Hello everyone! I’m Tamra, and I’m here for my 14 yo daughter, who has been diagnosed only by her primary (thanks to my nurse best friend, actually, who told us about EM, and then we told the doc, who agreed). She plays field hockey and dances, and this is becoming increasingly challenging. She gets flares in her feet and hands. She describes it as her feet feeling “claustrophobic,” along with burning.
She is lucky in that her case seems mild relative to so many others. I truly do recognize this. I would love to hear of any potential ideas to help ease her symptoms. At this point she has really only tried elevation and cooling. Being en pointe and in cleats does not make that easy, but we’re trying to figure out ways to work with it.
We are considering seeking out a specialist, and are thinking either neurology or rheumatology (my nurse friend works in rheumatology, but not near us). I figure I’ll call the offices and ask if any of them are familiar with EM. Any other ideas about finding a specialist? We are in VT.
Hello Tamra , I’m sorry about your daughter’s problem. Let me cut tot he chase ! I have had luck treating my E.M. with a Tricyclic called imipramine and Amlodipine calcium channel blocker. Also some studies have shown that the anti-histamine Cetirizine Hydrochloride is also useful to get some level of relief. I use a skin moisturizer and rinse it off after it dries with cool spring water. Controlling the room temperature and keeping her cool is important as well. Fans to cool down the affected area help me too. I wish you all the Best !!!
hi! I am a 16 year old with EM and I golf and swim. swimming is great, I pretty much never flare during it because it keeps my body temperature low, but grass and sun is a bad combination and i always go off when i’m golfing. making sure i eat enough magnesium helps me, I have special thin socks that are good for shoes that you may want to look into for the cleats. elevation actually made my case worse over time, but that’s not everyone’s experience. don’t use cold water though, it could lead to chilblains and worsening of symptoms for a lot of people. EM is really hard, and I hope that your daughter finds a support system and healthy coping mechanisms to deal with it. you can live a full life with em, and it’s totally possible to keep working out and playing sports. have a great day!
I would suggest finding a doctor who is willing to try mexiletine. It’s a sodium channel blocker. Primary erythromelalgia, most often seen in younger people, is caused by a gene mutation that affects voltage gated sodium channels. Mexiletine has been found to block this effect in some people with EM. There is clear rationale for why and how it works. I’ve had excellent success with mexiletine.