Hi all. I was just diagnosed with EM by my rheumatologist. She basically made the diagnosis on history and pictures of my hands alone, I think because my symptom pattern is so perfectly typical in some ways. My fingers, knuckles & palms turn red, swell, and feel like an instant sunburn (only a million times worse) in response to exercise or heat exposure. She sent off some labs, and we are going to chat some more later today & try our first pass at a plan.
My impression from reading is that a typical treatment plan is:
rule out underlying disorders,
throw medications at it semi-randomly and hope something sticks.
Although I may end up being wrong, considering the quick diagnosis, I'm guessing my rheumatologist tends toward the "throw things at it" side of the spectrum, rather than the "rule out everything else" side. I'm basically fine with that, since I see that often one has to throw *a lot* of things before finding the right combo, so I'm happy to have someone who will be willing to do that.
But I also have a bunch of other vague, nonspecific symptoms (belly pain, headaches, muscle aches, and horrible, blinding fatigue; they all often seem to follow the same pattern as my hand pain). That suggests an underlying disorder to me, so I'd like to also have someone else on my team who is more on the "diagnose everything" side.
I'm thinking a neurologist is probably my best bet? I live fairly near Boston and I see that MGH (Mass General) has a "painful neuropathies" clinic and that some of their docs do research in possibly overlapping areas (CRPS, SFPN). Has anyone dealt with the MGH neurology department? Have other referral ideas in the Boston area?
And I have a couple questions about symptom pattern too. When I am in the heat, the redness and pain in my fingers and palms are pretty uniform, but when I exercise, the redness is patchy/blotchy interspersed with white areas (like a mixed Raynaud's, only it's not cold out). On the backs of my hands the redness from exercise is mostly at the knuckles and below the nails, and the inbetween-areas are white. On the palms the blotchiness seems random.
And then afterwords, the redness and swelling go down pretty quick except at the joints (maybe twenty minutes or so), but the pain actually gets worse over the next 6-24 hours and I get little bumps on my finger joints (welts, maybe?). Then everything slowly subsides over 1-3 days.
Am I right that this is not typical of pure EM and maybe suggests something else going on? Does anyone else have this or a similar symptom pattern?
Wow- post soooo long- sorry about that!
Anyways, I'm psyched to have found this great resource, and am looking forward to (virtually) meeting you all. Thank!