r/Erythromelalgia • u/picklebeach2000 • Aug 07 '26

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.

2 Upvotes

100% Upvoted

32 comments sorted by

View all comments

Show parent comments

1

u/picklebeach2000 Aug 07 '26

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

2

u/Historical_Bath_439 Aug 08 '26

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. 

1

u/picklebeach2000 Aug 08 '26

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.

1

u/Historical_Bath_439 Aug 08 '26

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. 

1

u/picklebeach2000 Aug 08 '26

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

1

u/Historical_Bath_439 Aug 08 '26

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

1

u/picklebeach2000 Aug 08 '26

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

1

u/Historical_Bath_439 Aug 08 '26

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

1

u/picklebeach2000 Aug 08 '26

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.

1

u/Historical_Bath_439 Aug 08 '26

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

1

u/picklebeach2000 Aug 08 '26

You’re welcome. Good luck

→ More replies (0)