I'm sure you read enough of these you could puke, but I don't know who to talk to about what's going on, and I'm trying to figure out who would be the best person to see about it.
I have lots of different things happening, but one in particular is really bothering me: my hands and feet alternate between being very cold to burning hot with no real logical reason. I was diagnosed with Raynauds maybe a year ago, but I'm not sure that's really the problem, especially since warming my core doesn't necessarily relieve my cold extermities. Usually, my hands are cold, and sometimes my fingernails turn bluish. It's very painful. My feet are even worse: when they get cold, especially in the winter, it feels like I'm standing barefoot on ice. It is incredibly painful and no matter what I do, I can't warm them up. I have a heater under my desk, and that helps sometimes, but not always - and I can't always have a heater on my feet! Sometimes it's almost like having a clubbed, numb foot, but with a burning/stinging pain (like the ice on bare skin). But sometimes, generally out of nowhere, my hands and/or feet will become rapidly hot, swollen, and bright red. The only time it's almost guaranteed to happen to my feet is when I'm sitting up in bed reading. Guaranteed. Something about that position I guess. Other times are when I'm sitting on a high chair or bar stool - something about that position, even if my feet are on the rest, makes my feet swell and get hot, so I have to limit the amount of time I sit on them. Or walking, that'll do it too (assuming my feet aren't cold, in general). Sometimes, the pain is just as bad as when they're cold - stinging, burning, swollen. My hand are worse. Out of nowhere, they get hot, swollen, and red. Sometimes it's only one hand - that happens a lot when I'm doing school work/typing, and it's usually my right hand (dominant) which then interferes with my ability to type and write. While that hand is hot, my other hand is cold and "thin" (as opposed to swollen) - currently my right hand is cold and my left is getting warm and swollen. I have to stop typing to hold my left hand in my right hand to "sooth" the hot, swollen feeling. However, and this is where my endocrine concern really comes in, almost every single night, somewhere around 7pm, maybe a little later, my hands "flare" up. Every night, at that time. And I have no idea why. It makes me think of some kind of hormone change that happens then, but I won't even know where to start with that. So I'm wondering if anyone has heard of symptoms like this or would have any suggestions on what it could possibly be or be related to.
If you know of a board where this would be more appropriately asked, please let me know!
Thanks so much!
Hi, I have something very similiar and have had it since I was a kid. Mine is hot feet only, can't wear closed shoes when its above 50 outside. Have to wear flip flops or sandals. Try looking up Erythromelalgia and see if this looks like it. I think its what I have. Hope this helps, cj
Thanks for the response! I have looked into erythromelalgia, but I'm still not sure if it matches that either. When I first stumbled upon it, I was like "that is me! That's exactly what I have!" But the "typical symptoms" don't match up quite right (not that anyone has to be typical to have a disease). I don't even know who I'd go to to even talk about that with! My guess would be rheumatology, but it's so rare that I think it's going to be hard to find someone who knows what it even is! :P And I know, from what I've read, that there isn't much you can do about it, but I guess I'm just wondering if there could be something else going on, if this could be a sign/symptom of some underlying process that I'm not currently aware of. It's so easy to get caught up in all of the things that are "wrong with you" and start to fear that they're somehow related, and I'm finding myself in that position.
Have you ever gone to a doctor or some other medical provider to talk about EM?
Last edited by Administrator; 02-02-2012 at 12:09 AM.
Hi, I have mentioned this to my Pain Management dr and he looked at me like I had 3 eyes. I have read that some folks go to a dermatologist for it, I haven't yet. I just go to so many drs and mine is not that bad or is not as bad as it was for some reason. I do take topomax and I think that helps it some (take it for other reasons). I have a remote control fan in my bedroom so that I turn it on at night on my feet if I need to. That helps a lot with the sleeping. They start getting hot around 8-10 at night, staying cool between 2-8 mostly. I also have hypothyroidism and Addison's disease not sure if any of it is related. oh yeah, spicy foods will make it worse!
hope this helps! cj
Last edited by noevr; 01-29-2012 at 06:24 PM.
Reason: added content