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Anyone out there with Erythromelalgia?
Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)Comment receiving replies
I am new here, and it appears the common thread is the lack of answers!
You said aspirin had no effect on your EM, and therefore primary was ruled out. Does that mean if aspirin had worked, that it is probably primary?
I developed symptoms three months ago. My bloodwork is normal, and I am more confused than ever.
Replies to "I am new here, and it appears the common thread is the lack of answers! You..."
@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?
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Hi wildflower1948,
I can relate to your confusion, as I went through a phase where I just could not believe that there were no better diagnostic tests than trial and error with different treatments. I've had symptoms for 4 years now. Based on many articles I've read and according to my doctor, if you respond to aspirin, then it is likely primary EM. My doctor had me take 325 mg of aspirin daily for 2 weeks, and it had no effect. So the assumption then is that it is secondary to some other disease or syndrome, which is why it is important to get your blood tested at least annually (I would prefer more frequently).