I haven't read every blog post, but quite a few and it seems that most people have EM (only) in their feet and not the hands so much.
My feet seem to "pulsate" during the day, while at work, so I'm not able to see if they do the same thing my hands do. During a flare-up, my hands, from the first set of knuckles to the end of my fingertips, become inflamed (hot to the touch, feel like they are on fire and swell). I've never noticed my feet doing this. When I read how most people have this only in their feet, I become concerned maybe this isn't what I have at all. All I know is I am BEYOND irritated with whatever condition I have. I recall my doctor saying several years ago, during a surgery she was performing, that she felt I had vasculitis. I also get migraines quite often, so this all makes perfect sense....
I guess I just wonder if there is anybody else with the same experience as mine....
Hello Rache, EM is a disorder affecting the extremeties so your experience of getting it in your hands could be related to EM. I only used to suffer with it in my feet but as its progresed I've noticed more flares in my hands. I've also noticed really bad itching around my neck/chest area when coming in from the cold. I hope you get some answers really soon.
Hi Rache
I do have bad flares in both my hands and they swell and are hot to touch.I think my flaresare made worse due to the fact I have to wear gloves at work,My feet also swell and turn red if i'm on them alot.But my hands are worse.I don't even want to think about how bad they will be when this summer comes back.I thought it would get better with the cold weather but so far it hasn't.
During the daytime I have it worse in my hands also --mostly my entire palms get red hot and burning and on the back side of my hands it's only my fingers. It's at night under the covers that my feet give me trouble -- hot and burning -- at first I was told it was peripheral neuropathy until I described the redness and swelling of my hands then I was told it was EM. I don't look at my feet that often in the middle of the night and they don't seem to get as red and swollen in the daytime even when they feel hot and burning in my shoes so I wonder if I have EM in my hands and peripheral neuropathy in my feet??? I also have mild Raynaud's and this is all secondary to MCTD(mixed connective tissue disease). The Raynaud's and EM is an interesting combination-- freaked me and my husband out the other day when one finger was red, hot and swollen and the other 3 fingers were cold and blue -- how odd I am!!
Mine started in my hands in August of 09 and did not spread to my feet until the winter of 09/10
Well, mine has now spread to my feet. I've been feeling like it may have, but being at work when the feeling usually strikes, I haven't had the chance (or taken the time) to remove my shoes and look. I finally did last week and the bottom of them, the sides, and up onto parts of the toes were as red as my hands. Not quite as inflamed as my hands get, but the same appearance. I really hope this gets better...it's so frustrating, as I know you all know.... *sigh*
Sorry to hear that it has now progressed. I have increased my medication over the last week and although I am feeling a little doped up (hopefully temporary) there has been alot less pain, flares are now manageable. Fingers crossed you can start to manage yours too.
i have also been suffering with em in just my hands for over 4 yrs, and thought the same thing....but recently i have started having problems with my feet and legs too....was so hoping to avoid that part of it....i love to wear my sexy heels so much.....i am getting to the point to where i cant wear shoes at all... so far there has been no treatment that has worked for me...... the constant pain really gets to me at times....