

Know how you feel Pav. Have resorted to tramadol tonight - normally can cope ok with the diazepam but it has been ramping up for a day or two and as I was making the dc's dinner so hunched over they were calling me Quasimodo, it had to be done.

The Nephew returns to from where he appeared tomorrow which is a relief. He may be 20 but it has been like having a particularly needy child (though one that smokes and drinks) in my house. And no - he hasn't helped with anything. I am determined to be fit enough to drive him back to the airport tomorrow. I feel so utterly horrid, but it has been such hard hard work having him here.

Reviving, I really think a chat with yr gp (at the very least) would be a good idea. Have you seen anyone at all about your back?

20 year olds are so selfish!But, actually not all. I would never have stayed at a relative's house at 20 yrs old and not helped. Especially if they were poorly, but even without. I would insist on helping. Bet you are glad that's over!

I don't know whether to take the day off work tomorrow. Even if I feel marginally better than I do now, I am going to have a 'painkiller hangover' which is not helpful when working/driving etc and I won't be able to continue the meds at this level.

working is so hard right now

20year olds? Lovely fun if you're on form, bit like toddlers with regard to helping out. Think we've raised a generation of useless but entertaining dependants, too much extra French, not enough helping with chores. My two need to be told everything.

I have the dr coming for a visit today. I am going to tell them how I am doing of course, anything I should ask? Am going to ask about physio and I think they may recommend it anyway. I have managed to walk slightly more but its still very hard and leaves me exhausted. Going to keep doing little walking every hour or so throughout the day though.

soupdragon, that sneezing hug is helpful. Thanks!
Reviving hope the dr was/is helpful. I don't think our GP will do home visits.
I am a bit better than last week. Its gets worse through the day so presume it is simple compression causing trouble. Cannot sit for very long, especially in the car. I have a long car journey the weekend before Christmas which is a worry. I managed work just about (work very PT) with a giraffe pose rather than sitting or standing with a stoop ( I am too short to sit for most work related jobs anyway- I usually perch on the highest stool available) for as much as possible. Has anyone found a seat wedge helpful for sitting? I already use a lumber cushion in the car, without which I would really struggle. I have a mini wedge ( from Aldi or Lidle some years back) but it is really too thin and soft to help. I often get numbness in my saddle area (even when not in lots of pain) with sitting but it resolves when I stand, although I look drunk for a while, until my balance and legs are fully back on line.

Pavlov hope you are feeling better today.

My pleasure. :) I have been sweeping dusty corners so have been hugging myself a lot today!

My dr do not like to do home visits but only if you just can't get in they make an exception. Dr examined me said thinks it will slowly heal take double dose codiene now 60mg at a time plus ibuprofen and paracetamol and diazapam, not all at once! Hopefully this will allow me to move about a bit more.

revivingshower - cou,d you look for an osteopath for home visit?