Hi Abby ~ Gosh, I've never even HEARD of it, much less known anyone with it. i have peripheral neuropathy of the legs/feet, and I hate it, but I think I'd hate YOURS much more!!! Bless your heart, that must be MISERABLE!! i'm wondering if perhaps an anticonvulsant would work for you too, like they have us on -- something like Topamax or Neurontin. These meds are anti-seizure meds but are also used for nerve pain. You might ask your doctor about them. I prefer Topamax as I feel it works better than Neurontin -- plus you don't gain weight on it. Most people even LOSE weight.

Anyway ~ you must be a rare breed!! I've never heard of this condition and I hope you find something that helps SOON. God bless and take care. Hugs, Lee