It is, in general, a poorly understood disease (as lots of others in the thread are pointing out). And everybody's case is different.
I will point out that I've never gotten so much unsolicited low-quality advice before, though; people who barely know me will make a very confident diagnosis on-the-spot once they hear I've got a long-term illness. E.g., “you're vitamin D deficient” (no, I'm not, and anyways, I've been taking vitamin D supplements for three months just in case, with no effect). I'm sure they mean well, but it becomes tiring really fast when everyone does it. (There's a select few people who seem to be much more careful about throwing our random crap like that, including, unsurprisingly, all the doctors I know.)
I will point out that I've never gotten so much unsolicited low-quality advice before, though; people who barely know me will make a very confident diagnosis on-the-spot once they hear I've got a long-term illness. E.g., “you're vitamin D deficient” (no, I'm not, and anyways, I've been taking vitamin D supplements for three months just in case, with no effect). I'm sure they mean well, but it becomes tiring really fast when everyone does it. (There's a select few people who seem to be much more careful about throwing our random crap like that, including, unsurprisingly, all the doctors I know.)