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Anyone out there with Erythromelalgia?

Autoimmune Diseases | Last Active: Apr 27 8:41pm | Replies (297)
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@txbren

The erythromelalgia started April 24,2018. It is absolutely stopping everything I am able to do, even walking inside, because of the burning heat & pain. I am searching for new medicine, on Gabapentin now and it does nothing, and researching for a successful treatment!

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Replies to "The erythromelalgia started April 24,2018. It is absolutely stopping everything I am able to do, even..."
txbren | @txbren | Oct 12, 2018

I am now on Lyrica,Symbalta, and asprin. No changes! Anyone have any good solution?

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hotfooted | @hotfooted | Mar 10, 2019

@txbren It seems you and I have been trying the same treatments and searching for answers. Yes, this has definitely changed our lives, hasn't it! I carefully calculate how long I'll have to stand up before starting anything and expect you do the same. And I'm very careful about what I eat.. leaving out almost all sugar except for some fruit. Mangos seem to satisfy my sweet tooth best.

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raebaby | @raebaby | Jan 12, 2023

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!

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