Hello everyone,
Excited to have found this group! My journey began 7 years ago three months after having neck surgery for cervical stenosis. I began to have severe fatigue, a rash that resembled livedo, joint pain, cold feet and cold hands with intermittent redness, burning and tingling in my feet. Autoimmune panel negative except for a slightly positive ANA 1:160. I saw a rheumatologist who was rude and angry because I was there (last time I saw rheumy and have no desire to go back). I did get a diagnose of mild raynauds and eventually neuropathy. It wasn’t until a few months ago when I had a severe flare with my hands did I realize that it was EM. About a year ago I started running for the first time since having neck surgery. It was then that I started noticing the burning pain that would start halfway through my run and they would be beet red afterwards. Anytime I would be in a hot environment or out in the direct sun for awhile my feet would get very red and burn like fire. I just chalked it up to neuropathy and suffered through it. After it started happening to my hands I went to dermatology and they did a biopsy on my hand but they couldn’t test for small fiber neuropathy which was the point of the visit so that was wasted money. She also tho got it was EM but offered no guidance except that I should follow up with rheumatology. My primary doesn’t know how to proceed and I told her we will wait until more things begin to malfunction. I work in healthcare and I know that with an ANA that low no one is going to get excited. I am convinced I have some form of an autoimmune problem. I have researched raynauds quite a bit and as everyone on here knows, EM is often associated with this disorder so perhaps this is all I have. I have looked at a few posts and it seems that some go to neurology and I’m considering this option. My hands stay red, my feet usually burn every evening but I elevate them and that always helps. I’m just glad to connect with others who have this condition hoping I can find guidance on how or what to do. My legs ache every day and pain is significantly worse the next day if I have ran and caused my feet to flare. I do not want to give up running but I have been reading that someone with this condition should avoid excessive exercise. (Sigh) looking forward to hearing from everyone.
I exercise vigorously and find it to be beneficial. However, I am fortunate enough to have found medication that well controls my symptoms. I am usually pain free.
If running is intolerable, perhaps try cycling with a recumbent stationary bike. Your legs are not in a dependent position during the exercise and blood is more easily returned to the heart. It’s just my hunch, but since erythromelalgia is believed to feature excessive vasodilation, I think blood actually has trouble returning from the extremities to the heart in people with EM. That’s why it’s better during movement. Skeletal muscle contractions during movement help force blood back towards the heart. Once the movement stops blood starts to pool.
It’s unlikely that it’s an auto-immune problem itself. Research has shown erythromelalgia arises from hyper excitability in voltage-gated sodium channels.
Hi @CarterDK
Thanks for the info! The main reason I lean toward an autoimmune issue is because individuals who develop Raynauds after age 35 is usually secondary
to something else. Primary Raynauds develops earlier in life. The EM is secondary to the Raynauds. What medications have you find to be helpful? My blood pressure usually runs on the low side so I have been hesitant to start on the vasodilators.
I think it would be very difficult to know where Raynauds ends and Erythromelalgia begins in an individual thought to have both. That’s because Raynauds itself causes reactive hyperemia, which mimics the symptoms of Erythromelalgia. Similarly, research shows a substantial decrease in blood flow to areas affected by Erythromelalgia when not in flare. This makes affected tissue much colder than it otherwise would be and can mimic Raynauds. So, i’m not sold on the idea Raynauds and Erythromelalgia commonly occur together. It’s possible, but with Erythromelalgia poorly understood by most physicians, I think it’s just as likely similar symptoms are being misidentified. Meaning that two symptom sets are in fact just one in most people. That’s not to say you don’t have both, of course, I just don’t know how one would disentangle the two using observational techniques alone.
The medication I’ve found extremely effective is Mexiletine, a sodium channel blocker. For reasons unknown, most here have not had similar success with that medication. When I finally saw a physician who had treated Erythromelalgia before, it was the first and only drug he prescribed for me. Initially he thought I more likely had CRPS. Since I came to him on the belief I had Erythromelalgia, he said “we’ll try this first then.” It basically turned off my flares with just one pill. After 48 hours I was no longer getting them. That was over 2 years ago now.
A selective sodium channel blocker is the only class of drug that has ever been tested in a clinical trial for the treatment of Erythromelalgia. Pfizer ran a phase II clinical trial a couple years ago on a candidate compound. Erythromalelgia has been of some interest to pharmaceutical companies recently, despite being a very rare disease, because they are searching for an effective non-opitate painkiller, the Holy Grail of medicine. A number of pharmaceutical companies are looking at selective sodium channel blockers for that purpose. Because of the role voltage gated sodium channels are believed to play in Erythromelalgia, that has made Erythromalelgia of interest.
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