So (as you may already know if you just read my last post :P ) I've been officially diagnosed!
My doc (rheumatologist) ran a number of tests to look for a secondary cause, but everything came back negative. So it seems that I've got primary, idiopathic (no known cause) EM.
It's strange - no one else in my entire (extended) family has anything like this, or any really strange/rare conditions (that I'm aware of). I am seriously and truly an anomaly in my family! I seem to baffle doctors when they ask about family history and all I've got is psych/addiction and diabetes!
I have a milder form of the disease (especially relative to many of the people here). My flares are often situational, and can last for hours, but not days. It can be daily, but it's definitely intermittent. I just feel really uncomfortable when it happens. I don't want to stand, or touch anything. I just want to cool it until it goes away. Even when I hold something cold, the second I remove that, I feel the burning right away. The hands make manual work hard, and the feet make standing, or exercising, hard. I can push through it, generally, but eventually, if it's been a few hours, I just want to cry. Moreso because I just want it to go away! And nothing I do can make that happen - only time. That depresses me the most, I think. Just that, there really isn't anything I can do. I can't control when it happens (it does, sometimes, happen when I'm cold too), and I Can't do anything to stop it. I feel like it's gotten worse over the last year, but certainly not to a disabling, but I can't help but worry that it'll continue to get worse as I age.
[On a side note - did anyone have trouble with pregnancy? That's a HUGE concern for me. I'm 25, and next year, when I'm done with school, we want to start trying to get pregnant. But in the back of my mind, I'm freaking out that it's going to be horrible. The symptoms will become worse. Or even that, after I'm done, things get permanently worse. As in "if i hadn't gotten pregnant, this wouldn't have happened" kind of thing. I know a girl who developed sarcoidosis after she had kids. I'm sure it would have happened anyways, but that association of "it started once I had kids" is still stuck in my mind. Obviously, I can't predict that. And I shouldn't (and won't) base my choices on that. But I'm curious about what happened with others...]
Ok, back the the main topic!! My doctor put me on Gabapentin. I'm to start at 100mg at night, and over the next few weeks slowly work my way up to 100mg 3x/day. What I'm wondering is, for those who take this, what does it feel like? From what I understand, you still feel the burning - is that right? But the pain is less? I'm having a hard time figuring this out, since, to me, the pain is directly related to the burning - like the burning is one of the more painful things for me. So how could I feel the burning but less pain? Does that make sense? I hate the swelling, I hate that it's almost impossible to find shoes b/c I need them to "accommodate" my feet during swelling, but aren't too big when I'm "normal". I hate the way my skin feels. But I hate the burning most of all. That, to me, = pain. So what could I maybe expect to feel when I'm taking Gabapentin?