living with neuropathic pain

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Hi I have been living with neuropathic pain for over 7 and a half years since surgeons damaged a nerve during an appendisectomy. At first i found it very hard to live with but since seeing my chronic pain nurse specialist i have found it much easier. I have tried all of the medication i.e amitryptiline, accupuncture, pregabilin, nerve blocks etc but nothing seemed to help, until i started cognitive behavioural therapy (CBT) with a pain psychologist. I found that using distraction techniques has helped a lot, as well as sharing my thoughts and feelings with others around me. I am now under the care of a consultant in London and am awaiting to have a permanent nerve stimulator implant device, which i cant wait for as the trial of this took away the pain completely.

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  • Posted

    Hi I have been also been living with neuropathic pain for over 6 and a half years following surgery which has given me this unbearable pain in my lhs upper abdomen. Nothing has helped also tried everything you have but been hearing great things about these permanent nerve stimulator implant devices and are interested to learn more about if it could help me and also the right person to approach about it. How you are getting on and experience, I would be very grateful if you could reply.

    Kind Regards

    Jeremy

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  • Posted

    Hi jeremy thanx for writing. I have now had two trials of nerve stimulation and both of them have been very successful indeed. My second trial is in progress now and involves a wire inserted into my abdomen to the damaged nerve, which is attached to an external box where i can turn on/off the stimulation whenever it is needed. I have been very lucky as the stimulation takes away my pain completely for many hours at a time but this is not always the case for many other patients. As these trials have been sucessful i am on the waiting list to have a new device implanted called a mini e-on which has only just come out on the market which uses a remote control, so no external wires needed, which is great. I go to a Hospital in London for my treatment and it was my pain consultant at my local hospital who referred me. If you are not under a consultant see what your GP can do. I hope this is helpfull and would like to know how u get on.

    sarah

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  • Posted

    would love to know how the nerve stimulator has worked as my son is in constant pain all over his upper body (originally started in his arms). he has appointment at a pain clinic soon and would like to fully informed on someones experience of this option
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  • Posted

    Hi Berty I have now had the nerve stimulator in for just over one year now and it is the best thing thats happened. It eventually takes my pain away completely for many hours at a time but have been told that this is rare as it normally only reduces the pain. Other people I have spoken to with the stimulator have had problems getting the right programme of frequency but i found mine near enough straight away so it does differ from person to person. Hope your son gets on ok and finds a treatment that helps him.
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  • Posted

    thank you for your reply, my son has now completed a course at the pain rehabilitation clinic but without any real result. could i be so bold to ask which consultant at which hospital you saw to have the device, as he is to see his consultant next week (11th march)
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  • Posted

    Hi sorry this is proberly too late as it has gone passed your son's appointment date but it is St Thomas's. I would love to know how he gets on.
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  • Posted

    I know your post is 4 years old but I am having very serious problems following surgery 5 months ago and just wondered how you had it actually diagnosed that there was nerve damage.

    Thank you

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  • Posted

    Hi everyone

    As a result of an anterior cervical discectomy and fusion to rectify a partially prolapsed disc in 2010 I now suffer from allodynia in my right hand and forearm (severe burning sensations, cramps and constant itching)and Hemihyperaesthesia on my left side from my chest to my toes. The latter manifests itself in a number of debilitating ways. For example the slightest and I mean slightest touch on my bare skin can be like being kicked by a horse. Getting into the bath/shower or any other water is an extremely painful ordeal. Any "insult" to that side of my body is magnified enormously i.e. I can cry out in pain, sometimes have to in order to do those everyday things we used to take for granted. A brief description of me now: I am 48 and was a very fit sportsman for 30 years, rugby, cricket, squash, waterskiing etc etc. I have always been very physically active and one of those people who just get on with it regardless of pain or injury but this a bridge too far for me. I am mentally very strong and use distraction most of the time as my best therapy but as any fellow sufferers may know constant pain (abnormal sensation at its best) is cripplingly tiring. I am considering setting up either a facebook page and/or blog to bring peoples attention to sufferers of Neuropathic pain as having researched it for 2 years now I have not really found a decent forum in which to post my thoughts and feelings. Pain is a bloody lonely place, a one man/woman war of attrition where I am always ultimately going to lose the war, but win as many battles along the way as I can. I am however always hopeful that a "cure" is just around the corner. My situation is hard to explain to friends and harder still to keep from my family for whom I am the wounded "tough guy". I see how my pain upsets my family so I try to hide it from them. To all intents and purposes I look normal on the outside and I KNOW that some people I know are wondering what all the fuss is all about (I cant work, am about to lose my home etc perhaps it will ring a few bells out there). I would love to be able to share the complexities and anxieties of chronic pain with those in the know and point out a place where those that are not, can get a glimpse into our world in order that there is a greater understanding and awareness.

    Thoughts please!

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  • Posted

    Hi Geordie, me too! Having had arthritic and neuropathic pain for nearly all my life I am not the person I should have liked to have been.

    There are a few forums that I have googled such as Spine Health/Pain Support/Healing Well and a few others I've dipped in and out of over the years. All have tales of horrendous pain and very little relief.

    The trouble is that although it's good to hear other peoples experiences about it all, it can never make you actually feel any better in the long run.

    I also try distraction, this site being one of them. It is truly the lonliest place there is when you are trying to smile through gritted teeth at well meaning people who have absolutley no idea what we are going through.Going off to their busy lives while I and thousands of others go and lie down and miss out on so much living.

    I know people who have had the SCS fitted and wish that they haven't. It is not a real long term answer.Most surgeons would reluctantly agree it does not always do what it says it will and most have to continue with as much medication as ever and usually end up having it taken out again.

    As you probably know most of the meds send you off to planet zog. When you are first offered them you are cock a hoop, being told they will really help you. The world is littered with disappointed people who did just that and found them to be useless or the side effects just too hard to live with. So the pain takes control again.

    I usually only post upbeat and cheerful posts of encouragement. You have touched a nerve (OUCH!) here.

    If you do set up a blog/website, best of luck. I'm sure they'll be loads of people who will be able to vent and be able to share their neuro pain stories. The problem is no one seems to be able to say.. This works and it's great or do this and your life will be worth living again. Coz I know it won't.

    I don't know about you but my docs/consultants take one look at me coming painfully through the door and sigh, because I've tried all treatments, meds and even surgeries and am still here with the same old same.

    Sorry if you think the post is negative. It's just reality and I are old bedfellows these days and I would love to have some positive feedback about neuropathic pain.

    After all we've been to the moon and back, a new med that actually works and leaves us with a brain can't be beyond the boffins that can do that, can it?

    My best wishes to all who read this is, may something come along that will mean we can be pain free and live our lives again one day, Fanny Jane.

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  • Posted

    Hello there, 

    I see this post is quite old, but hope you're still interested in sharing your experience. 

    Thank you for your post - it's the first i've heard of a nerve stimulator implant device. So i'm curious to know how it's going for you and in particular: 

    1. If over a year on you still find the nerve stimlulator as effective for relieving your pain, or has it's impact decreased? 

    2. Does it work on the same principle as a tens machine? I ask because i have experienced neuropathic pain in my legs and feet for over 7 years. I've found the tens machine tends to fire up the sensations rather than relieve them. 

    I hope it's going well for you and you've found pain relief at last. I've found the only thing that has supported me on all levels is Balanced View. It's an organisation that delivers an ancient form of teachings using all the technology available to us in the 21st century. So i can participate from my bed when i need to prioritise rest. I can share more if you're interested, 

    With loving thanks, 

    Raquel 

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