My. Mom had Normal dainty always cold feet, then slowly the EM set in just on her heels, it got worse than better and cycled like that. She tried cytotek (spelling?) and then Amytriptoline (spelling?) cream with lidocaine and her small flares of EM turned into enormous pain full flares and swelling halfway up her calf… She has since been off that stuff for months and the flare is no better, it’s worse. She was so active, exercises Dailey… Now she can barely do activity and spent the majority of her attempted Vacation in the hotel bathroom soaking her feet. Noone seems to be able to help her! Any advice? Ideas?
The worsening of symptoms is likely unrelated to any pharmacological treatment your mom has tried. If she did not find relief with misoprostol (a prostaglandin analogue) or topical applications of Lidocaine (a sodium channel blocker) and Amitriptyline (a tricyclic antidepressant), she should ask her doctor to try another drug class.
Erythromelalgia is a mysterious condition, as treatment options often seem as voluminous as the cases are rare. I’ve found great success using Mexiletine (the oral analogue of Lidocaine, a sodium channel blocker) with Propranonol (a beta blocker). But others on this forum have not had success using those drugs.
Keep trying and don’t give up.
Thanks, I’ll share this with her : )
A doctor named Jay Cohen, who contracted Erythromelalgia himself, has a summary of EM treatment options you might find useful:
Note that he has the medications I found success with pretty far down the list, so success really is variable.
So interesting I read this right away, I emailed it to my mom too… She has tried a bunch on that list but also many things mentioned she hasn’t tried. Interesting perspective from a doctor who got it himself… Thank you -
She is scared at the point to try certain things as the things she has tried have worsened her symptoms.