EM and raynauds

General
1

Hello-

I am new to this site and would appreciate any input. I've always been very sensitive to cold, but over the last few years I am also having issues with hot temperatures. In winter I wear socks around the house, and always wear normal shoes/boots. I have a heated mattress pad I turn on before bed because otherwise my feet are too cold, though I do wake up in the middle of the night to take off my socks.

When the weather is warm, especially when it is sunny, my feet (particularly my toes) get red and overheated. I actually prefer to wear closed-toe shoes if it is sunny as the sun just beats down on my toes. If its not sunny sandals or barefoot is better. This will happen when I'm exercising too, or sometimes when if I'm just walking around. I frequently wake up in the middle of the night because my feet are too warm. My feet, toes in particular, are very red and overheated (warm to touch), but I don't feel pain. I would say it's more of burn if anything.

I am mainly just wondering if this is anyone elses experience? Everything I've read on here indicates that peoples feet are warm year-round, and they are always wearing flip-flops. I am wondering if I don't have the right diagnosis? I've read that people can have both EM and raynauds but haven't really come across anyone with a case like mine. I did unfortunately have some toenail fungus that I left untreated for a few years (kicking myself for being too embarrassed to go to the doctor sooner) that spread to other toes and possibly mild athletes foot too. Did Lamisil and that really helped but it still creeps back up. Any chance this is residual of that? I am doubting it but just throwing it out there.

If my diagnosis is correct my case is quite mild at the time which I am very grateful for. I really feel for everyone on here who is struggling.

2

Hello Swimsus7.

I am glad to hear your EM isn't too painful. It is not always painful for every one. It seems as if every ones EM is different. Some have it all of the time and for some it is only once and a while. For some the pain is severe and others no pain at all. Some people like myself have EM that changes in severity and frequency. Mine can be severe and last almost around the clock and yet other times I would describe it more as uncomfortable. In my case it seems to change not so much day to day but for several months at a time I will be worse then for a few months I will be a little better. Sometimes I can be ok in a 70 degree room and others I need it to be closer to 60 to minimize flaring.

I know some people don't have problems till it is much warmer or they are able to do some exercise before flaring just not for as long as they used to. While some can barely walk. Think of EM like a box of chocolates, You never know what your going to get!!!

It isn't uncommon for those that have EM to also have Raynaud's. I hae both and sometimes at the same time! I will use my freezing hand or foot to cool my burning skin. I noticed you said that you need to warm your feet during the day then they get too hot at night. The worsening of burning at night is pretty typical with EM too.

As far as what causes EM I have no answer. Just like the many different types of EM I believe there may be several different causes as well. For some it is hereditary or primary and for others it is secondary to something else. To name a few it could be neuropathy, autoimmune, myeloproliferative disorder, or a side effect of some medications , That is just to name a few.

I wish I had better answers for you but like you I am still just trying to figure this out myself.

Take care,

Alina