what to do?

My back and nerve pain is at it's worst since I had surgery last year, I have nerve pain going through my hips and both my legs and it is constant, I have been told that I require further surgery but that will not happen until I deteriorate completely and I have no other options. I went through this last year and had emergency surgery after I was unable to walk or to dress my lower half. Following that I was able to walk but the pain quickly came back and has increased ever since. It's really getting to me knowing what is probably going to happen and I can't get into pain management as the hospitals new procedure is to go through psychology first. I got told 6 weeks for an appointment 4 months ago and despite contacting them I'm still none the wiser.

I am currently on alot of meds and when I have been higher in the past I have been unable to function. So I'm torn between being high but in less pain or being in pain but functional.

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19 Replies

  • Hi Paul,

    As you're prob aware I'm currently in a position post surgery where I feel that things haven't got much better for me.

    Im trying to give it time, but it's tough sometimes to move and not be down about it.

    I don't know if you can look at private physio at all (I didn't find the nhs one any good) but I'm currently being treated by someone who is using the Sarah Keys approach. Www.simplebackpain.com

    Worth googling, but essentially it uses a back block to help with the pain in my lower back. Coupled with leg rocking excercise and some spine manipulation from the physio. It may/may not be right for you / your back, but my issue is at L5/S1 and when the pain hits I use the block and it does relieve it for a while.

    I know how frustrating it is, im 36 but feel like I'm 70 - sitting is my only relief and actually is the main reason why I'm in this place, so very much stuck between a rock and a hard place. I try to not let it get to me, but it can be tough when it's so debilitating. I'm not using any meds, they bring me down too much and I don't need any help with that!!

  • I am aware your going through similar situation and i feel for you, I really do; It's horrible debilitating pain and I wouldn't wish it on anyone.

    I have a NHS physio, but she is a spinal specialist and is fantastic, I could barely move when I first saw her. I will query a back block, she does acupuncture for me occasionally too.

    I don't have it in me to go med free as I wouldn't be moving, You are alot stronger than me!!! Although I have dropped my meds down so I can function and not be spaced out.

    My problem is the opposite, I can't sit down for long without it my pain heightening.

  • I'm delighted to learn that your physio has helped you enough so that you can drop your meds down. Keep up the good work. I start my own NHS physio in a few weeks. (waited almost half a year)

  • 6 months for physio where do you live ? That's long time to wait

  • I live in North London. They made me wait 4 months for the first place then sent me a letter saying they had only just got my referral. I then asked why and they said we could move you forward but at another place. So I waited on another list, I did see a doctor but had to wait to be booked in for Physio. All this time the condition has become worse as I'm not sure what I should and should not be doing. I have 16 days to wait to get started.

  • Hi,can you buy bed blocks in uk? If you don't want to take medications would it not be worth trying a rub,I've tried 2 and they've gave me good temp relief x

  • I got my back block from the physio for £15 it's a wooden one, I think you can buy them from yogistar.com

  • Hi, hope I don't sound stupid. I had surgery on my back, L5/4/S1, 1 is fused, the other the doc said they had to chip away some bone. I've never been right, I now have ostophosis, Lumber facet joint disease, APS, and many more. The doctors have told me I will never be pain free, but my pain is so bad that I canno longer lay down because of my hips, I used to have a very understanding GP, but because I'm very complexed, her words, she told me to get to bed.

    I found sleeping upright on a special cushion, I place it in the middle of my chair so the base of my spine is not touching nothing. Now I have this thing called the block? My doctor don't know what it is, can u explain what it is and its purpose.

    Good luck


  • It's worth reading the simplebackpain.com website for the exercises as well to go with the back block - I wouldn't want it to end up worse! :)

  • I use rubs on my back. No idea about bed blocks.

  • You sound like you have the same pain as me. Nerve pain through lower back and hips, and lately its also started to creep further up my back. I have been advised against surgery for the very reasons you are now going through. I was told it may make it better, but it may also make it worse - the choice was mine, with only 50/50 odds which way it would go. So I havent had it. What meds and what dosages are you on at the moment?

  • I was told it was a 50/50 op too but at the time I couldn't walk so had to take the gamble. My med are Transtec patch 35mg, pregablin 2x 300mg, naproxen 2x500mg, codeine 2x50mg, Amitriptyline 50mg pd, fluoxetine 40mg pd and paracetemol just for fun... oh oramorph and lidocaine patches too

  • I have read about surgery when it can make it worse. Can you imagine. You have bad days now but....you have no idea what they could be like!

  • Hold on..... ''knowing what is probably going to happen'' You can't know

    what will happen in the future. Try and keep things in the here and now.

    I understand the pain and frustration you are having to deal with!

    But...you must try as hard as you can to focus only on now and what you

    can do today to feel better. No past, no future. Look after yourself now.

    It sounds like you have lots to deal with. I would think carefully about more surgery.

    Do lots of research. I have read that some people get worse after surgery and some get better. It is a risk. See what you are willing to live with. I wish you a great day. Make sure you take time out to be kind to yourself.

  • I felt like surgery was a bad choice but I had no choice both times. It took me years to get mobile and pain manageable, and I mean years. Like 4 years.

    I'm in a deteriorated state still now by getting by. I have lost tone in saddle and decreased feeling. I have a neurogenic bladder and am I continent at times to both bladder and bowel. BUT that is preferable to losing ability to feel anything below injury level and being in a wheel chair from early 20's.

    Yes it's a difficult descision with no garantees, but I felt that I had to try something. Twenty some years later I'm glad I did. I'm on meds everyday, I do mobilise every morning or I can't move all day. I take minimum I need to get by, not to try and remove pain as it is still an indicator to overdoing things.

