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januaryjane (@januaryjane)

Sun exposure advice

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

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@merpreb

@januaryjane– It's nice to meet you. Were you born in January? ­čÖé Erythromelalgia is a very rare disease. I've never heard the name but I have heard some people complain about some of the symptoms. I found this on the Nationa Organization for Rare Disease's website so you can learn about it.
Erythromelalgia is a rare condition that primarily affects the feet and, less commonly, the hands (extremities). It is characterized by intense, burning pain of affected extremities, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature.
https://rarediseases.org/rare-diseases/erythromelalgia/
What symptoms do you have that might lead you to think that you might have Erythromelalgia? I'm not sure that you are talking about feeling ill or burning. If you feel ill in the sun, and it's not about burning then I would recommend looking through all of your medications to see if they make you sun sensitive. I was on the beach a while ago with a friend. She had been warned against lying in the sun because she was on an antibiotic that made her sun-sensitive, not only to burning but also to feeling ill. She wound up having to leave the beach and go to her doctor. I would also recommend turning the AC up high to cool the car. I would also make sure that you are well hydrated.

If burning is your problem than I use EltaMD and Tinosorb. I get the tinted ones (I'm an older gal who loves to have even-toned skin. Both work beautifully. But you must re-apply it throughout the day. Sunblocks do not last all day no matter if they are waterproof! There are also lightweight sun-protecting clothing that works. Surfers use them. Just google sun protecting clothing and google will show you a whole bunch of stores that carry them. And it's Memorial Day weekend so there are fabulous sales!

Have you spoken with your doctor?

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Replies to "@januaryjane- It's nice to meet you. Were you born in January? :) Erythromelalgia is a very..."

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!