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januaryjane (@januaryjane)

Sun exposure advice

Autoimmune Diseases | Last Active: Jun 22, 2020 | Replies (8)

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@januaryjane

Yes, its been fun looking at all the sales! For awhile I had unexplained hand burning and redness, also my ears, just minor. About 2 years ago my face started to have these flares. I was worked up for lupus and other autoimmune disorders, nothing panned out. It just got worse, affecting my ears, face, hands and feet. I was doing research and found Erythromelalgia. Everything was spot on. I havent been diagnosed, I havent even talked with a Dr. about it yet. I was just finding out and none of these specialists brought it up. So anyway, it may or may not be it. But it is definately something. These parts of my body swell, burn, turn red, are hot, if they have too much sun or environment gets too warm. Also, caffeine, tiredness, or stress can activate them. Meds are not different. Sunscreen is not helpful for this. It eventually calms down with rest, elevation and cooling. Believe me, i used to use tanning beds, or just outside, this is abnormal. I am seeing a new Rheumatologist next month, so hoping to talk to him about this. Not sure if he specializes in this, but I know of another Dr. that supposedly does, hes a dermatologist. So I hope to get to someone whois helpful!

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Replies to "Yes, its been fun looking at all the sales! For awhile I had unexplained hand burning..."

@januaryjane– It does sound like Erythromelalgia, the more you describe your symptoms. This must be so uncomfortable and frustrating for you. I'm glad that you will be seeing a Rheumatologist soon. At first I thought it might be lupus too. I have been in remission for years with discoid lupus (mostly a skin disorder). Can you have someone do your errands so that you can stay out of the sun? This might be the only recourse you have right now!