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Anyone out there with Erythromelalgia?
Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)Comment receiving replies
@wildflower1948 Welcome to Mayo Clinic Connect. I’m glad you found our site! Yes, autoimmune diseases can be very confusing. Several of them seem to have similar symptoms but they are different. In my case, all the symptoms were GI related, but the problem turned out to be in my brain. Go figure. It took a great neuro-immunologist to figure it out.
This article from the Autoimmune Association is good and may have some tips for you.
https://autoimmune.org/resource-center/diagnosis-tips/
Do yourself a favor and read through this entire discussion —lots of good information. There are also other discussions about EM and they are pretty easy to find. Just go to top of this page and find the ‘autoimmune diseases’ and click on the button. That takes you to the main topics list for autoimmune diseases. You’ll see a search box. Type in ‘Erythromelalgia’ and hit a search button. Lots of different discussions will come up.
Do you think that you may have EM? What symptoms are you having?
Replies to "@wildflower1948 Welcome to Mayo Clinic Connect. I’m glad you found our site! Yes, autoimmune diseases can..."
I want to tell you that I spent last evening reading links you suggested. I also did a search here as you suggested.
I have not been diagnosed with EM. I live in a small town and doctors are not familiar. So I have been debating about seeing a specialist, but not sure what kind.
One thing I read is that the sooner EM was diagnosed, the better. I am not sure why that is. I am 75, and reading about those of you ' youngins' dealing with this breaks my heart.
Again, Becky, thanks for your help!
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Becky, this is so helpful! I will follow your advice and read all I can on EM.
About four months ago I was taking a bath and suddenly my hands turned bright red and the burning was awful. I had been taking a B12 vitamin and realized the dose was tons over the RDR. I thought maybe I was having a reaction from the cobalt which is in B12. I quit taking it immediately, but that did not stop the redness and burning.
I had bloodwork done that was normal. My feet are now turning red also when I bathe, even in warm water. So far I only have symptoms when I do dishes, bathe, etc.
Thank you again for your help!