I have a question I need to ask

**ok I am 56 years old I have inherited EM from my Mother she has swelling red feet but not as much pain as I have.so they say that EM comes from a mutation gene thing something to do with the nerves or vascular issues like a defect .so my question is if i was born with this problem,why did it take 52 years to surface I mean I was active in school earning 3 Presidential physical fitness awards ,played outside with dirt bikes very active person with never a hitch of pain in my feet until around 51 years old all of a sudden my feet started to swell turn red and hurt like hell all the way to the point where ice water was the only thing that helped keep the pain down to bearable.so wouldn’t this be something that wore out and needs to b replaced vs something that I was born with ? i had 51 years of normal active body function and then in a matter of a few months couldn’t walk from the pain brought on by this.I had every known test done to check what could b wrong with all negative results. cat scans ultra sounds heart blood nothing wrong with me they said…but there is something wrong otherwise my feet would not b purple and dark red all the time and hurt constantly right…I just have a hard time believing that I was born this way and it took 50 plus years to surface.sorry for this post or maybe i needed to vent a little but after all this time nobody knows why we get it how to treat it and we r left to cope with it the best we can… **

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It’s likely you were born with the mutation and some sort of environmental trigger (such as a traumatic nerve injury or age related degradation) activated it. I asked my doctor a similar question recently and his response was that sometimes younger patients with erythromelalgia have symptoms resolve because the injured nerves heal themselves. Unfortunately, that’s not usually seen in older individuals (over age 40). He did say for me, since my symptoms have largely resolved, that it’s possible they could come back later in life.

EDIT: My erythromelalgia followed a knee injury.


I’ve had problems my whole life with my feet getting too hot and swelling but it wasn’t until I was in my late 40s that I had all the pain. I’m assumed to have 2ndary because I have AS which started when I was 18 but even as a baby my mom said I would always take my shoes off. I can’t remember ever being able to wear shoes for any length of time. I honestly think menopause kick mine up to EM on crack. Thank God I’ve got a combo of drugs that mostly keep me flare free. Still have to wear flip flops year round in Michigan and have a fan on my feet at night. I’m just scared to death the drugs will stop working. It took me a year to find a combo that works. Its nice to enjoy summer and not think about how much you feet hurt every second you’re out there. I hope you get relief soon.

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Hey Andy, Hope your flair has calmed down a bit, for a while, right? That’s the least we can ask for! Your case sounds a bit like mine. Always very active. Loved getting the Prez Physical Fitness awards/patches! :slight_smile: Ect. Mom has it but fortunately, no pain, like your mother. (Oddly, hers would be exacerbated by the sun so we thought that was the cause/sun allergy? until mine came in the winter.) So it’s still a big mystery. There’s so many theory’s out there that nobody knows what to believe! This info below is from the NIH site…
Erythromelalgia (EM) is a rare condition characterized by episodes of burning pain, warmth, swelling and redness in parts of the body, particularly the hands and feet. This condition may occur spontaneously (primary EM) or secondary to neurological diseases, autoimmune diseases, or myeloproliferative disorders (secondary EM). Episodes may be triggered by increased body temperature, alcohol, and eating spicy foods. About 15% of cases are caused by mutations in the SCN9A gene and are inherited in an autosomal dominant manner. Other cases may be caused by unidentified genes or by non-genetic factors. Treatment depends on the underlying cause and may include topical and/or oral medications. In some cases, the condition goes away without treatment.
So who knows! One theory I had gotten from a Dr. is that your main veins sit wrong in your abdomen. (Look up May-Thurner and Eythromyalgia.) They took out a main vein but that didn’t work. Stented me, didn’t work. So try not to do anything too drastic until they are sure…So it looks like we have to just wait and see what will happen. Which stinks! Are there any studies going on?? We could be their Guinea Pigs! So-I’m taking the Calcium Channel Blockers now and notice no difference but being slowed down by them. They say no ice because it can further damage us somehow? (I’m not saying to) But I use very cold water when it gets real bad, IDK if that’s cheating but somedays there’s no choice! Is there anything that helped a little for you? Or anyone else that reads our situation?? Thank you

Hope your feeling better too, JS. <3 Bora Bora always looked amazing! The more tropical the better, right?! But No! Now our retirement dreams have to be waay different. Switzerland? …Wait-I think they only let in the wealthy! Somewhere where it doesn’t get too too hot. That’s for sure! BTW, what is AS, may I ask? K have a good night, what’s left of it…Take Care Now. :slight_smile:

If you inherited it from your mother, I presume you’ve tried a sodium channel blocker? Since the known genetic defect for inherited primary erythromelalgia involves the Nav1.7 sodium channel. A sodium channel blocker was the first drug my doctor wanted to try on me (and it worked, so was the only drug tried).

AS is Ankylosing Spondylitis. Its in the arthritis family. I also have crohn’s disease and of course EM. The trifecta. LOL