I have been reading here off and on for a month or so, trying to figure out if what is going on with my body might be EM.
Background: In the summer of 2012 I was sick with a long list of symptoms that would come and go. They were debilitating and after months of tests and doctor visits, I was finally diagnosed with chronic complicated migraine. I have struggled with "migraine" symptoms since then, sometimes having periods that are much worse. My migraines, however, don't fit any typical migraine stages and some of my symptoms don't particularly seem to fit either.
Summer of 2013 I had a bout of a month of being pretty miserable, but then improved again.
This summer, along with my regular "migraine" symptoms (a list of about 40), I developed a new symptom: Periodic swelling veins. I'm not sure that I have EM, but after doing tons of searching, it's the only thing I can find that explains why my veins swell out/bulge and are painful at night, every night, and are worse when I'm exposed to heat. I have had red/hot feet on a few occasions, as well as a few week stint of painful flushing of the face off and on, but don't have redness or swelling of extremities as a primary symptom.
I'm hoping that some of you may be able to help shed some light on if I'm going down the wrong track with thinking this might be EM. Also, I have yet to find a doctor here who really knows anything about it when I mention it to them.
Start of vein issue that I suspect might be EM: At the beginning of the summer I noticed that at night (and sometimes when I first woke up in the AM), the veins on my legs would suddenly start protruding. Sometimes my hands were mottled, like there was too much blood in them. It came and went, seemingly randomly, for a month or so.
I had two occasions during which my left foot would turn a dark red/purple color off and on for a day or two.
Then one night in June, the veins in my right shin developed a bruise (I didn't hit it on anything) and were all protruding and burning. My primary didn't think much of it. It started happening EVERY night. Then it started happening in both shins, with burning/stabbing pains. Over a matter of weeks It spread to my hands, then one forearm, then my neck, the other forearm. It started happening off and on throughout the day, but was constant and worse every night. Being in the heat seems to make it worse.
The only relief for my feet, legs and hands is elevating them. During the day I get purple spots on my knees, one of my feet, and a purple lacy pattern on my forearms.
I have a lot of other symptoms, some of which seem to also be some sort of vascular dysregulation. It really feels like I've got surges of blood happening all over my body sometimes. I have the stabbing pains with what feels like blood vessel swelling all over my body - including in my eyes. Accompanying it sometimes is a tremor. I've been to see specialist after specialist this summer, with more pending.
I'm desperate for relief and a diagnosis.
If anyone can shed any light on this based on their knowledge and experience - does this sound at all like EM(?) I'd be very grateful.