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Erythromelalgia: What medications or therapies have helped you?
Autoimmune Diseases | Last Active: Apr 24 3:31pm | Replies (32)Comment receiving replies
Have Erythromelagia Symptoms are an intolerance to hot environments direct sun and cold. Feet and hands get red hot and tingly. Sometimes all over body redness. Flares occur for numerous reasons besides heat intolerance such as exertions from over exercise. Symptoms can wake you in night with tingling.
Curious about other’s experiencing EM. Not many doctors are familiar.
Any experiences and suggestions are welcome.
Replies to "Have Erythromelagia Symptoms are an intolerance to hot environments direct sun and cold. Feet and hands..."
Sorry to hear of your face issues. It’s my feet and hands and occasionally around eyes. I was lucky I guess that my Primary care physician diagnosed right away. This led to several specialists and many tests. Ruling likely EM with no primary cause. I tried a couple drugs early on but couldn’t deal with side effects. I would say I don’t have severe now compared to last fall. I try to stay out of heat and keep temps in house between 69-73. Sometimes in night I get up and move cool washcloth over arms face and neck. When I have a pretty good flare I can use an anti anxiety pill which calms my reaction to what’s happening.
No answers only hoping the syndrome dissent increase in intensity as time goes on.
I hope others will post things that work and support for all of us who have found themselves facing physical symptoms that are so unknown. I do find emotions can being in flares.
Mayo has a clinic but I don’t know anyone personally who has gone there. Lots of try thus and that to find something that works.
@chme, I add my welcome. I've moved your questions about erythromelagia symptoms and treatments to this active discussion
– Erythromelalgia: What medications or therapies have helped you? https://connect.mayoclinic.org/discussion/erythromelagia-medicationstherapues/
I did this to connect you with others living with erythromelalgia like @ellen50 @lacy2 @cherman @dipperlip1 @kellyc14 @emishell2022 and others.
You might also appreciate this discussion:
- Anyone out there with Erythromelalgia?: https://connect.mayoclinic.org/discussion/erythromelalgia/
Are you able to reduce flares by avoiding hot and cold extremes?
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Sorry to hear of your symptoms .. I have written mine here in a different section. No help. Had since June 2022 started burning cheek but no redness then both cheeks sometimes redness sometimes not, out of the blue, no reason. No sun, heat etc. Still have it. Waited 7 months to see dr who helps local dermatologist, he was so nice, but didnt think it was in his field. Then saw Neurologist had seen before, same thing, not his field.. doesnt know what it is. Sooo. Internet searches for me and I put together a binder with about 6 sectins on six things could be and by then mostly at night during night up to 5 hours - took selfies of face but no one seemed interested in seeing. So I have binder with sections now what? Only thing helped a bit was cool pads from fridge not freezer and trying to get back to sleep holding them against face.. sometimes down neck, tops of shoulders etc. Never had allergy testing. Nurse at clinic would not take any action... so now just try and keep bedroom cool and use fan every night but still occurs... like other things, just putting up with it. Drs./N.P.'s are not familiar with this problem unless its Rosascia which first dr. thought not. ... Along with other non-life threatening issues like F.I., P.N>, tinnitus/hyperacusis/inner ear pain etc etc it's a bit much to put up with but nearing 80 I hope not to wake up one day! But for those with this with lifetime ahead of them, WHY is there no knowledge/help just because there is not a simple blood test or such? Maybe check web site: Erythromelalgia.org may help.. best of luck to you. J.