My First Post!

Good Morning,

This is my first post, so please be gentle with me!

I suffered with what I thought was sciatica for 7yrs, numerous visits to GP over the years, he just wanted to give me meds ( I have never taken meds for anything, my view they just mask the problem ) not once in the 7yrs did he examine me, however after 7yrs of on & off pain, the pain got excruciating.

I visited another GP who did examine me and was shocked to see the muscle loss in my bad leg, also no reflex in foot or leg, she referred me for XRay, however before XRay results came back I developed foot drop, so had to go private and was operated on within 2 weeks, Surgeon found L5 S1 disc prolapse, large sequestrated fragment compressing S1 L5 and performed L5 S1 discectomy.

Since my Op, the nerve damage has been horrendous, burning, tingling, stabbing and my whole leg & foot from waist down is completely numb!

I then started feeling a strange sensation from my waist up, when I touched something cold, it was burning me and when I touch something hot, it was freezing. Also three fingers on right hand numb.

More MRI's and tests confirmed C5/6 disc prolapse and further surgery, discectomy and cage fusion, again no relief after that Op!

The nerve damage is now permanent, pain management clinic wanted me on all these meds, pregabalin, amitriptyline, etc I have refused all of these meds as I don't want all the side affects that go with them, it's bad enough having to put up with all the nerve damage!

I'm struggling at the moment with the nerve damage and trying my best to accept that this pain, numbness etc is now with me for life, I'm 43yrs old!

Anyone else living with permanent nerve damage, any advice for relief, I am getting married this year and just want all this to STOP!

19 Replies

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  • Hi jenni57, my first post too. I have similar issues but they resulted from an accident. I had a fusion which did help from the first bout of pain but was left with nerve damage and chronic pain.

    I've stopped looking for a 'cure' and try to adjust as much as I can. I'm a similar age to you also and was medically retired. Since then I graduated and just completed my MA. I work in education mostly and have a full time job. It is too much and I will have to address the hours this summer.

    I have no specific advice for you right now as I think it is a personal journey, however, you are not alone in the World. Pain management relies more on lifestyle and coping strategies than medical intervention. On the whole they can be quite specific for the individual. I went to St Thomas' INPUT program which was excellent. On saying that I still have pain everyday, every now and then I have a flare up which can be bad.

    Good luck and I'll help if I can.

  • Many Thanks JonBoy, it's nice to know I'm not alone, just find it so hard to accept that I have to live my life with this chronic pain & nerve damage.....

    I struggle, it gets me down, it gets me angry! But I'm sure things could be a lot worse and I have to remember the Ops were never about being better, just about stopping more damage as I was threatened with life in a wheelchair paralysed from neck down....

    I admire you still working, I don't leave the house very often now, seem to have lost all my confidence and feel happier just shutting myself away, although my poor kids, feel so sorry for them, feel like I'm letting them down, but they're great, my partner works away 4 weeks at a time, so it is a struggle!

    But it's nice to share and realise you are not alone

    Many Thanks Again, hope you have a good day! Xx

  • What a terrible lot of things to happen. The only thing I would suggest is to try and push to get referred to spinal injury rehab - they have much more expert help available to deal with everything you are going through, as you really have ended up with what might be called an incomplete spinal cord injury. Make sure you are under a proper spinal injury consultant rather than just an orthopaedic doctor too. Also, to get support and an amazing lot of information, sign up to the apparalyzed.org forum. I have a similar kind of incomplete SCI to you, even though it was originally a rheumatology problem rather than an accident, but there are a lot of folk like us on the apparalyzed forum with non-traumatic (non-injury) damage and I've had so much excellent advice about managing things like pain and disability.

  • Many Thanks for your reply EarthWitch!

    My Surgeon has finished treating me as of Dec '15, as he can offer me no more help and after refusing to take meds from PMC, I have been left on my own, my Physio is not interested and my GP doesnt seem interested either, so I just feel I've been left on my own to come to terms & cope with all this pain & nerve damage...

    Thanks for your info re, incomplete spinal cord injury, I will look into this aswell as the apparalyzed.org.forum, just don't know where to turn.....

