Anyone out there with Erythromelalgia?

Thank you for the information. I am going to try and get my doctor to do a referral. My current rheumatologist does not seem to know which direction to go. I am pressing and more and more things are showing up on tests as time goes on.

Mine is mostly on the left as is most pain I have for any reason. I have been dealing with this for more than 30 years.

@rman1 Have you had any luck getting your doctors to help with a referral?

@macbeth1217 Have you been on any specific medicine these past 30 years? I’m kinda of surprised that 30 yrs ago they even knew what it was and how to treat it! Any tips you can pass along?

We are waiting a response from Mayo. Thank you!

My mom and grandfather suffered with it. No one knew what it was but with a lot of research we finally digit out ourselves. I have tried topical creams that were made by a pharmacist, Lyrica and gabapentin. Plus I have taken all types of magnesium Nothing has really ever worked for me. My mother was tremendously helped with Lyrica. And she was the most affected of us all. My daughter is now 40 and having symptoms. I pray for a cure!!

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.

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).

@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?

Hello debinsf8,
Thanks so much for your helpful response!
I definitely will have bloodwork done at least yearly. EM's rarity is probably to blame for lack of better diagnostic testing.
I have read that small fiber neuropathy as a cause can be overlooked. It seems the more I research, the less I know.
I am glad I found this forum. Best wishes!