I’m so sorry. That does look terrible! I can’t say for sure because I don’t have experience with rosacea. EM is often misdiagnosed as rocasea or other skin sensitivity at first as was mine. This is definitely worth taking EM info to your doctor and discussing this with them. I how one way or another you are able to find help soon.
Thanks for replying Alina
I am so glad I found this forum. I will definitely be visiting my dr as soon as I get home. Luckily, I only experience episodes so the flare has died down now and I feel (and look) much better. I hope too, that you are managing your condition succesfully too. All the best x
Alina Delp said:
I'm so sorry. That does look terrible! I can't say for sure because I don't have experience with rosacea. EM is often misdiagnosed as rocasea or other skin sensitivity at first as was mine. This is definitely worth taking EM info to your doctor and discussing this with them. I how one way or another you are able to find help soon.
Hi Lynne: Can you share any links/research you have about a gluten/celiac connection? I have celiac disease, but have never seen any resource (that looks reliable to me, at least) connecting erythromelalgia with celiac. I would definitely imagine that if you have both, gluten exposure could make you more likely to flare. And it wouldn't surprise me if EM could be another symptom or secondary condition to celiac.... Would be curious to see what connections have been made.
This is only my experience, but what I think of as my "celiac" neuropathy is typically very different than what I think of as an EM flare. With the neuropathy, there's no red skin, no swelling, no actual/physical heat... just the burning/tingling nerve sensations. I'd be curious what others that have both experience.
There is a celiac rash called Dermatitis Herpetiformis, though the people I know who have it don't typically get it on their face. They were misdiagnosed with rosacea and other skin conditions before learning the underlying cause of their rashes.
Gina: On a related note, I had a friend with lupus who got rashes on her face on sun exposure. Has that been ruled out?
I had another friend who was not celiac, but had some form of wheat or gluten allergy that lead to a sun allergy, where her face would look horribly sunburned after minimal sun exposure. Somewhat similar to your story, she went to a much more southern country (hotter and more sun), had a horrible reaction, and had to come back to the U.S. She avoids wheat and that has largely controlled her reactions to the sun. I don't know if she ever found any concrete diagnosis, just a means of managing it.
As for EM, I do get what I think are flares on my face occasionally (pretty rare), but I've never had it blister like your face appears to. Just my experience. Hope you find relief and answers!
Lynne said:
Gina, I haven't spent much time on the subject due to many competing factors, but your posting got me hunting for new information again. I found several articles that link gluten/celiac problem with EM ... and something called small nerve neuropathy. Often someone with EM can be tested and found to have this type of neuropathy which is known to involve the face (unlike the more common peripheral neuropathy of the feet, secondarily, of the hands).
There is usually a relationship to a person's glucose tolerance (or intolerance) -- doesn't have to be full-blown diabetes. I've been told several times, after blood testing, that I'm "pre-diabetes." I feel better generally when I cut out almost all gluten and of course, cut way down on sugar of all forms. But I just haven't been successful at maintaining the restrictions long-term. Naturally, when I do both of these things, I lose weight without any additional effort, which is wonderful!
All this has made me wonder how many of us with EM also fit into the issues I just noted: At least sensitive to gluten; have a sweet tooth (maybe just an American expression?) or crave carbs such as bread and pasta , carrying extra weight, and/or may be walking a thin line regarding diabetes? I've read some astounding stats on how many people have diabetes or would be considered pre-diabetic, and have NO idea! Same with kidney disease, especially as we age -- it becomes too common, for a number of reasons.
And on your note about menopause -- my hot flashes/flushes really amped up as I approached it at age 55, but I had night sweats starting at 39. I am now 60, and I still believe I have hormonal swings that bring on a different kind of flushing vs. the EM ... this despite using bio-identical hormone replacement (but can't tolerate traditional estrogen).
Anyway, you may find it helpful to research the connections I mentioned. I know I am re-motivated to get off gluten again, and see if I notice any difference in the EM-type rashing and flushing -- it was a number of years ago when I last tried seriously. I'll let everyone know if I get any relief.