Chronic Neuropathic pain from a spinal injury

Hi Im Rach I'm 26 broke my back 7 years ago , I severed my spinal cord and as a result get nerve pain everyday in both feet . I'm partially paralysed from the waist down and use s wheelchair , 7 years of this pain without any relief at all led me to overdose a month ago. It shoots stabs burns strikes tickles in my feet and sometimes legs , but it's everyday and night . I've tried all the tablets/ patches the hospital suggested . Norwich pain clinic discharged me as said nothing they can do and London don't know what to do either . My GP has now referrers me to a special spinal Neuropathic hospital in Liverpool . Has anyone been there for similar ? Or is there any other spinally injured people with this pain ? Rach x

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  • I live in US. Don't know Liverpool at all. I just wanted to send hugs and prayers to someone who is way too young for all this pain. I pray you get relief. God bless you.

  • hi Rak90 sorry to hear about your accident,you'll find an awful lot of conversation on this forum about neuropathic pain,wether it's from diabetes,chemotherapy treatment,alcohol abuse,or even working with certain materials and accidents like yourself,and probably more besides,and even though I've not suffered any trauma I've suffered with the pains your suggesting,its a tricky one to deal with I've done the GP,and pain clinics and I'm no further forward with any relief from the pains,and yes its depressing and its bloody painful 24/7,365 days a year and it's a lonely place to be with the symptoms,everyone who suffers with some sort of neuropathy on this forum will be 100% wishing you a productive and a satisfactory conclusion to getting some relief from your pains,I've considered trying to get on some sort of clinical trials,and of course this carries some sort of risks associated,but I'm seriously considering asking my GP how to go about this,i don't really know how much the nhs has involvement with specific neuropathy clinics or wether it's a general pain clinic that covers all aspects of pain,its a minefield trying to sort it out in your own head,and that's enough to give anyone a wobble in life,so be strong and hopefully you will get a positive outcome,and if you ever want a moan or a rant,people on here DO UNDERSTAND,and we all share and talk about this horrible condition,so best of luck,race care,bye for now

  • Hi Rach, I live in Liverpool and just read your message. I have neuropathic nerve pain due to a nerve being cut in an operation 8 years ago. I've been trying every pain treatment and even been to London for treatment. Then ended up being referred to the Walton Centre Liverpool. You may be referred for the pain management programme. This has Physio. Psychologist and Pain Doctors who all help you how to live day to day with your pain. It is good and very interesting.

  • Hi Rach, I also suffer from neuropathic pain following nerve damage caused by a sacral fracture. I use a wheelchair too, I've just turned 50 and I live in South Wales. I completely empathise with you, the pain is unrelenting and I too have been through the pain clinic/tablets/patches route. I'm thankful though that some of these meds have actually helped a little bit and I'm still under their care at the moment. But the pain continues day and night and in the two and a half years since my fracture, getting used to the fact that the pain is permanent has been extremely difficult.

    I have found it almost impossible to deal with on a physical level but also an emotional one too. This forum is an excellent place to shout/scream/vent and no one will judge you. I can't help with the Liverpool pain centre but I can welcome you to this safe place where we are all in the same boat!

    This time last year, I was almost suicidal and it was only a chance meeting with another wheelchair user whilst on holiday that kept me going. The support of others is essential I think and this forum is an excellent place for that.

    Take care Xx

  • I am so sorry to hear of your plight and you so young, but I'm going to tell you something very important about living with neuropathic pain (I broke my back many years ago) and that is coming to terms with it is very important because no amount of running round to different hospitals and different doctors will have much impact as the pain will sadly not go away unless you dope yourself up and into a stupor and you will quickly get fed up of it.

    Coming to terms is with it is very hard and it will be only you that lives with it and you realize quite quickly that it is a full time job managing this kind of pain and once you realize this, you will then devise your own way through distraction , good pain meds and relaxation because your muscles are tensing up all the time which only causes you more pain.

    I wish there were a magic bullet, but there isn't sadly and other people and doctors and physios and psychologists will also get fed up because they cant alleviate your pain and that makes their job harder because they have no answers because they want to see benefits from treating people and people with this kind of pain are really untreatable only with pain meds and attitude can make a certain difference in how you manage it.

    Sorry if this is a bit blunt but I've been down this road and pain is blind to everyone but you, no matter how they tut in sympathy in the end they will tire of this and will avoid you because they can't help.

    But you can and will manage it in your own way, I know you will and with that I wish luck and determination, all the best Alex

  • Hi Rachael. I live in the USA. I had back surgery regrettably about 2 years ago. I had severe stenosis and a bulging disc. I had a t12 l1 laminectomy and disectomy facetomy with fusion and hardware and a left side laminectomy at l2 l3. I awoke from the surgery with burning pain in the sole of my left foot. The pain was excruciating. I ask the surgeon and he played it like it was nothing and I should just shake it off as if I stubbed my funny bone or something. My ability to walk was not affected but I have had burning pain in both feet with the left being worse and dysethetic pain in both lower legs. I still have the pain but it has diminished from the super severe form to just the bad form. I take medication and it does help. I never got an explanation from my surgeon and other doctors and surgeons I have seen since cannot or will not explain why this happened. If you want to know more just let me know.

    Jerry

  • Sounds like you have chronic regional pain syndrome which is a horrible condition I have it currently on pregabalin which helps but doesn't take pain away completely I was diagnosed 12 years ago after having surgery to remove my gallbladder I suffered nerve damage to my back it's very difficult to diagnose I had 18 months of tests before hand I had an isotope bone scan and that's how they found out what it was

  • Hi again.

    I don't think I have CRPS although I must admit I'm not fully educated on CRPS. I thought that CRPS was associated with color and texture changes of the skin. I have a dysthetic pain which I describe now as diffuse surface burning of my lower legs and both feet. It gets worse if sit a lot and better if I rest and take my pain meds. I was on lyrica and it did not help. I'm now off. Please tell me the things i should look into? I appreciate it.

    Jerry

  • Hi Rach,

    I am sorry to hear you are in so much pain.

    I believe I have nerve damage caused when the hospital carried out a facet/sacral joint injection. This is what I was told when admitted to A&E as I couldn't cope but sadly no one will confirm this.

    Anyway I have now been referred to Pain Management at The Walton Centre in Liverpool, which is what I assume they are doing for you. My first appointment is next week so if you would like me to let you know what happens and what they do I am happy to let you know. Just let me know.

    H x

  • Is it the Walton centre . Try and get on their pain management programme if you can. What is wrong with Guys and St Thomas's who do the pocedure too. What about the John Radcliffe.

  • Hi rach .im had a spinal op.inmay 2009 left me with nerve pain in feet constant twinging .burning so horrible .and the doctors just say.ther are no tablets .i takelycra but they dont help . Everyday its a nightmare 😢 im going through tough time just now.

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