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Small Fiber Neuropathy

Posted , 12 users are following.

stubpb
stubpb

Hi all, Yesterday i was told i have SMN, Going to a expert clinic in Manchester in a few weeks to fully confirm it. 

But my nero doctor said its not progressive however everything ive been finding (most usa sadly) is saying it is. 

It started suddenly in my right hand about 7 years and then moved into my left then moved in both up to my elbow and has since then now gone into my right leg.

I lost my job because of it 7 years ago and have been on long term sick since then. 

So while i fully get there is not a lot of info around about this condition my questions are.

1 - is it progressive.

2 - do or can people work with this.

3 - how much of a normal life can people have.

Thanks

0 likes, 28 replies

28 Replies

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  • dee.02533
    dee.02533 stubpb

    Posted

    Hello have you been back to Manchester with any luck on new meds 

    or treatments.

    • viviane93077
      viviane93077 dee.02533

      Posted

      Hi

      ive just joined as my husband has sfn hes had for 2 years now and it has got worse.

      its the pain management we are finding really hard.

      He has it in both legs and feet also across back in both arms and hands also under ribs.

      The pain can fluctuate from burning to sharp and i have to say its been life changing for us.

      ive noticed its been 2 years since you posted,im just trying to reach out to be able to talk to people who suffer this terrible condition.

      would love to hear from someone.

      viv

  • viviane93077
    viviane93077 stubpb

    Posted

    Hi

    my husband has just been diagnosed with small fibre neuropathy after 2 years of chronic pain and a biopsy.

    hes on 30 mg butec patches and 500mg gabapentin x3 times a day also takes anti anxiety ventafluxine which help him to sleep.

    hes pain is in both feet both legs across all of back diwn both arms in neck and around lower ribs.

    weve never been abke to find causejust came on 2 years ago mainly in legs and lower back then just went from there.it fluctuates in sensation sometimes burning sometimes cutting either way hes only really managed to get it to a 4/5 on 4 days out of 7.

    ive heard good information in regard to salford hospital in manchester they have a department that deals with small fibre neuropathy im trying hard to get him refered.

    i would love to hear from people now who are having to deal with this condition and know what theyre experiencing as I have to say nedically we dont feel supported.

    all the best

    viv married to Ed

  • lori85803
    lori85803 stubpb

    Posted

    progressive. no work. life scaled back activities.

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