New Here!

Hello All!

I would like to begin by saying this is an incredibly informative and supportive site! Thank you for making this site!

I recently discovered erythromelalgia after years of dealing with it. I'm almost 90% sure I have it. Here is why:

Below is picture of what I have been dealing with for about 4 years. This is a moderate flare, as my hands can get redder. My hands (both at the same time usually) will begin to feel hot, swell, and turn red randomly. There is a itching/tingling/light burning sensation; however, it is not a pain per say...more like "oh hey, this isn't real pleasant!" It's tolerable, but annoying. My rings can get stuck on my hand if they are not removed. I can tell my hands are doing it without looking at them. Cold does help the symptoms a bit. The symptoms can last from minutes to an hour, but never more than about an hour. There is no way I can predict the flares...heat or washing my hands with warm water does seem to trigger it though.

Additionally, my face and right ear will randomly turn blood red and get the warmth sensation. There is no pain during the facial flares.

I have not been diagnosed yet. I work in a very advanced hospital, and have asked multiple doctors and NPs/PAs what in the world is going on with my hands, and they have no clue (even when I ask during a flare). I know I have asked at least 10 good doctors.

Any help or information will be greatly appreciated!

Thank you,



Hi, Ash

Like you, I have not been diagnosed, but I knew something was not right! I’ve had episodes as far back as my childhood years. It does amaze me that no one has a clue what is wrong. I researched for years before I finally found EM. I became determined to figure out what was wrong when I realized my daughter was suffering with the same condition and my sleep was being disrupted every night. I think you’ll find this site very helpful.

I am interested in knowing if you get a diagnoses and what you need to do to get it. My doctor just shrugs of my complaints.

Grama Nay Nay