I have read that the sun can aggravate this condition. Has anyone out there had success with swimming in a sunny pool? I have also read that this condition may be related to toxic overload and chlorinated pools are not good. Any feedback on this?
When I'm in the sun, I get flares very quickly. I remember going to the beach with my class once, and within minutes, it looked like my feet were sunburned! Someone was like "you better put sunscreen on those!" And I was like, "it's not a sunburn. It's just what happens!" Haha. For me, however, I tend to just push through it. I find it uncomfortable, and I really don't like the way my skin feels when it gets "stretched' from the swelling, but I'd rather be outside than not (and I'm fortunate enough to have a milder form). When I was in LA 2 wks ago, I found putting my feet in the pool felt wonderful. They were red still, but the water really almost distracts you. And since you get that weird feeling when you're skin is in the water too long anyways, it distracted me from the stretching feeling I get otherwise (that I don't like). So I liked it. It was a good compromise. If you can, sit in the shade - that'll keep you at least a little bit cooler. Direct sun sets me off faster, but since the water feels good, I wasn't totally bothered by sitting in the sun. I think it depends on the severity of your disease, the temperature of the water, and how well you can tolerate the sun, and pain/discomfort that may ensue. Give it a try!
I have not seen or read anything about "toxic overload" and chlorine. I've got one article here that lists these drugs as potential causes of secondary EM: Cyclosporin, Verapamil, Nicardipine, Nifedipine, Norephedrine. ("Erythromelalgia: A rare microvascular disease, Victoria Latessa, found in the Journal of Vascular Nursing) It's mentioned that the list is non-inclusive, so I'm trying to access the article that cited these causes. I'll get back to you when I get that :)
A few minutes ago I came across a possible help for you on another EM website. So am copying the response and a possible web site to help I tried reading the web site and it was way beyond me. Here it is..............................................
Since you are so sunlight sensitive, have you guys ever been evaluated for the EPP form of Porphyria? I recently read of someone whose EM turned out to be from that and the treatment for Porphyria worked. A geneticist suggested I get the tests a few years back, and they were not expensive and the GP could order them, but my results were negative. There are only a few reliable Porphyria Labs though, and LabCorps is not good at handling the specimens and can ruin the tests before they even get to the lab.