I know we've discussed erythromelalgia before, but I wanted to ask again how many of you have it. It came to mind because now that summer has arrived in full force here, I am feeling a lot better in general. I have far less pain, my skin feels better, I'm less stiff, my neuropathy is better (less tingling/numbness/burning), and of course the Raynaud's has calmed down a lot. So that's all wonderful! I hope the hot weather is making all of you feel a bit better too.
The one thing that is difficult about the summer is that I have erythromelalgia. My feet, and to a lesser degree my hands, swell and turn bright lobster red, burn and itch. This happens in hot weather, but also sometimes in air-conditioned places or even during the winter if I am standing for a while or while I'm walking. It also always happens when I take a shower unless it's ice cold, but anyone with Raynaud's knows that that would not be a good idea! When I get out of a warm shower my feet are usually so dark red that they look purple-black and quite swollen. Not very attractive! My veins (especially on the backs of my hands) get puffy and itchy and irritated when this happens and I sometimes get widespread itching and skin irritation.
I've had this issue for at least a few years (5-10), but I didn't know that it was an actual condition until recently -- I just thought I got overheated more easily than other people and didn't realize that it wasn't normal to have such an extreme response.
We've probably all heard that Raynaud's is a fairly common condition. Scleroderma is a rare disease. Erythromelalgia is even more rare. Supposedly it is almost unheard of for a person to have both Raynaud's and EM, and EM has never been positively associated with scleroderma in the way that Raynaud's has. So what I'm really curious about is how many of you have all 3 of these conditions. I'm also curious to hear if you DON'T have Erythromelalgia. I think it might be underdiagnosed in scleroderma patients because we just assume that swelling and redness and pain are part of the disease and don't present our doctors with these symptoms to consider independently.
I just read an article that some of you might find interesting. It is about the connection between EM and small fiber neuropathy. The article is asking whether EM is primarily a neuropathy or a vasculopathy. The researchers can't reach a conclusion, but they do note that people with EM are likely to have small fiber neuropathy (I do as well). http://archderm.jamanetwork.com/article.aspx?articleid=479530
Finally, if you have EM I'd love to hear any tips or tricks for dealing with it! My feet generally feel better after I elevate them. I'm wary of using anything cold to reduce swelling or pain because of the risk of Raynaud's, but I have sometimes run my hands under cool water to soothe them. Also, does anyone know if EM is progressive? I know that it generally doesn't improve and is pretty resistant to treatment, but does it always get worse? I've read stuff about people with EM being confined to bed or a wheelchair because they can't use their feet and of course this is a frightening thought.