Anyone out there with Erythromelalgia?

@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!

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!

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!

The burning tingling pain started in my feet mildly in 2017. I was misdiagnosed with neuropathy. But as my symptoms increased, and my life became very limited, I started searching and asking for many tests. I went to a Neurologist and was tested for neuropathy and the test came out negative for neuropathy. From there I searched for blood vessel disorders, And the major blood vessels were normal. I tested for many things, heavy metals and arsenic, blood vessels, neuropathy, and others. I finally found a neurologist who diagnosed me with ERYTHROMELALGIA. I have tried gabapentin, Lyrica, oxcarbazepine, carbamazepine, amitriptyline, Duloxetine, And many supplements. All of these either did not work, Or else the side effects were intolerable. I find that store brand Bengay, ice packs, and elevation are about the only things that have done any thing for temporary relief. Next, I am going to try berberine, it is an over-the-counter supplement that has been researched quite a bit and found to help with neurological inflammation. I find that the “Now” Brand of supplements work the best for any supplement, I know this because I had my vitamins tested With a blood test, and that is the brand that works the best. I take ALA but I have not had any relief for the Neuro pain by taking ALA by Mouth, But I take it anyway. I also tried steroid injections near my spine, with no relief. I have found that Triamcinolone 0.1% cream Twice a day just on the very bottoms of my feet helps some. This is a steroid cream but must be used with caution, but because it’s on the bottoms of my feet where the skin is tougher I do not have to worry about thinning of the skin there. I cannot go food shopping because of the pain, I cannot stand long enough to cook because of the pain, My life has become very limited. I spend a great deal of time on the couch elevating my feet, And I limit the ice packs to 10 minutes at a time to avoid skin ulcers by icing too much. By afternoon my feet are dark red with purple areas because of the vascular part of Erythromelalgia, And the nerve pain is so bad, I just wish it was visible so the doctors could see it. I have learned that it is the micro and small blood vessels that are affected, so that is why the test for veins and arteries comes back normal because they only test for the large veins and arteries. And it is my understanding that the Neuro part is the small fiber nerves, So things like a spinal nerve stimulator device do not work. Has anyone else discovered anything that has worked for them? I live in Florida, so the hot days are so much worse for me, because anything heat related makes my feet worse. It is better for me that it is cold out and my floors are cold.