Well, I'm new here and I actually only found out about this disorder today through google. I have been researching this on and off throughout the years but this is the first time anything has ever really sounded like what I have. When it flares up, it gets extremely hot and very uncomfortable for me. I get it mostly on my hands (and more on my right hand), but also occasionally on my feet as well. The temperature difference is amazing, to be honest. If you feel not even two inches away from where the redness starts, you wouldn't feel much. But moving your hand towards the redness, it starts getting hotter and hotter, almost like my hand was submerged in a boiling pot or something. And I feel a burning sensation as well as pain, and it hurts to make a fist.
One thing with my flare ups is that they last around 20 minutes, sometimes less. Yesterday it lasted for more than an hour, which was very uncomfortable. I've taken multiple pictures of my hands so I'll attach a few. I also think I might have Raynaud's (the middle section of my fingers looked whiter compared to the purple-ish color of the rest of my hand)? Definitely not as severe as most cases, so I'm not even sure if I do have it. I'm still trying to find a doctor, but I thought I'd ask some of you who are very familiar with it. Thanks :)
For what it's worth -- and I'm not a doctor -- your pictures of when your hand is flaring look almost exactly like mine. Especially the way on the back of your hand the fingers are red but it gets blotchier as it moves to the wrist.
If you're interested in seeing a doctor familiar with EM, you might try emailing The Erythromelalgia Association (memberservices@burningfeet.org). TEA maintains a list of doctors who have worked with patients with EM.
Yeah that blotchy stuff made it almost seem like a rash, but it never itches. I had been searching “blotchy burning rash” for months but everything that came up was not what I had. It was either it was a raised rash, or it was itchy or something else. I’m kind of glad you have something similar lol And to be honest I wasn’t expecting a “yes you have it answer”, I just wanted to see if it even looked similar to what diagnosed people have. To me the pictures seem similar, but maybe I have a milder version.
I sent an email over to them, so thank you for your help! I also made an appointment with a rheumatologist for Nov 25 as well, just to get me started while I wait for a reply. So thank you again
Now that I have had Erythromelalgia for three and a half years, from everything I have heard from others who have been diagnosed it seems that EM differs from patient to patient, perhaps depending on whether it is primary or what illness it is secondary to. I have had Raynauds for 50 years and thought I knew exactly what that looks like but was recently told that fingers and toes don’t have to go dead white like mine do. I am uploading pictures of my hands and feet, cold and flaring to give you an idea. I have had some shorter flares, particularly facial flares but on the whole a flare will last for between one and three hours or even longer.
I wish you luck in getting some answers.
Now that I have had Erythromelalgia for three and a half years, from everything I have heard from others who have been diagnosed it seems that EM differs from patient to patient, perhaps depending on whether it is primary or what illness it is secondary to. I have had Raynauds for 50 years and thought I knew exactly what that looks like but was recently told that fingers and toes don’t have to go dead white like mine do. I am uploading pictures of my hands and feet, cold and flaring to give you an idea. I have had some shorter flares, particularly facial flares but on the whole a flare will last for between one and three hours or even longer.
I wish you luck in getting some answers. 403-image.jpg (198 KB)
Thanks for letting me see what your hands look like. I had my doctors appointment today and she said she had one other patient with this disease and that the pictures I took look very similar. It feels good to be diagnosed! It just sucks there isn't much that can be done about it. She did put me on gabapentin, though, and I've been on Effexor for a while which supposedly helps (haven't noticed any difference) so maybe between the two I'll finally get some relief. She also mentioned Lyrica but you have to try gabapentin first or something... I don't know. Thanks everyone for helping me out :)
I can only wish you luck with the Gabapentin as I have not tried it. I have some relief with aspirin but need heavier medication to deal with myclonic jerks and fierce heat rashes which developed along with the EM and so have not dared to try any of the EM medications for fear of turning into a complete zombie. It is psychologically good to get a diagnosis, which in my case took two years, and helped me in my determination to manage it, but mostly without the help of doctors. My own GP said, “Well I’ve never heard it so I’m afraid I can’t help you”. His partner added, “I’ve seen the symptoms before but never made a diagnosis”, and evidently never felt the slightest curiosity to find out what it was and how to help. Those first two years were hell but I can live with it now though I still hate the Winters.
All the best.
Hi. When you said… The temperature difference is amazing, to be honest. If you feel not even two inches away from where the redness starts, you wouldn’t feel much. But moving your hand towards the redness, it starts getting hotter and hotter, almost like my hand was submerged in a boiling pot or something
That sounds exactly how I feel during my flare. The surrounding skin will actually feel freezing to me where it touches the burning. Sometimes I might have a spot on the inside of my finger that’s not burning( crazy weird!) and that spot will feel ice cold to me. When my husband touches it he says that the spot feels normal it just feels freezing because my burning skin is touching it. I found bringing pictures to your doctor is extremely helpful and you will be one step ahead of me by even knowing this exists when you see your doctor so you can discuss this possibility. Take care and keep us posted as you find things out please.
