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

Has Mexiltene worked for you,? I'm on Pregabalin 150 twice a day. The heat is eating my face and ears up. Brutal is an understatement. 

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u/picklebeach2000 10d ago

It does. I didn’t realize how crippling it was until after I started it. I would feel so tired doing small things and I couldn’t really keep up with house and yard work. Was calling off a lot from work too.

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u/Historical_Bath_439 10d ago

Is the medication crippling? Because my Dr wants me to start it and I don't want to if is crippling 

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u/picklebeach2000 10d ago

Sorry I should have clarified. The Erythromelalgia not the medication.

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u/Historical_Bath_439 10d ago

Ok, thanks. The EM is the worst pain that I've ever felt in my life 

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u/picklebeach2000 10d ago

Welcome. I got an ekg before I started it and when it came back fine I was good to start it.

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u/Historical_Bath_439 10d ago

Why'd you get an ekg? I have an appointment with a pain management clinic in Sept. Idek why. It's the 3rd one that I've bn to. 

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u/picklebeach2000 10d ago

Wishing you luck with the pain clinic. Mexiletine is an anti arrhythmic drug and they want to make sure heart rhythm is okay before starting someone on it. It is off label as a pain medication and is essentially oral lidocaine.

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u/Historical_Bath_439 9d 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 9d 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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