Hi, I have EM in the feet, hands and I worry face. I am not sure if it is simply that even when sitting with my feet elevated I still use my hands, like now. But I find my hands are the most affected. The swelling never goes down, the redness begins in the palms but creeps its way to the top of my hands. I also have a difficult time regulating my body temperature in general. I was wondering if anyone else has similar experiences. I have FMS also along with a pretty severe disk issue in my neck so the differences in what pain is what becomes difficult. Any thoughts would be appreciated! thanks michelle
Hi, well i just got back from my rhemutologist, and he has no idea of what the burning in my hands is!!! Like you, the redness/burning is worse in my hands, and i think also its cause i am using my hands more..... He has confirmed that i have fms and like you, i have neck and thoracic problems.... my physio thinks some of the tingling in my hands is from thoracic outlet syndrome, but i dont know.
How long have you had the burning? I am coming up to 3 years from the start of it..... I am much better if i keep cool.
Also though i have trouble with regulating my body temperature. I am older and going thru menopause, but its as if my hands wont adjust quickly enough from changes of temperature.... What have you been trying for pain? My dr. doest want me to try anything but amitryptoline.... to help me sleep better, hope it helps some.
Interesting that we have several of the same symptoms. Have you been diagnosed? I havent, in fact i mentioned the disease to my rhuemy today with no repsonse...... i am rather upset and discouraged tonight, i must admit....dont know how much more pain i can stand..... sorry for venting
elaine
hi,
We do seem to have very similar symptoms. I received my Dx for EM before my Dx for FMS. Excuse the typing my hands are, well, ya no...Anyway, i am not a big Rummy fan as mine told me, literally to get a hobby. I also go to a pain clinic and have been screaming about the EM. I don't actually see the dr at the pain clinic but a NP. It turns out my EM dx has been mis-charted for nearly 4 years now. Huh, the dr will see me now -arg. I found a dr at Standford, a vacular surgon who I believe has also done clinical trials with EM. My primary doc has had the referal for gulp 4 month and is playing pass the buck to the pain doc. It is enough to make one insane.
Mainly, I keep it very cold in my house and keep my feet elevated as much as possible. Of course this has me pretty isolated. As soon as I stand and start to move my feet flare but the swelling is constant in my hands. I am in a flare now so they are also red. Mostly, I am just really confused and would like some answers.
Hang in there. I have had those nights were the pain takes over everything you can think about. While reading some post on here I read a tip about describing or writing about your pain in graphic terms. I draw mine. It really seem to help on those night when you think you can bear no more. Hang in there. Michelle
I have this as well, especially im my right dominant hand. I have to stay cold ALL THE TIME. Any type of heat and i instantly flare, including showering or cooking over a stove or going into the sun. I'm like a vampire. I'm only 22 but this started when I was 17. I live in Alaska and have contacted numerous vascular surgeons, all completely clueless.
I'm not having any problems with regulating body temp in general, but it seems problematic in my affected areas which are my feet. I have not worn even socks in a few years now, anything touching them is a problem. A comfortable temperature is a fine line now and hard to achieve. The comfortable range used to be wider and seems to have narrowed a bit, so my feet are cold when not hot.
Regulating feet temp is pri 1, body temp is pri 2 for me. So regulating body temp is actually only a means to regulate feet temp. I never liked being cold, I was raised in Florida. But when I'm cold, it means there is no fire and I'm ok with that.