Does anyone else get these little freckle like dots on the spots where they flare?
I’ve had them before - esp early on before I had learned strategies to deal with flares. If they don’t blanch when pressing on the skin, I was told they are called petichiae. They eventually disappeared. For me, they did not indicate any other health problem (besides EM).
That’s what I was thinking I was just wondering if em could cause them. My blood work ruled out secondary causes
Hi Jeremy.
Yes I get clusters of them. My left foot is much worse. They appear after bad flares. One doctor said they were broken capilaries. Eventually they go away.
It’s a bad idea to presume symptoms are being caused by any one condition without a doctor’s confirmation. Most here think they have Erythromelalgia, but that doesn’t mean everyone here does have Erythromelalgia.
I don’t get such markings, but have been told by my physician (an anesthesiologist with experience treating EM) I do have Erythromelagia. I was diagnosed through a process of elimination and subsequent response to a specific medication. My Erythromelalgia is now well controlled, something very few here can say.
Carter I have been cleared off everything secondary but I haven’t had the gene test. I went to the doctor last month when I had insurance he was not a specialist but I’ve been going there for years so he looked into and and did the tests that were available to him to rule out secondary causes. He said I’m the picture of health other than the EM symptoms and my health anxiety of course
But since all causes of secondary erythromelalgia are not necessarily known, it can’t be definitively eliminated absent an alternative diagnosis. Myeloproliferative induced erythromelalgia is the most well understood secondary trigger, but it is not believed to be the only one. Most cases of erythromelalgia have an unknown causation and can’t be classified with certainty as either primary or secondary.
I am someone who ran 50 miles a week, lifted weights six days a week, and had a body like Michael Phelps prior to my diagnosis. The cause of my erythromelalgia is unknown.
I completely understand man. Ive always been a distance runner and was going to the gym 3 times a week and then February rolls by and symptoms hit and the idea of running even a mile irks me. Do you know what the percentage between secondary and primary is? Like which ones more common.
I’ve been getting a red hot ear for a few years now. And I used to always get it after I drank or got hot but I never thought any thing of it. I wonder if that’s EM related. I can tell you for sure I have em. The temperature rises, they turn red, veins dilate. Elevation and cool water relieves it.