hi all you may or may not have seen my previous posts over the years ,i basically woke up on 11th dec 2016 with tingling in both my feet within hours it spread to both knees then into both hands within 12 hours ,its been there none stop since that day i have never felt my hands or legs since that day not even for a second ,ive had every test there is brain mri twice spine mri twice ,2 emgs ,4 nerve studies numerous bloods all normal ,ive seen several neuros 1 told me hed never seen anyone like me in his 30 year career others have said its likely small fibre neuropathy but no idea how its come on so quick and stayed permanent ,im now signed off neuro with pain relief only so im left this way ,its no way to live as i cant get away from it ever its mentally destroying ,im currently on 300 mg of gabapentin 3 x aday with not much relief at all ,it seems to flare i have a few days every so many months when it will be milder i dont change anything during this time ,at the moment its absolutely horrendous ,anyone any ideas or heard of anyone like me thanks in advance
My neuropathy is injury related in both arms and hands. I have had it in my left leg and foot too, probably from my back injury. I have numbness, tingling or throbbing most of the time. If the weather is warm, it clears up , but wet, cold weather triggers it. Anti inflammatory pain killers reduce the pain.
ave you done a skin biopsy for small fiber neuropathy ?
no my neuro refuses as he said it can be negative and i still have it ,also as no cause found its pain relief only so he said no point
Hi Dawn, I do have sympathy for you as i also suffer from Nuropathic pain. Mine is in both knees and down to my ankles. I believe mine is from many surgeries on my knees, i have had knee replacements starting from age 39. I also had surgery as a child several times. I have burning and the feeling of pins sticking in me, prickling and when it is really bad it feels like ants crawling under my skin. Anything touching my skin is uncomfortable, that is all clothes including bed clothes. I obviously have to wear trousers when i go out, i have to distract myself from the horrible sensations in my legs. When i am at home i have to wear only underwear or a dressing gown, when sitting i move the gown off my legs, I take Pregablyn which isn't great but does help me sleep, thou many nights i don't sleep well. My consultants or Gp have no answers. Everyday is the same, not a day without relief. I also suffer from Arthritis and i am limited with my mobility so life is difficult and poor. I live alone which can add to my isolation. I have no answers, Nuropathic pain has no cure. I don't know of anyone else suffering like myself. Be reassured that you are not alone with this. I know i am not alone when i come to this forum. Hopefully someone else on here have some ideas to help with pain relief for us sufferers. Elizabeth.
thankyou for your reply elizabeth ,it is really sad that in this day and age there is no cure for such a horrendous condition ppl are just left ,im the same i cannot stand to wear trousers but have to wear something to go out ,i live in my underwear at home ,as soon as i get bk from shopping im taking my trousers off for relief my legs feel there being strangled in trousers ,its an awful disease changed my life overnight ,i actually feel more sorry for you than myself reading your post as im still very good with walking and haven't had to suffer with surgeries ,i hope we all get some relief sum time soon
If you go to Wikipedia and type in 'Neuropathic pain' there is a five page write up on causes and treatments.
I had a look at Wikipedia but to be honest, it didn't tell me anything I didn't know before and merely confirmed that there isn't really much you can do for it. The treatments mentioned only offer partial relief and some of them could make things worse and give me more problems than I already have.
When I go abroad, I know the intense sunlight will get rid of the neuropathy while I'm there and that's the best I can hope for. I also know that when the weather gets cold, my symptoms will come back. Sometimes ordinary painkillers completely get rid of the pain and sometimes they only reduce it depending on the severity of the flare up. While the pain and other symptoms are annoying, I am able to live with it and accept that my doctor was of no help.
I have also seen recent research which aims to use a different type of drug to turn off the pain receptors which tend to remain in the on position in some people. Apparently, it is thought that these new treatments will be less toxic than the anti depressants and anti convulsants currently being used. However, it will take time for these new medicines to become available
Unlike you I'm not a sun or heat lover and I hate the humidity of places like Hong Kong and Singapore.. When we could travel I tried to go to places at their spring or autumn. Even then it was sometimes a bit much in Australia or Africa. My wife had a neurology appointment the other day and I asked if it was worth my while making an appointment with him as two previous neurologists were of no help. He said that there is nothing he can do for patients affected by Cipro or Flurouquinoles and puts us in the same category as patients affected by chemotherapy,
Strangely enough humid heat doesn't cause me problems because the warmth compensates. It's the dampness from rain that sets off my symptoms because it is cold and more penetrating. Scottish weather is very wet but the south coast of England is much warmer and drier and is a bit better. It's the variability of British weather that keeps the neuropathy active.
Actually we have lived on the South Coast for the past twelve years after having lived in Edinburgh and Surrey. The South Coast may be the sunshine coast but it also gets strong winds that stops it from being consistently warm. It came as surprise to us.
My dad was brought up on the South coast and we all eventually moved from Glasgow to Eastbourne because Glasgow is the damp and wet part of the country and we were getting fed up with it. The South Coast wind can be quite cold especially at this time and really flares up the neuropathy. At least I will be going to Italy next month and will have several months of hot, settled weather.
We are in Eastbourne and it has been very cold recently. When we came to look at houses here in July 2006 it was 92 and no wind. We came again in September and warm with no wind. When we moved in in the December it was raining and blowing a gale. Our neignbour who only who kept it as a holiday home said "It like this all winter" The first thing we did was buy venetian blinds to keep the sun out. Rooms heat up into the 70's without heating on in winter.
Our flat is warm too even without heating.Strangely enough the end of February was very warm and springlike for a few days and all the daffodils and snowdrops came out early. I thought it was going to last. It's been so difficult to know what coat to wear from one day to the next. I have even seen people in shorts! They must be very hardy indeed. I am still in winter clothes.
Since that spell It has been as cold as any winter. Though on this Sunday in 2007 we had six or seven inches of snow that was gone by the next morning and I went to Plumpton races. With the wind howling round our building and the Gulls squaking it sounds like living in a lighthouse.
I think it will be May or June before we see any warm weather.
I hope that you are wrong ! It is much better in Scotland at the moment :-) Our flat faces four sides and fortunately the living room gets the most sun. Changeable everywhere nowadays. A friend in America told me that it was 80F in Colorado one day last week and 20F and deep snow the next.
It's the effect of climate change.
Where we used to live in Surrey was not windy but it is now.
The weather is not the same as it used to be.