arrow10 Comments
  1. Deborah
    Nov 02 - 3:58 pm

    Past few months, have developed marked swelling, burning and itching in my feet.

    Started with just redness and burning without swelling. Has progressed to plus 2 indentation by finger pressing.

    Scheduled for EMG this month.

    • Cort Johnson
      Nov 03 - 1:07 pm

      You might remind your doctors about chronic regional pain syndrome (CRPS). Good luck!

  2. Chris
    Nov 02 - 4:25 pm

    Would be interested to know who is showing up with positive SFPN symptoms – age of onset, length of illness etc. After 23 years of FM I had no symptoms that looked like SFPN and then five years ago – BAM – new symptoms. Curious to know if this would be result of poor glucose metabolism (not diabetic) related to poor metabolic function.

    Time will tell I guess :)

    • Karen
      Nov 03 - 7:44 am

      Hi Chris,

      I started experiencing SFN symptoms five years ago at age 53 — 20 years after being diagnosed with ME/FM/MCS. A few months after the numbness and burning/tingling/stinging pain in my hands and feet started, I awoke one morning with joints so stiff and painful, I could barely get out of bed. I was later diagnosed with rheumatoid arthritis, and for a while attributed the neuropathic pain to this autoimmune illness. However, both my GP and Rheumatologist disagree. Because, it seems medication is keeping the RA under control. For now, I’m attributing my SFN symptoms to worsening FM as I age.

      I can’t comment on whether or not poor glucose metabolism could result in SFN symptoms. But, based on my experience, new symptoms can most certainly start long after the onset of an illness.

    • Valiant
      Nov 04 - 5:23 pm

      Hi Chris, My symptoms started a few months at most after I became chronically ill at the age of 40.

  3. Valiant
    Nov 02 - 4:37 pm

    I sure hope you’re right about them jumping on SFN. I’ve often said I could handle the rest of the pain if I didn’t have SFN, too.

    I’ve not had a skin biopsy, but I know the symptoms all too well. The pins & needles progressed to a constant severe burning/cold painful to the touch disorder. (A bed sheet resting on my foot can wake me up from deep sleep.) At times it feels like hundreds of bees stinging my calves.

    What I’d give for a treatment I could tolerate. For instance, Lyrica provided much relief but changed my mood drastically and not for the better. Is my researching IVIG therapy worth pursuing? Sixteen years has made me jaded, and I’ve pretty much given up on treatments for SFN at this time.

    Thank you so much for your articals Cort. I’m much more able to comprehend them than I am the lengthy medical journals, etc.

    • Cort Johnson
      Nov 03 - 1:10 pm

      Ouch….that sounds really painful. I know IVIG helps some people – what percentage I have no idea. Hopefully they’ll keep digging into SFN in FM and we’ll get some answers about causes…Good luck!

  4. David Katcoff
    Nov 03 - 10:27 pm

    It was recently discovered by the Stanford team that the chronic inflammation associated with CFS/ME results in a shrinkage of the white matter connectivity tissue in the brain, so wouldn’t it stand to reason that a chronic inflammation of nerve fibers in FM would cause some shrinkage in those fibers? Perhaps the pain is a result of the inflammation from, say, a virus, and the neuropathy is the result.

    • Cort Johnson
      Nov 04 - 6:50 am

      Definitely could be. They didn’t find evidence of increased cytokines in the skin but the search for immune factors that are “roasting” the nerves in the skin is not over :)

  5. Sharise Hoffman
    Nov 05 - 5:29 pm

    I get you periodic emails and thought it was offering more pills offering help. How many out there would gladly give up on this type of anniversity. 17 years with FM and CFS. It has taken thebest years of my life and continues to attack adding pain to pain. How can I be a part ofthe research being done here?

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