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

[Foxgal17]

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.

[Cb1963]

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

[nannynese]

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.

[Toplady]

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

[coolpolitealex]

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

[Jtal19305]

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

[Gemin in reply to Jtal19305]

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

[Jtal19305 in reply to Gemin]

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

[jessica1st in reply to Jtal19305]

Hi I am beside myself I have been stuck in my bedroom now for 1year an unable to do much as I have severe nereve pain in both feet and allover my body. I am so sorry to hear of the suffering of so many people these conditons are not new ones an it is about time the nhs pulled their finger out an help all of us and stop making us suffer. I was on Gabapentin but my stupid DR change it to a lower does of Pregabalin which has piles the weight on and now the Gabapentin is out of my system I am right back where I stated. I want to end this misery but am stuck in a mental health rebab. They have called my extremely painful Fibromyalgia with some how symptoms of MS.But I can not get a proper up to date accessesment as I am being discriminated against every where and can not get any investigating or treatment.I have been left suffering and told not to ring my GP by the psycologist!!

I have done nothing wrong!! I am safeguarded against them but do not know what this means in my situation!! I am alone no family and old friends miles and miles away!! I have been left to suffer from chronic conditions that make me scream and cry every day in pain. I have normail everyday illnesses and can not get help!! I am bside myself!! I have chronic symptoms of Isiogluteal bursitis in my sitting bones , hips and possible my knees it is inbareable to sit and walk I feel like I have shard of glass all over my skin, pins and needles, burning , itching, electric shock prickling and electric shocks .I am so bad that I have Allodynia symptom's. There is no way out and I get no support now, They came into my bedroom this am and I felt so unwell I am sensive to light , noise , heat, cold etc etc. Loosing my sight etc and no one will help. It makes me so angry as I never every have been treated so badly throughtout the who NHS an they company who have taken over the mental health rehab. But when the psycologist cam in to my room with the head of care he said you need to get out of bed(after 4 hours sleep) and that its is not helping with the issies I have and making them worse!! Must think I am stupid as I can not so much else. He then said that he is going to get staff to help me walk around the unit go outside etc !! I am so so mad at this, doesn't he think that if I could I would I have been close behind my bedroom doors for ever!! I do not choose to be here like this but now he is going to push me crying in distressing pain around!! I can not sit on most surfaces and on any without severe pain I have to keep moving up and down on a cushion that doesn't really help. Sorry that why there are so many mistakes. Everything throught out mu body hurts!!! I don't know what to do I am so scared!! I will be taking the piss of by other patients and will not beable to walk like they want me to. I have had nothing that helps the pain in my feet, let alone my sitting bones and hips. I have before stuggled to get to the dinning room and was crying an crying and people looked at me as I struggled to keep myself up against the wall. Staff member OT said to me you coming to the dinning room!!! This what I am going through is inhumain and I have no one to go to for help!! I have tried to end my life in the past years just regarding the abuse I have been through but this is the worst thing I have every been through and that it is saying ALOT! I never thought I would ever say that. I can not believe how cruel people working in care are!! This place need shutting down. I have worked in mental health and care myself right through palitive care and I would never ever treat anyone like I am being treated. I don't know what to do!! I have no ways to end my life yet as its a secure rehab!! So sorry I don't want to upset abyone but I don't know what to do. Everyone in Durham seems to be against me I have don't nothing wrong!! I wish I could say I will pray for you all that are suffering to but GOD is not a word I use sorry!! Take care all I am thinking about you all!! so sorry I couldn't reply to any above or below but I am on so much pain doing this.xxxxxxxxx and BIG ward hug!!!!

[jessica1st in reply to jessica1st]

That was supposed to be big warm hugs sorry!!

