Peripheral Neuropathy/Vasculitis

Discussion in 'Fibromyalgia Main Forum' started by honkers, Sep 25, 2005.

  1. honkers

    honkers New Member

    Hi all this is my first time posting and I'd really like some help with the PN side of this disease. I have been diagnosed with small fibre neuropathy (amongst other things) but wonder if anyone can tell me if they get changes to their hands/legs/feet with this PN thing. Mine go blue/red/white and burn with a kind of mottled appearence - hurt like hell and then stop for a while. Is this vasculitis? It seems to be spreading which is really terrifying as it started in my feet and is now all the way up my legs. I get real crampy feelings in my thighs too as well as feeling generally like sh**. Any reply would be so appreciated as I'm at the end of my tether.
    Thanks Pauline
  2. Windytalker

    Windytalker Member

    Other disorders can cause PN just like with FM. I was instructed by a physician to take L-Glutamine (can be purchased at a health foods store). I started by taking it 3 times a day. Then, as symptoms eased up, I backed off gradually.

    One thing, though, if you continue to take Glutamine when you no longer need it, you'll feel like you're going into a flare.

    But, the longer a person waits to try this, the more possibility of permanent damage. My doctor didn't tell me about this "in time", so I now have permanent damage in my toes (always numb).
  3. honkers

    honkers New Member

    Thanks for all your replies. Have had PN for 4 years which has got progressively worse. Now I'm struggling with a cramping pain in buttocks and thighs which is very different from the burning shooting pains in lower legs. Is this "normal" does any one know? Pauline
  4. lovethesun

    lovethesun New Member

    REynauds syndrome?I'm not sure if that's it.Hope this helps
  5. LollieBoo

    LollieBoo New Member

    It signifies a spasming in the vascular system, usually due to cold and poor circulation. It does often accompany vasculitis, as well as other illnesses. I have both vasculitis and Raynaud's- I'm not sure how they are related, but it is painful, numbing and bears having a doctor investigate. My vasculitis was diagnosed by a skin biopsy, but I had skin lesions resulting from it, and it is a small-vessel vasculitis. if you do in fact have vasculitis, the methods of diagnosis may vary depending on the size of the vessels involved. John's Hopkins has a great website pertaining to vasculitis.

    Good Luck!
    Lollie
  6. puppyfreak

    puppyfreak New Member

    I have autoimmune vasculitis with peripheral neuropathy. The neuropathy symptoms were what led to the diagnosis since the vasculitis doesn't really have any symptoms except in abnormal blood tests.
    My symptoms are similar to yours but not the color changes-definitely sounds like you have Reynaud's.
    Another good site for info is the Jack Nickerson Neuropathy Site. They'll send you info via the internet and mail, too.

    Char
  7. JLH

    JLH New Member

    First of all, WELCOME to our board/support group, Pauline!!

    Are you on Neurotin for the PN? That is what I take and it helps.

    The blue/red/white coloring could be from Raynauds or Lupus, I have the same coloring problems, as well as both these illnesses, too.

    I would be discussing these problems with my PCP, who may want to refer you to a specialist.

    Take care,
    Janet


    Edit: I forgot, I also take Cymbalta, a new anti-depressant which also is supposed to help on neuropathy pain. I certainly has helped mine.[This Message was Edited on 09/28/2005]