Hi @hotfooted, I think more members might see your post if it were in the following active discussion on Erythromelalgia. Like you say it is a rare disorder and it is especially helpful when members can share what helps them. Thank you for sharing what helps you.

> Groups > Autoimmune Diseases > Erythromelalgia
-- https://connect.mayoclinic.org/discussion/erythromelalgia/

Hi @hotfooted, as @johnbishop suggested above, I moved your message to this existing discussion so that you can meet other members talking about Erythromelalgia.

Hello hotfooted, how are you doing with your symptoms? I wanted to let you and the others with Erythromelalgia know that I recently have had success treating my symptoms with Mexiletine. This medication is actually a heart medicine. However, it acts on the sodium channels which are associated with Erythromelalgia also. I am able to live a more normal life with it.

I do have to take it multiple times a day and have blood levels monitored because it has a therapeutic range. I also had an EKG to make sure my heart rhythms were normal before starting the medication. It’s not perfect but it has stopped the flares which cause my feet to turn purple and swell very uncomfortably. Honestly it has been so helpful. Anyway, perhaps it can help someone else with this condition....worth checking out.

After reading others experiences with Erythromelalgia and already dealing with it in my feet, I guess this is where I need to post what's happening with me now. I have tried to ignore the possibility of ER moving to other parts of my body.... preferring to think of my problems as neuropathy related. I have not brought any changes up to my doctor, but have been trying to find someone who could do myofascial massage for my feet, legs, hands, and arm pain. Last week we drove over 100 miles to have deep tissue massage for one hour on mainly my extremities. That night I slept so well, altho with many large torso jerks and leg kicks.. Next day I felt wonderful and walked around the house, just enjoyed feeling so great.. but now the numbness and heaviness in my limbs and even my head between my ears feels rather strange.. I'm guessing the queasy tummy is only my anxiety over what might be happening to me now.. I feel weepy, too.. Thank God for my husband.. he's so understanding and helpful.. He suggested that I needed to move more, not on my feet, but pedal on the exercycle.. get on the balance thing on the floor some.. I did pedal 3 miles already... Thank you for any suggestions...