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 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 ?

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.

I was first diagnosed at 78. Have positive ANA but repeated tests find no related specific autoimmune conditions like lupus or RA.
Think EM is fully diagnosed with symptoms not tests.

Please keep posting especially when having good days.

I have seen a rheumatologist and neurologist. Neither had a definite diagnosis. I will ask my primary whose first said EM and has been the most helpful for the cream. Thanks

Another excellent resource for EM is called: Erythromelalgia - Fight Fire With Fire. It is an excellent support group, and many of its members have tried "Bob's Protocol" with great success. My small fiber polyneuropathy started in 2017, and then EM developed in 2019. Those two conditions are closely related.