    Thank You, Jenni x

  • Have you tried tens oR accupuncture?

    I hated taking meds but had to just to regain some function and a semblance of normal life. Over the years I have tried many things like hydrotherapy which I loved and found helpful in keeping things moving.

    I tried reiki for relaxation, I had chiropractic treatment which was a mistake as it made things worse. I tried regular massage which helped sometimes but made things worse on other times.

    It's trial and error and learning to live with your limitations.

    When the nerves start to come back, if at all, it burns like hades. I had no feeling in my feet after foot drop in both. Years later I got an itch in my ankles that kept getting worse until my whole foot was itching and burning. It took some time to settle and now I get the same sort of pain from nerves that are once again injured somehow.

  • Hi Dan9878, Thanks for your reply, the pain is constant, the burning, stabbing, tingling, freezing and numbness is permanent!

    The surgery was never about being better, but preventing being paralysed from neck down, the spinal cord was so severely damaged, the damage is done....

    I have read about all the horrible side affects these meds have and feel I have enough to cope with, also getting married this year and don't want weight gain, I have tried these tablets before, they didn't help!

    I don't know what SCS is? I'm just trying to come to terms with this nerve damage and chronic pain and trying to learn to live with it.....Xx

  • Hi Jenni, welcome to this brilliant network of friends who live in pain. It's hard living with pain but knowing there is a group of people who are experts and friends is a life raft in sometimes stormy seas! I'm so sorry to hear about your spine problems and the surgery you've had to undergo. It must all seem very bewildering as well as dealing with normal life AND pain. I was with a pain consultant for a while who told me that gabapentin and pregabalin usually work for a third of patients and when they do work they work well. They didn't for me but I didn't spend too long on them after I realised they weren't doing anything so it might be worth considering some meds as pain brings down mood and it can crash badly sometimes. I understand you're getting married :) but depending on the date you might get yourself to a pain management clinic and try some meds? Personally, I found Duloxetine useful for helping my depression due to pain. The sites in the brain for depression and pain are linked. It's important to try to remain hopeful as pain and depression are the worst combo! Best wishes

  • Morning Boozybird,

    Thanks for your post, yes I would say the depression is kicking in with the pain and the feeling of not know where to turn for help & advice!

    I'm so glad I found this site, I feel overwhelmed some days, but I've found everyones advice so very helpful...

    I have tried these meds before, sadly they did nothing for me, but may consider them again after the wedding.

    Thank You Xx

  • Hi Danslatete,

    Thanks for your reply, I haven't tried Tens or acupuncture, can barley bare to touch my side because of the nerve damage, even clothes brushing against me causes pain.

    I'm just trying to come to terms with it all and like everyone else trying my best to live with this....Xx

  • Morning Earthwitch,

    Many Many Thanks for letting me know about apparalyzed.org.forum, I am NO expert in what is wrong with me, but after reading some info on this site, I am slowly getting my head round it all....

    Thank You Xx

  • I have serious nerve damage in my hands and fingers due to stenosis and radical surgery. The meds don't help at all. I live in France and would like to try sativex which is a canabis mouth spray which is supposed to be effective for neuropathy.

    Unfortunately they won't prescribe it here except for MS but perhaps you could get your GP to let you try it.

  • Thanks Suzyhayes,

    I'm in Scotland, with all my symptoms, they did think it was MS, but MRI showed disc in neck, after both Ops the spinal cord was so severly damaged the nerve damage is permanent, just trying to come to terms with it all...

    Thank You Xx

  • Hello Jenni57,

    I have read your post and I a very sorry to hear about what you have been through together with the appalling pain that you are left with.

    I am 49 and was fortunate enough to be able to retire through Ill health. I have gone from walking with a slight limp to having to use a wheelchair. I am living with pain as a result of osteoarthritis amongst other things.

    For me, it is about learning to live with a new level of normal and coming to terms with the new you. It is also about trial and error to find out what works for you.

    Part of this process is understandably grieving for the old you. All of this is very normal.

    I have done lots of research in order to understand what is happening to me and why. This is helpful to me psychologically.

