EM In Family at a Later Age?

Hi Everyone,
I acquired EM 20 years ago this month and I was 47. My brother, who is 62, started telling me last year that his feet were getting really warm and he didn’t know why. Now, just a few days ago he said his feet just keep burning while he has his shoes on. And he can’t wait to get them off when he comes home from work. He is seeing his doctor next week for something else and is going to talk to him about it. I told him to ask his doctor if he knows about EM and told him how to spell it. I have always thought mine to be idiopathic. Is it even possible for it to run in the family but show up in our later years?

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Idiopathic simply means the cause is unknown. With the underlying cause unidentified, it’s possible your brother could be subject to the same risk factors that caused EM to spontaneously appear in you. Idiopathic doesn’t preclude a genetic basis.

Hi CarterDK,
Thanks for defining idiopathic further for me. I didn’t know the complete meaning of it. I hope my brother does not have it but it seems he has all of the symptoms. It’s just so strange to me that he’s now acquiring it in his sixties. Thank you!

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No problem! While I haven’t heard of other instances of familial onset well into adulthood, EM is so rare, and it’s origins in most cases poorly understood, that it can’t be discounted as a possibility. I hope a more benign cause is discovered for your brother’s symptoms.

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Yes, I agree because it is so rare it’s possible for anything to happen. And, you know, he and I have always had the same physical things that go on such as stomach problems…we both can’t drink water on an empty stomach and other symptoms. So, if he does have it I will feel bad for him but at least I will be able to help him because what helps me will most likely help him. Thank you!

I am so sorry to hear your brother has joined our club. My understanding is that some EM is genetic and that is the most studied variant of the disease. I am sure other board members know more on this topic.

I developed it at 52 years old. I have many other disabling
conditions, so I don’t know if I am easily susceptible, or if it’s genetic. I did have swollen hands as a child and the Doctors thought it was rheumatoid, but couldn’t do anything. May be related.

To my knowledge I started the first symptoms at age 68. But looking back now I have to wonder. I always had what I called my sun sunsitivity on my chest - a red, itchy, burned like triangle that appeared as soon as summer started. My father always complained that his feet were itching and his socks and shoes were too warm, no matter how cold it was and he never wanted to wear gloves, ignoring my mothers warnings about frost bite. So, who knows - maybe he had it and I inherited it.

Thank you, Jalika. I have been very surprised by this. I just hope my brother doesn’t get any worse. Stay cool.

Yes, there are so many unknowns. I really feel bad for the younger people who have it. At least with us we were able to have normal younger lives and didn’t get it until we were older. Do you have a special doctor in Seattle who has really helped you? I live in northern Idaho and would be willing to see someone in Seattle if it would be worth it.

Wow, sounds like your father had it. And also sounds like you had it earlier, too. I also had a sign at age 17 and then a few other times in my 20s and 30s but that was it until I was 47. But, if you had to get it worse, it was so much better to get it when you did than earlier in your life…at least that’s how I feel about it. Thank you for your reply!

Hi Carterdk,
My brother saw his doctor this past Thursday and his doctor thinks he has plantar fasciitis. Maybe he has that, also. But, my brother said his feet start burning if they touch anything. Such as when he goes to bed and his feet touch the mattress. Or when he lays on his couch he has to hang his feet off to the side so they don’t touch. He has about an hour and a half drive to and from work. He said the burning gets so bad sometimes that he has to pull over and take off his shoes. I just told him to do what he should do for the plantar fasciitis and then we will see if the burning stops. But, I still think it’s EM.

Plantar fasciitis can be very painful but wouldn’t typically cause the bright red erythema present with erythromelalgia. EM symptoms are alleviated with cooling and elicited by heat. Your brother should be able to tell if he has EM fairly easily. It’s a very outwardly visible condition. A simple test would be to put his feet in front of a heater that’s blowing hot air onto them. If he has EM, in less than 30 minutes that should cause erythema to present itself. The skin will superficially redden, it will be hot to touch (substantially warmer than surrounding tissue), and there should be burning pain. If he then puts his feet in a bucket of ice water, all those symptoms should vanish in about 15 minutes. If symptoms are not elicited with heat and/or are not eliminated by cooling, he doesn’t have EM. If his symptoms do follow that pattern, then he almost certainly does.

Hi carterdk,
Thank you for that information! That’s a great idea. I will tell my brother to do this. I agree with you that I’ve never heard of plantar fasciitis having EM symptoms. I just think he can’t except it yet plus his doctor doesn’t know anything about it. And his pain, such as the plantar fasciitis, is only in one foot and the burning is in both feet. I just saw your reply and thank you for your input. I’ll keep posting what I find out about him.

Strangely enough, I got Em symptoms at 14, I’m now 20 and its much worse, my 17 year old brother will get red hands and feet but no pain or discomfort, he does however get dry skin on occasion that cracks on the back of his hands and he has to use lotion multiple times a day. It is in winter that this happens most often however. I always kind of keep an eye on him, I don’t want him to go through the same things I do. But currently he is healthy, happy and finishing up high school!

Hi Katz,
So his hands and feet turn red and you said there is no pain. But, what about burning? Do they ever burn? I’m so sorry you got it at such a young age. I hope your brother doesn’t get it. Mine would also get worse every year as time went by. They have stabilized in the past 4 years. I hope you are not suffering too much. It was nice to hear from you.

Whenever I see him I ask if they burn or hurt or itch at all and he says they feel fine to him which I’m really thankful for.

I’m finally diagnosed with it and currently my pcp is researching it and gonna get back to me on treatment options when I go back in on the 11th, I’m also getting all my other health conditions under control which helps and I have a wheelchair for when I go out. I currently sit in a recliner most of the day at home, luckily my parents are letting me stay here cause of my conditions. I do swimming and horseback riding for exercise to not trigger a flare.