Hi, my name is viv50! Small fibre neuropathy — Scope | Disability forum
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Hi, my name is viv50! Small fibre neuropathy

viv50
viv50 Member Posts: 3 Listener
Hi
I’m reaching out to anybody with small fibre neuropathy.
my husband was diagnosed 2 years ago.It just came on out of blue.
burning sensations and sharp pains in both legs and feet all across his back both shoulders arms and hands also under ribs.
we are under pain clinic and neurologist at kings in London.
it’s really hard managing pain and have tried so many combinations.
we would love to be able to talk to other suffers and their experiences as we are feeling so lost at moment.

Viv and Ed

Comments

  • Ross_Scope
    Ross_Scope Posts: 7,507 Scope online community team
    Hello @viv50

    Welcome to the community, thanks for joining. I'm sorry to hear of what your husband is going through but I'm glad to hear he has some support in place. Have you explored all avenues of pain management with is GP?

    It seems as though support on the internet is quite limited after a quick search, but have you tried Facebook groups specific to the condition? This one for example is a UK dedicated group.
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  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    edited August 2021
    Hi @viv50 - and welcome to the community, Viv & Ed. I have some understanding of small fibre neuropathy, as altho I didn't think I had it, I was referred to the National Hospital for Neurology & Neurosurgery, London to see a neurologist with an interest in SFN. He agreed I didn't have it, but was unable to give a diagnosis.
    For some years I'd had the burning, prickling pain, orthostatic hypotension & dysautonomia, so some similarities with SFN, but mine is of central nervous system origin, rather than peripheral.
    The facebook page Ross linked to, if you haven't come across it before, may very well be helpful. From my own experience I went around the gamut of pain meds, & the only one that dampens the pain down a bit is Pregabalin, but, as I say, my problems are of a different origin to your husband's. My best wishes.
  • viv50
    viv50 Member Posts: 3 Listener
    Thank you so much for replying to my call for help.
    Eds going to have a biopsy soon but don’t know where we will go from there.He takes so much medication and it only nudges his pain.
    thank you for tha link I will try that too.
    many thanks
    viv

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