Erythromelalgia: What medications or therapies have helped you?

I’m using the ketamine, lidocaine, amytriptoline cream. I get it from a compounding pharmacy and yes it is expensive $85 a jar. It does help. But doesn’t stop it. I also have “ ice socks”. Buy them on Amazon.
Take gabapentin 300mg 3x day. I think I need more at evening dose . I sleep with ceiling fan, tower fan on my feet and keep the heat low in my house( 63 degrees) .

Thank you for sharing your experience

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.

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.

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?

I have Erythromelagia also. I posted my treatment with a special cream in a prior post . It does help me . Try to find a Rheumatologist that will examine and treat you . I see a Rheumatologist at Johns Hopkins in Baltimore MD . Where do you live ?

...thing for me is no diagnosis, saw dermatologist, no go: saw neurologist; not go.. Nurse Practitoner said taking no action. I have read some info. re Erythromelagia and I think Erythoromelalgia - similar - and sometimes feel I have that; then read something about Lupus.. or something else so put a binder together with about 8 different things it could be including food or medication (even glaucoma drops) but no one seems interested in looking at it. Mostly face and even nose gets red and a few spots that come and go; but cheeks and thru last night seemed the pain was more scaling than burning and even across my lips: have given up on help - took some photos of when face esp bad thru night and were of no interest, but burning even when no redness; so odd. Soooo try keeping bedroom cool, fan on, window open or a/c but have noticed lately if outside and even short amount of sun or heat then get it more during day. Tomorrow night I saw a Zoom on Lupus in Ontario so although have not been told I have it I joined hoping to hear or see a presentation that might have my sympptom or even a question period. I have had this almost daily for over a year no Rheumatologist where I live and closes probably Toronto and travelling with F.I. is almost impossible... could be worse but with other problems is bad enough; thoughts go to others suffering and no end in sight.... 💜🦋💜

,.. just wondering if our issues , overlapping symptoms , could it be possible to have two or more similar illnesses at the same time that make body parts, mainly it seems feet, but face too? I feel like heat provokes but not all the time; sometimes food but never tested and I find hard to keep track as so many ingredients in foods today unless eat really plain foods... and cant eat a lot of veg and fruit re f.i. ... and then rosascia or p.m. or EM, even wondered about the air around where I live ! one starts to get desperate or even overly focused on "what can it be, what can I do about it? and then the stress makes it worse.. also is it odd to get this at age 78? lots of good suggestions in above comments.. thanks and wishing everyone some extra help in dealing with it all... J.

I think my condition consists of several different things. My feet have some neuropathy so are cold periodically through the day. I consistently use warm baths for them. My feet get typical EM symptoms why they get hot in shoes. And feel. Burnt. My EM hits my hands periodically throughout the day and cause most irritating tingling. My face shows Em particularly with emotional issues. I thought I was getting past it all from months of agony last fall including trips to,ER. But as summer came things came back or I was not able to control adequately environment.
Food. Wine or beer even one bring on problems. Very spicy food and dairy are issues. Whether they contribute to EM or just make me feel bad is a guess.

I’ve have so many tests that haven’t defined much. I accept my drs diagnosis if neuropathy and EM.

I look to these forums for things to try or ask about and for company in misery.

Empathy to us all.