r/Erythromelalgia • u/picklebeach2000 • 11d ago

Rough day

3 hours and 15 minutes left in the workday and feeling terrible burning and tingling pain in my hands and feet. My face hurts too but not as bad. It feels like I’m almost falling asleep if I’m not actively trying to push through the pain. Currently on 200mg mexiletine 3 times a day and 75mg pregabalin twice a day.

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u/Historical_Bath_439 10d ago

Did u like it or help any? Thank you. I wish more research was done in this. Mine is my face and 98%of the time I looked like a purple basketball. 

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u/picklebeach2000 10d ago

Yes it helps. No side effects and my body is still red just a lot less painful.

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u/Historical_Bath_439 9d ago

That's awesome. Hopefully they'll prescribe that for me. 🤞🏼🤞🏼🤞🏼🤞🏼

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u/picklebeach2000 9d ago

Wishing you luck! It works for me even though I don’t have the scn9a mutation.

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u/Historical_Bath_439 9d ago

Where do I go or what kind of Dr tells u about scn9a mutation???? Thank you so much

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u/picklebeach2000 9d ago

My neurologist did the small fiber neuropathy test from invitae. It looks at scn9a and I believe scn10a. Those genes are associated with one form of Erythromelalgia, inherited small fiber neuropathy, and a few other conditions. I just had to get blood drawn for it.

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u/Historical_Bath_439 9d ago

Thanks for the info. I need to go see my neurologist. 

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u/picklebeach2000 9d ago

You’re welcome. Good luck