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Old 01-11-2007, 10:43 AM   #1
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Join Date: Sep 2005
Location: Pennsylvania
Posts: 840
Hope4All HB UserHope4All HB User

Does anyone have this? I've had a problem with my hands as far back as I can remember. My palms are always red and I have purple blotches. I came across this article about "Erythromelalgia" And it fits me to a "T"! My hands hurt really bad when its humid and they ache, burn and I can barely make a fist. I "USE" to put ice packs on them and I would get instant relief, but the article said that is the WORSE thing you can do.

My Rheumy gave me blood tests for my hands ( I go to him for my Fibromyalgia) but all my tests came back fine. Since this is a "Rare" thing, Im going to take the info in with me to my next appt. next month.

Just wondering if anyone out there knows anything about it.


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Old 05-07-2007, 07:31 PM   #2
Join Date: May 2007
Location: Seattle, WA
Posts: 1
hokunani HB User
Re: Erythromelalgia

Yes, I have Erythromelalgia as well. (i'm 17...just fyi)

Though I don't experience the symptoms all the time, some of my "episodes" have lasted up to 5 days. Right now, my hands are pretty much on fire.

unfortunately, I also have reynauds, which is when my hands and feet get too cold, the turn white, gray, purple and blue. and its painful

so ive got two opposites.

how did you find out that you had EM?

Old 07-30-2008, 07:31 PM   #3
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Join Date: Jul 2007
Location: Alabama
Posts: 212
anwis67 HB Useranwis67 HB Useranwis67 HB Useranwis67 HB Useranwis67 HB User
Re: Erythromelalgia

hello. that is a big burden to bear for someone of your age. It is suspected that i also have both erythromelalgia and raynauds. My underlying cause is small fiber neuropathy. Do you have the genetic form of the disease? Do you take any medicines?

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