When did your symptoms start?

Hi guys, I’m new on this app and I was wondering about everyone’s experiences with erythromelalgia. I’m 17 and mine started in childhood but got worse as I became a teenager. Did you guys always have it or did it evolve at a certain age? I keep reading on the couple of pages that discuss our condition that it is a progressive disease in some cases. It sucks that there is never a clear answer. I always feel so in the dark about the condition. Hope you are all well,

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Elle, welcome to the erythromelalgia community. We’re glad that you found us, although it’s a shame that you too have this condition. The people here are knowledgeable, welcoming and helpful. I hope you will post with lots of questions, and also with support for others.

All the best to you. You can send a message to individual members by clicking on their avatar and then on “message”: use that move to ask for help or to message ModSupport.


My nightmare with this began in my early 50s, although I experienced strange swelling in my hands and feet as a child. I have no idea if the incidences are related. I’m sorry you have to deal with this at such a young age.

I had swelling and redness start when I was about 22 and it has gotten a little worse every year. Now I am 31 and my hands are almost always swollen with a red-ish tint. I could not imagine having this as a child so I feel for you. And welcome!

Hi Elle, mine started in my early 20s, affecting my hands, which made life rather trying as I’m a professional programmer. What I’d say is that environmental modifications seem to have worked best for me over the years. I always have a very cool living space with fans -still air, even if it’s cool, feels like it’s burning my skin and my hands flare immediately - and I’m careful about what I wear to keep my body temperature on the cool side of normal. Fewer flares seems to mean that the flares I do get are much less terrible than when it was more out of control.