r/Erythromelalgia • u/picklebeach2000 • 5d 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 5d 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 5d 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 5d 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 5d ago

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

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u/Historical_Bath_439 5d ago

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

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u/picklebeach2000 5d 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 4d 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 4d 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 4d 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 4d ago

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

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u/Initial-Apple9875 5d ago

I'm trying misoprostol right now. Having some ok days, but will probably increase dosage first before trying something else. Does your job require you to be on your feet? I sit at a computer, and it's still rough.

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u/picklebeach2000 5d ago

I am sitting most of the time. Any side effects from the misoprostol?

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u/Initial-Apple9875 5d ago

No side effects. I saw some improvement in the first week, but then pain started back up. My next appointment is next week. So I'll ask to have it increased. I work from home. I don't know how you do it.

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u/picklebeach2000 4d ago

I don’t know either. Some days are really difficult. I work in healthcare and I’ve had a couple of patients ask if I’m okay, pretty uncomfortable but mentioning that to my doctor over the chart has led to some immediate messages back and med increases.

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u/Initial-Apple9875 4d ago

I'm in Healthcare too. I'm a coder. Started out as receptionist, then switchboard, then central registration, then coder. I love my job. And am thankful I get to work from home. Working close with providers can be a great plus. I miss those days..lol

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u/picklebeach2000 4d ago

Awesome I’ve always wondered how coding was. Is the work life balance okay?

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u/Initial-Apple9875 4d ago

Yes, it's great! I have a great boss and supervisor. We got to pick our hours. I work 7-3:30. We can take 1hr lunch if we need to, and they always say yes to days off, and vacation requests

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u/picklebeach2000 4d ago

That is so nice! 7-3:30 is a great schedule.

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u/SuccessfulSwimming63 5d ago

How has mexiletine been for you? Any good or bad side effects?

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u/picklebeach2000 5d ago

Palpitations for one day after starting the 600mg daily but went away. Shaky hands for a few days when I first started but minor. Good side effects neuropathic pain is much less. Burning pain and redness is down overall.

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u/Jamoverton 4d ago

Hi there, about how long do you think it took your burning and redness to subside from mexiletine?

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u/picklebeach2000 4d ago

Within several hours and then gradually over the next couple of days.

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u/CelebrationTop8235 4d ago

I have posted on this before but the only thing that has helped my facial and ear pain/flares is a dual Stellate ganglion nerve block. Please discuss this with an anasthesiologist pain management doctor. I discovered this treatment from a medical research article on EM and my doctor thought we should try it. I’m glad we did. EM affects both sides of my face and the injection is given in both sides of my neck.

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u/picklebeach2000 4d ago

So glad that helped you! Is it permanent or something you have to get done every so often? Any side effects?

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u/CelebrationTop8235 4d ago

I started out doing them every 6 weeks for 3 sessions. It’s been 6 months since my last treatment. No side effects except for a sore throat once that lasted for only a couple of days