    Chronic pain sucks, but you have a choice to meet it and take it with you everyday or let it take over you and go nowhere and do nothing.

  • Hi Paul,

    Sorry to hear that you are in constant pain. I also have chronic back pain (nerve damage + spinal stenosis + disc degeneration + structure of lower back now deteriorating) originating in L2-L5. Your description of back/hips/legs in pain is just the same areas as myself with my current pain being due mainly to nerve damage (hips can be a nightmare!). I also had an increase in pain following an emergency disc decompression in 2010 following walking/moving/body function issues and am now on crutches and have a wheelchair for longer distances if needed.

    I also went through strong opiods/physios/OT help/hydrotherapy/facet joint injections/surgery/psychologist/pain management/chiropractor/excercises and have recently been told I am not 'currently' a viable candidate for a Spinal Cord Stimulator due to weight and other back related issues, which is basically the end of my NHS options (I turned down spinal fusion and am still on meds). I have, however, been told by the orthapaedic surgeon and anaesthetist that I can have my case reviewed every 2 years in case of advances in medical possibilities and/or changes in my personal circumstances (i.e. losing weight or changes in my other medical issues) which may make me eligable for the stimulator, so I remain hopeful.

    I know it is hard, frustrating, all-consuming and devastating at times; I have had to change from being a very sporty, working, active dad of three to being a watcher on the side lines, which is very difficult, but I try to keep focused on 'NOW' rather than the future, or 'what if's' or 'why me' ect..... It is very, very hard at times, but although the meds affect me I managed to find a different role in my day to day life; giving encouragement & advice instead of being as active with the kids for example, I took up a new hobby (art), and joined a local charity group where I can do some volunteer computer work from home, and at my own pace (cannot sit still for too long). It took me 5 years of severe pain, depression, knocbacks, anger, unemployment, psychology and physical therapies to get into this mindset, but it IS possible (I still have periods of severe pain where I cannot move for days, fits of screaming in anger, punching walls & depression to name a few, but I try not to let it stop me smiling for long and live as much as I can at the moment.... I am now in a place where I can enjoy most days eventhough in pain - I know it's hard but don't let the pain defeat you!

    Regarding the psychologist/pain management, my psychologist referred me to the local Pain Management course whilst I was still seeing him once a fortnight, so maybe yours could do the same! Along the road I was able to pick up at least one or two great tips/excercises/lifestyle advice from each of the therapies that has helped with day to day activities, which are very limited. I really hope the pain management course/team can help you; it will give you the chance to ask anything you want whilst having access to people in several different pain management disciplines (physios, anaesthetists, psychologists, orthopaedic surgeons). I also met other people on the courses with similar issues and found that MANY of them had found a treatment or therapy that REALLY helped them, so I hope this is the case for you too.

    I'll say a prayer for you Paul, and hope your next appointment comes soon and is more productive for you. I agree with others here that you need to research ALL available surgeries, relevant pain management techniques/procedures and available therapies so that when you DO have a next meeting, you can go armed with LOADS of questions.... don't be afraid to ask doctors for refferals to other departments or to get second opinions... they cannot refuse your request and you ARE entitled to it; although they may advise against certain treatments of course.

    I really hope that you find a solution to your chronic pain, but failing that I hope you find a balance of meds and therapies that help you to move forwards, day by day. One of the best bits of information I got from doctors was that, although I may deteriorate over a long time, I would NOT make my back any worse by moving/pushing through the chronic pain to do my limited day to day activities - this gave me confidence that the pain did not mean I was getting worse or damaging anything further when I moved, just that my body had healed as much as it possibly could and that I unfortunately still experience severe pain. It made me think, screw the pain, as long as I know I'm not getting worse by moving about I'm going to do things rather than let the pain keep me still/inactive.

    Take care Paul, I hope you get sorted out with a solution, and please message me if you want to chat to someone in a similar position.

  • I hear this so much. After back surgery people feel worse. It really upsets me.

    YOU CAN get into pain mgt when you write to your MP! Please do this.

    Do not suffer. I have been FIGHTING for 6 months and I'm getting things

    that I need. I have been messed around, given wrong drugs and even met

    people that have hurt my back (but I stopped it there!) and asked for another

    referral. I keep fighting. Why? I can't stand being in agony!! I have been in

    agony 4 times and I will not let it happen again because I care about myself.

    Look after yourself. Get the help you really need. Write to your MP if you have to.

    Call the media, call the papers! Anything. Do not suffer.

  • All I can say is wow. After a week of debilitating pain, stress and tears trying to battle on; I log onto here to find so many messages offering advice and support and I must say I am feel quite overwhelmed. It distresses me to know there are so many people in a similar situation to myself, though I definitely find your words encouraging and drive me to battle on. Today I enrolled onto a Access course at college with the view to attending University next year. I am determined to not let my situation define me but steer me down a new path. I know this is going to be a mammoth challenge; one that beat me already, I enrolled and withdrew from the same course this year. I am wiser though and more determined to battle through than ever. At times in lectures I was in tears due to the pain and I was ashamed by it and I suffered mostly in silence. I learnt from here that I should not be ashamed of my pain and to scream out if I need to. I Thank you for your continued support and hope my determination to battle on in a small way helps others.

  • Hey all, I started an 8 week pain management program this week on the psychological effects of pain and how it impacts on you. It is designed to help you cope better with the pain(not reduce it though); which is where I am now after being told again short of surgery this is the way it's going to be now. Has anyone done anything similar? I am confident it will help me manage better and not define everything I do any longer. What are your thoughts? I have done some mindfulness but this is a lot more in depth.

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