27 months now still have tingling in all limbs none stop
Posted , 7 users are following.
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
0 likes, 34 replies
pippa58442 dawn68509
Posted
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.
derek76 pippa58442
Posted
If you go to Wikipedia and type in 'Neuropathic pain' there is a five page write up on causes and treatments.
pippa58442 derek76
Posted
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
derek76 pippa58442
Posted
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,
pippa58442 derek76
Posted
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.
derek76 pippa58442
Posted
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.
pippa58442 derek76
Posted
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.
derek76 pippa58442
Posted
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.
pippa58442 derek76
Posted
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.
derek76 pippa58442
Posted
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.
pippa58442 derek76
Posted
I think it will be May or June before we see any warm weather.
derek76 pippa58442
Posted
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.
pippa58442 derek76
Posted
It's the effect of climate change.
derek76 pippa58442
Posted
Where we used to live in Surrey was not windy but it is now.
pippa58442 derek76
Posted
The weather is not the same as it used to be.
derek76 pippa58442
Posted
I'm glad that we don't get the winters we used to. I'm sure that the summers when I was a kid were not that bad.
pippa58442 derek76
Posted
My dad tells me that in the south coast winters were much more severe and summers were much hotter when he was a boy.
derek76 pippa58442
Posted
Tell that to the protesters in London.
I would agree with him as the weather was quite different when I went to live in London in 1953. The winters were much worse in Edinburgh when I lived there in the 60's. From 1994 to 2006 when I lived there again we only had snow twice as I remember and it was only for a day and on higher ground. One time I had an early appointment at Murrayfield Hospital and I was the only patient to turn up and had difficulty getting up their steep internal road as they had not cleared it. I went to Portobello later and they were playing golf on a snow free course.
pippa58442 derek76
Posted
I remember regular heavy snow in Glasgow and having great fun with it in the garden as a child. Now Glasgow gets 25% more rain than before.