Getting desperate for a this erythromelalgia?

I get hot, red flushing on various body areas. It can happen for no apparent reason or as a result of certain stimulation (see below). The duration of the flushing seems random...sometimes it lasts for a couple minutes (rarely), to over an hour; on average (I have had many episodes that last 2-6 hours, and several that have been 10 hours+). It occurs on one or more of the following body areas: palm(s), cheek(s), nose, ear(s), eyelids (OUCH), outer forearms, and a patch of skin just above the elbow on the back of my arm(s) about 3"X3" in area. The skin gets very red, warm-to-hot to the touch, and literally feels like sunburn or scalding. It most often happens to my hands and cheeks. Sometimes it hurts pretty badly. The severity has increased slowly over the years. Things that can trigger it are: exposure to heat/cold (stirring something cooking on a stovetop will trigger it in my hand(s), the heat in my house kicking on can trigger it on any area (usually the face and hands); or even short periods of time in cold weather can trigger it on any of the body areas); friction (even very mild) on the body part involved (petting a dog can trigger my hand, and having a hat, phone, or headphones against my ear(s) can trigger it on them); exertion of the body part involved—like blowing my nose can trigger my nose and eyelids; or holding a bag or purse for more than ~30 seconds can trigger it on my hand—it doesn’t always happen, seemingly randomly); or general bodily exertion (usually causes a multi-focal flushing, including all facial areas listed and sometimes hands and/or arm areas).

I will need to find my other pictures to post, but there's one of my face here.

So far, any doctor I mention it to either says they don't know, that maybe it's dermatitis/allergy, or chalks it up to my fibromyalgia.

Any thoughts?

Thanks. :)

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Has your doctor ruled out any of the ailments which can cause flushing creatiVeronica? Unfortunately there is no other other testing to diagnose EM unless you are one of the unfortunate people born with a mutated gene which can be tested for.
Is it helped by active cooling? The other question should be about elevation but with face and hands mostly involved that wouldn’t be relevant. When I elevate flaring hands the veins become engorged, the fingers return to pink but the burning stays the same.
I’m afraid that once you are cleared from RA, Lupus, MS, a platelet disorder, diabetes and a few others it boils down to ‘if it looks like a duck, quacks like a duck …’. At that stage management becomes all important and there are loads of management tips available here, see Cool Tips under useful resources in the banner at the top of the page.
The time before, and just after, diagnosis is really difficult but if it does turn out to be EM don’t panic as there is help out there. If your doctor is at a loss you could print out information on EM and specifically medication from the TEA website or search around here and hopefully your doctor will work with you.
Best wishes

What Nel said is absolutely correct! In particular where she says to point your doctor in the direction of the TEA website. Until I did that I didn't get any joy at al from doctors as most of them have never even heard of it. Once shown this website it was a miracle, suddenly my doctor believed me how bad it is and has gone out of his way to try and help me, whereas previously I was ignored. I already knew I had a few of the things that can cause EM but even so no doctors even considered what this was and I think for the same reason they didn't know about it. I am not there yet, as I haven't had treatment for one of the things that is wrong with me. For me the best place to look was Cool Tips as I had tried loads of the medications and non of them were good for me due to the side effects or more importantly interaction with drugs I am already taking. On the subject of drug interactions if you are given anything to try I would suggest that you look at interactions before taking a new drug.

Thanks to both of you! Since I have fibromyalgia and some other chronic illnesses, a lot of things have been ruled out, including lupus, MS, RA, other autoimmune disease, diabetes (although I do have mild insulin resistance), platelet disorder (and other hematological disorders...but I do have a marker for the mutation of the JAK-2 enzyme, which can cause myleoproliferative disorders--the hematologist said this means I have the potential of developing an MPD in the future).

Since so much has been ruled out for reasons other than the diagnosis of my flushing, I'm leaning toward telling my doctor about erythromelalgia...but I am not known for my assertiveness. :/

Hi there creatiVeronica, we have just finished re-organising our Information for new members page (see useful resources tab at the top of the page) and this has easy links to recognised sites with sections on erythromelalgia.

Why don't you take a look and maybe print some information to take with you to discuss with your doctor.

My experience has been that I get the most open and productive discussions about my own research when my doctors can see where I have obtained my information. It's not productive for any of us to have our doctors note the corner of our records "Dr G" (for Dr Google)!

Thanks Jules G! I am going to look through that section of the site ASAP. I think it will help to have the sources right there for the doctor to see. :)