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Anyone out there with Erythromelalgia?

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

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@dipperlip1

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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Replies to "I have been to Mayo's in Rochester twice in 2006. They ran all kinds of tests..."

Thank you so very much for your reply and your time. I had been wondering if there was a treatment or a medication that I was overlooking . I guess there is not. I feel bad for you at night time, night time is the worst time when we can’t get sleep. I totally understand the torture of shoes and socks. Dr. Jay Cohen Sounds familiar, I will look him back up. And I will look into the Erythromelalgia association And find other members with EM. Thank you for telling me that you have contacted others and you have found no help also. I did come across this week a med. called pentoxiphylline. It helps a few people by helping with the viscosity of the red blood cells that could possibly get congested in the small arteries that get dilated because of the dysfunction of nerves and blood vessels. It also states it has many anti-inflammatory effects. My pharmacy had to order it so I have not started on it yet. I asked my primary doctor if I could try it after I read about it and she will start out with a very low-dose to see if I have any bad reaction to it. in another article, it states that it really does not do much. I had bad reactions to so many of the medication for the pain. My leg swelled up When I tried gabapentin. If the medicines did not give me a bad reaction, and I was able to take it, they did not help at all. The pentoxifylline Helps the blood flow by making the blood cells more slippery. I pray you are able to find some relief, and that you can get things done on your overgrowing list of things to do. God bless you.