[jessica1st in reply to Jtal19305]

Hi sos sorry your going through a lot to. Have you found anything that help your legs and feet? I am to on the look out for help an considering a solicitor but am so ill I don't know if I can manage a phone call let alone retain info they may give etc even telling them all my symptoms and problems!! I wish I could help you!! Are you totally unable able to walk? I struggle to have a shower and when I do I have to sit on a plastic box with a towel over it. I am being discriminated against where I am. I just wish the NHS etc would do something about theses horrendous condition's it makes me so so made but I can only send you my best and hope you find away!x

[Jtal19305 in reply to jessica1st]

Hi Jess-

I am in the USA. I can walk and get about. My issue is with persistent nerve (burning, numbness, tingling) in my feet (mainly left foot), left thigh and legs. Surgery did not help me and made things worse in my opinion. I am in taking pain meds and try to watch what I eat as various foods (especially sugars) inflame my pain. Thanks for your thoughts and such. I hope you find some relief. I know how hard it can be but you must push through somehow.

Take care

JT

[jessica1st in reply to Jtal19305]

Thank you Jtal I get all the issses all over my body with nuroptahic pain and in my feet its so hard to walk far at all I go for my meds an back crying in agony and angry cause on one cares its even harder. Take care. I wish I wa back in the states then I would have injured my toe and needed an op as I continued to get ill and then extremely bad and then have these debilitating conditons. Have to go and see if I can find help!! Take care, I loved the Americans they were so nice and friendly to me . xx

[hezzamj]

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

[bluebloater]

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.

[Juliewats]

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.

[Jtal19305]

You obviously need strong pain meds...ask for oxycodone. At least with this you may get some relief to make life a bit more bearable. Nerve pain is just about the worse thing one can have, and I have been suffering from it since July 2015. It varies so much from day to day. I may have a good day and then several bad days or weeks. Thankfully my pain meds help me get through this. You need to get more than Lyrica and Gabapentin. These meds are prescribed all the time but they did not help me at all, only made things worse. I had to wean myself off, and I feel better off of them. Each person is different though. I am trying to wean off of Duloxetine 20 mg which has terrible withdrawal effects. Good luck to you. Get the right pain meds and do not stop until you get them. Also, do not expect much from those who work in these rehab centers. Some people are nice but so many just do not care. I am sorry to say that but it is true. You need to get past all that.

Take care

JT

[Simbistaffy]

Tim med retired NHS got asuaulted by patient c spine damage snap

[Bazer-Sci]

Hi, Really sorry to hear your situation. I had a fusion back in 92 when I was 34 after years of mechanical back pain from a nasty assault in 82. When doing the op they managed to sever the nerves to both gastrostocs and solus. Took me years to get a nerve conduction study done to prove this which I found really depressing. Even now in my early 60s I getting I can exercise them back to health! However, I can walk/work still although I am told its like a penguin and I get depressed when I lie in bed and see the matchsticks my lower leg and feet have become. Tried gaba, pregaballin, amitriptyline, pain gait management, hitting them, etc. I did fine fentany patches and buccal fentany useful but it's a difficult route to go down and have been down the overdose route a few years ago and quite recently again. For me it's a bit like a hidden disability because I don't need a wheel chair, yet thankfully. At a personal level this has been the hardest thing.

Some things you could try (a) try a revitive from boots or the net. Like a disk you put both feet on. They have been the only thing that has helped me with calf/ankle foot pain neuropathy or of what origin. You need to make sure your feet are well moisturised to get the best effect. I also find it useful for RLS. (b) have you had a proper nerve conduction study done to see what's actually going on? (c) is an odd one for me having been very much convinced fentanyl was the only thing that would help is Venalfaxine an antidepressant over the last month this has changed my life I have gone from around 150mg morphine equivalent per day and depressed to no opiates, no baseline pain and very positive improvement in depression. There are side effects like not being able to sleep for days on end and a slightly worse form of RLS but I think they are tailing off.

Finally over the years I have found things that work and then they don't work any longer, I think the only attitude to have is to keep an open mind you may have to adapt what others find useful, do your own research and deal with professionals who don't know your disability and pain any where near the level that you do. I have also noted how some of my muscles and tendons have taken over from the denervated ones I now realise a lot of the my pain was coming from these overworked muscle/tendon groups. The pain clincs never picked that one up.

I hope these ramblings offer some help,

Barry