Connect
← Return to Anyone out there with Erythromelalgia?
Discussion
Anyone out there with Erythromelalgia?
Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)Comment receiving replies
Hello,
I’m at a loss as to where this should be posted, so I decided here in chronic pain. I have Erythromelalgia and I can’t find anyone here in the Houston medical center to help. I’ve tried neurology, dermatologists, pain specialist, vascular/ cardiologist And last but not least my rheumatologist who is treating me for several other conditions. I know it is extremely rare so I’m trying to find a rare disease specialist. Any comments or If this can be forwarded to the correct discussion group would be much appreciated!
Replies to "Hello, I’m at a loss as to where this should be posted, so I decided here..."
Hi @runwthme and welcome to Mayo Clinic Connect. I have moved your message to this existing discussion about Erythromelalgia in the Autoimmune Diseases and Neuropathy groups. Here you can connect with other members talking about Erythromelalgia like @txbren @jcmoffatt @summershaddow @hotfooted @emfm4me and others. If you click VIEW & REPLY in the email notification, it will bring you to the discussion and you can scroll through past posts.
Runwthme, what symptoms does erythromelalgia cause you? How do you manage them now?
@runwthme
You can put Erythromelalgia into the search window at the top of this page (click the little hourglass symbol) and you will find a few places on Connect where this is mentioned. Other people have mentioned having this illness, perhaps one of their comments might be helpful to you. Just reading a very cursory sample of info it sounds like it has similarities to peripheral neuropathy, especially in hands and feet. Although I suppose that could be misleading without knowing more. Best, Hank
Connect
@runwthme Hi, I do know that this illness is discussed within the Neuropathy group on Mayo Connect. Go to that group and scroll the different topics, and you might find it there. I know I have discussed your illness with others within the Neuropathy group, as I have Neuropathy, and people who have it often have the severe burning that I assume you are experiencing. However, unfortunately, I have not read much about anything that helps it. I do have a product that I use that is not approved by the FDA, but it works wonders for burning, stabbing, aching, etc. of Neuropathy. Because this product is not approved by the FDA, the moderators on Connect would rather I private message about this product. Reach me privately at LoriRenee1 for a private message, if you are interested in learning more. My best to you, Lori