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Posts (14)

Mon, Jul 6 8:56am · Erythromelalgia in Autoimmune Diseases

Hello @alangrd, I have had Erythromelalgia for about two and a half years now. Sorry to hear your daughter is having these issues. I was initially misdiagnosed, but went to Mayo Clinic in Jacksonville, FL and was quickly diagnosed. It does not sound like that is an option for you. What I can add with regard to genetic testing is that it may or may not give definitive answers. Because it will give positive results for about 80% of Erythromelalgia gene carriers, one can still have the condition and test negative. The test only checks on one particular gene (I believe it’s SN-9). That’s what happened to me. But my doctors still believe that a full X chromosome work up would have yielded positive results.

For your daughter, I can only suggest a log of anytime the symptoms occur. It occurs with exercise for her, but are there any other triggers? Too much salt, spicy food, sugary food, heat/humidity, stress, cardio/exercise, etc. can all trigger flares. Try and take pictures of the flares to show doctors. Also, what time of day is it worse? Erythromelalgia is almost always worse in the evening/night time. Of course, everyone is a bit different but I hope this may help you a bit. Good luck to your daughter on finding relief for her condition.

Fri, Feb 28 9:32pm · Erythromelalgia in Autoimmune Diseases

I brought in photos and a list of symptoms. If you go to someplace like Mayo, you’ll be asked for previous medical files and imaging that pertains to your case. But, my doctor took one look at my photos and said it looked like Erythromelalgia. Mayo tends to see the rare disorders at a higher frequency, so that was to my benefit. They also asked me to go get my blood drawn to rule out any other disorders or identify any other co-existing rheumatoid conditions. Good luck with everything.

Fri, Feb 28 9:25pm · Erythromelalgia in Autoimmune Diseases

For me it took a few months. At first, I was diagnosed with Raynaud’s Syndrome. My first rheumatologist was less experienced. I didn’t agree with the diagnosis, and due to other health issues, sought a consult at Mayo.

Sun, Feb 23 1:26pm · Erythromelalgia in Autoimmune Diseases

Yes, I was diagnosed by a rheumatologist at Mayo Clinic, who I still see. The face/ear flares are similar to the ones in my feet. There’s redness, burning, and skin is very hot to the touch. Sometimes there’s some very slight swelling. I used to get swelling in my feet to the point where I could not walk. If you haven’t been diagnosed yet, take photos of the flares to bring to your doctor. It’s helpful for diagnosis. Hope this helps you.

Tue, Feb 18 10:57pm · Erythromelalgia in Autoimmune Diseases

Hello januaryjane, I do have flare in my hands, face, and ears from time to time. Usually they are in my feet. My symptoms have improved since I began taking Mexiletine. But I have found that certain foods, conditions, and stress/illness can still trigger flares.

Dec 19, 2019 · Erythromelalgia in Autoimmune Diseases

Hello hotfooted, how are you doing with your symptoms? I wanted to let you and the others with Erythromelalgia know that I recently have had success treating my symptoms with Mexiletine. This medication is actually a heart medicine. However, it acts on the sodium channels which are associated with Erythromelalgia also. I am able to live a more normal life with it.

I do have to take it multiple times a day and have blood levels monitored because it has a therapeutic range. I also had an EKG to make sure my heart rhythms were normal before starting the medication. It’s not perfect but it has stopped the flares which cause my feet to turn purple and swell very uncomfortably. Honestly it has been so helpful. Anyway, perhaps it can help someone else with this condition….worth checking out.

May 26, 2019 · Erythromelalgia in Autoimmune Diseases

@babyur4me I am being treated at the Jacksonville Mayo Clinic for Erythromelalgia. At Mayo, I was quickly and accurately diagnosed. I am happy with the care I am receiving from my Rheumatologist. They do not have a magic bullet for this disease, though. Treatment focuses on symptoms, and may vary by individual.

May 19, 2019 · Erythromelalgia in Autoimmune Diseases

@hotfooted Thank you for the tip regarding frankincense and myrrh for neuropathy. I was wondering if you have an update regarding how this oil is working for your Erythromelalgia? Currently, I use a prescription pain cream which contains imipramine, lidocaine, flexiril. It does help somewhat with pain, but it will not stop a full flare. So, I am always searching for something that might be more effective. I also started taking CBD gummies (no THC) in March. They help with pain from this condition and also my Fibromyalgia. But, I don’t think the CBD I take reduces flares. I’ve had Erythromelalgia for a little over a year, and it is slowly getting worse. It worries me, but I have appreciated the recommendations and support from this message board.