    I am still coming to terms with my limitations whilst trying to focus on what I can do. I remember going to the Paralympics and seeing the athletes complete. It was inspiring to say the least.

    My view is that it is vital to get the right support network in place to help to maintain physical and mental health. Moreover, it is about learning to give yourself a break as well as pacing activities.

    I try to focus on what I can do as opposed to what I cannot. Some days this works, others not so much. On really bad days I tend to hibernate when the warmth and comfort of my bed win the day.

    I really do hope that you find something that helps you on a day to day basis.

    This forum is full of wonderful support be people who know from personal experience the effects that chronic pain have on their lives.

    You really are not alone.

    Best wishes,

    Dave

  • Hi Dave,

    Many thanks for your post, I think everything you said is exactly what's going on in my head at the moment....

    How many things that I took for granted and where I find myself now!

    The reality of this pain & nerve being permanent, constant, every minute of everyday, for the rest of my life.....it's hard!

    I agree what a great place this site is and it's so very nice to know I'm not alone and also there are so many people out there, that have it so worse than me, so I really should be thankful...

    Thank You Dave, knowing hugs! Xx

  • I am so sorry. Have you tried the med? You could start with one at a time at lowest dose and see how it goes. I didn't want the side effects of pregabalin so I tried lowest dose of gabepentin, I take 400 milligrams a day and it decreased my leg/foot numbness altogether, no side effects. I take hydrocodone for years. At first I didn't like it, but didn't like the pain more. System got used to it, no side effects but I take magnesium to keep everything moving. It kept me going until I could retire. If you can bear the pain, that's great. That's what I think about natural childbirth, but why go through it if you don't have to? God bless

  • Many Thanks,

    I'm coping with it all at the moment, although it's such a struggle, you are so right tho, why go through it if I don't have to, my stubbornness at not taking meds maybe is not helping.... Xx

  • There are several things you need to do.

    1) Contact AVMA concerning possible medical accident.

    2) See an Alexander Teacher. The damage has been done now you have to develop the skills to manage the damage. These sort of skills are not available on the NHS. Pain clinics are about managing pain via medication in many cases. They don't always give you the tools to investigate yourself and manage the problem.

    3) Find out how to engage in Meditation and mindfulness. It is tool for helping to observe yourself. From observing yourself and how you respond until varying conditions you can develop better body management skills. Better body management means less pain in the long run as you will learn what makes matters worse and what reduces possible painful episodes. This will take time as you have a lot to learn on how your body actually works and this will take time as you have probably nearly investigated the functioning of your body before.

    4)McTimony chiropractor can help by removing some of the muscle cramps that lead to pain and numbness.

    None of points 2, 3 and 4 will cure the problem. All three points will help in keeping the stress on the body's engineering system lower than it otherwise would be. Thus hopefully keeping the stress before the stress breakdown point of the body's engineering system. If the stress on the body engineering system goes above the stress breakdown point the system will break down resulting in everything falling apart.

    Hope this has been helpful.

  • Thanks John,

    So many helpful points in your post!

    I'm angry that in 7yrs I went to GP with what I thought was sciatica and all he did was offer me pain relief ( which I refused ) he never examined me once!

    I'm sure if I had the surgery earlier the damage would have been less and the Op a success!

    Again I have no idea how long the disc in my neck was causing problems, as I never had any pain, only 3 numb fingers and distorted feeling from waist up, which when I touched something cold, it would burn me and when I touched something hot, it was freezing, thought I was going mad!

    I have been looking into mindfulness too, so will continue to learn about it.

    I seem to glory on for a while, then have to have a little blow out!

  • Hi Jenni,

    Have you tried CBT? This may help in managing pain as will mindfulness. I suffer with nerve pain constantly but find keeping myself occupied as much as possible helps to take my mind off the pain. Don't shut yourself away, try to keep friendships going and get out as much as you can. I know it's hard but it does help.

    It sounds like you may have a case for compensation I know it won't help with the pain but it could help ease stress if you have financial worries. I know of a very good firm in Liverpool, UK Law, 0151 203 1104, you could always email or ring them for advice. My daughter got her case sorted very quickly.

    Best of luck x

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