Anyone out there with Erythromelalgia?

What level og magnesium supplementation

I take one 2000mg magnesium l-threonate once a day. More gives me diarrhea.

I was diagnosed 5 months ago. I have started on pentoxifylline 600mg 3x daily Nacetyllcysteine 600mg 2x daily,gabapen 600mg at hs, oxycodone for pain, and it helps my fibromyalgia also, voltaren gel cream 4 grams up to 4x daily.

To add to my recent comment. I have flaring I'm my feet, hands, ears and burning like hot lava and it feels like pens and needles or being cut with a sharp object.

I haven't been diagnosed with it yet, but the way my limbs and especially my feet burn, I'm pretty sure I do. Lyrica helps a little, I did read something about taking a combination of gabapentin, lyrica and naproxen actually are more effective for pain but have not tried it. I do use ice to calm my nerves, on the feet under the knee and on my hip on my bad burning side when it gets unbearable. Bonus it calms my tremors as well.

I seem to be at the end of a flare up in one hand. It lasted several months (winter and cold temps). When my body warmed up in bed at night my would become so itchy and hot I could not sleep. Hand was always swollen and often itchy even in the day with blistered skin on fingers. I have been on all suggested meds, including hydrochloroquine; nothing works Swelling is now down but I have cuts and sores between the knuckle and fingernail and raw cuticles. I have not read about this and wonder if is part of the symptoms.

Welcome @linda19. Oh, your hand does look uncomfortable. I'm tagging fellow members @cherman @raebaby @ellen50 @jt67 @susanop @bcoimbra @lacy2 @emishell2022 @wiedd @drolker @susanop @txbren @hotfooted who also have experience with erythromelalgia and can share their tips for dealing with flares.

I'm encouraged to hear that the swelling has gone down. Are your flares often associated with winter and colder temperatures? What are your triggers?

Yes it is usually winter, though sometimes it happens with summer air conditioning. Other than temperature I can’t identify triggers. When my back d’y gets warm I start to get red, hot and itchy. Can be during exercise, but especially bad about an hour after I fall asleep

Try Nephedepine. My erythromelalgia turned out to be chilblains as I've mentioned before. It stopped with the first dose, but I'd been living with it for 20 years. It was horrible. One of the members in my support group with erythromelalgia committed suicide because it was so bad. I sympathize with you. Maybe the drug would help erythromelalgia.
Now I'm 81 and have survived breast cancer. I'm feeling good again and was tromping around on the 22 hilly, soggy acres I live on in California. All good things are possible! Two days ago my airline flight was able to get back home to Templeton, CA from Portland, OR. Everyone applauded when we landed after the pilot's second try through the windshear and we got high fives from the many people in the waiting room as we debarked!

Amlodipine, nifedipine, and diltiazem have been utilized with isolated reports of remission. Use of high-dose oral magnesium has been reported in 12 patients recruited via an informal survey through The Erythromelalgia Association. Of these patients, 61.5% reported varying degrees of improvement.Aug 30, 2018