Just Diagnosed

Hello All,

I have just been diagnosed with EM, but I am a little confused. Is it possible that your hand and feet can go also feel really cold and then turn to burning hot. I am under the impression you are only supposed to feel a hot burning sensation. Any advise would be appreciated.

Yes, my EM affected areas can become quite cold.

Per Wikipedia, EM is “a vascular peripheral pain disorder in which blood vessels, usually in the lower extremities or hands, are episodically blocked (frequently on and off daily), then become hyperemic and inflamed.”

I have both . My feet turn purple/black/red/blue and freezing and burning at the same time

Hey I have this exactly. I used to have only very cold hands and feet for some years. Then a year or two ago, I started having the EM. My flares occur exactly when my hands are cold, and then get warmed up a little bit like when I come indoors during Winter time. I have no problem during the summer, when my hands are being warmed all of the time. But if I am not actively warming my hands, they are ice cold, as if they are not generating any heat themselves.

If cold -> warm/hot is the only time you have issues, then try to keep your hands warm , but not hot, all of the time. Please make sure not to hold them on hot water bottles or cups of tea for too long though, because you don’t want to heat damage your hands either in case the temperature sensors are messed up.

My hands are always so icy and I know it may be damaging them further to stay that cold, so I try to remember to hold them to something warm, even just my neck or under the opposite arm, to heat them every 10 minutes or so.

Do your hands also go from purple/blue when cold, to bright red when hot?

YES ! I have the exact same condition . My feet are freezing on top but burning up on the bottoms.

Same here. They are sometimes flaring and cold at the same time, which I can’t even process intellectually. And, if I am outside in the cold and come inside into the warmth, the warming up process is a nightmare. The addition of cold being an issues is new for me. I was diagnosed about 5 years ago.

My feet very almost never get cold. I have another temperature based issue. I have extreme difficulty regulating my body’s temperature. I can feel normal one moment and then out of the blue my whole body is on fire. An hour later, I can be freezing cold. It’s extremely annoying, frustrating and hard to deal with.

My hand go from being a pale white to bright red and blotchy. Also me feet can be freezing Conley and my hand feel as though they are on fire. My skin on my arms are very sensitive to touch if there is a a slight wind blowing on me while walking when it’s cold.

I also experience this and drives my husband crazy. I have noticed that my body temp gets so hot in the morning. I have to get temp down to about 63. If I can get myself to shiver I can usually adjust back to normal ( for me). 68 or so. It’s such a weird condition. My hands are usually always ice cold and red purple and the rest of my body is wet from sweat. My normal temperature is 65-66. Drives me crazy!

Ce que vous décrivez c’est bien EM.

Omg! My feet do the same. I was finally diagnosed 4 months ago & b4 that for 2 yrs no one knew what was wrong. Doctors told me it was in my head and now I’m trying to find help bc it is unbearable pain when there inflamed or hot. I cry like a baby even when I’m not moving a muscle. I’m hoping this Dr. @ the Cleveland Clinic can help bc I’m at wits end. Done w this pain. I can’t take it anymore. I hope u find the help u all need bc it’s hard out there for us & we are damn right WARRIORS! :sparkling_heart: