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Anyone out there with Erythromelalgia?

Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)
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@nancyc777

How are you doing? I have erythromelalgia and I spend most of my day on the couch elevating and icing. I feel like my life has been taken away from me. I have had no success with any medication. I was wondering if you had found anything that works for you or have you been to the mayo clinic? I pray for all of us out there, this is such a debilitating disease, and no one can see the pain but we can for sure feel it.

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dipperlip1 | @dipperlip1 | Apr 23 4:17pm

I have been to Mayo's in Rochester twice in 2006. They ran all kinds of tests and confirmed I have EM. Not much they can do other then prescribe Gabapentin and pain cream. It eventually got better but two years ago came back with a vengeance. My feet und up to my legs get very hot at night and I use Asper cream with Lidocaine. It give me some relief for a couple of hours. Wearing shoes during the warm weather is a torture. There is a lot of research by Mayo's, Yale, the VA and overseas as well but mostly for inherited EM. My is secondary wish an unknown cause. Have your read the articles published by Dr. Jay Cohen. He was a dermatologist who suffered from EM and did a lot of research and piblished some of it. There is also the Erythromelalgia Association on the web and a list of members who all suffer from EM. I e-mailed several of them and none of them is having much luck with a cure.
Good luck to you.

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