Going through something very similar. Started 6 years ago when my lips became inflamed out of nowhere. Lasted a confusing week and then was gone like it was never there. About a year later, it came back again a little bit worse and with some discharge. This pattern continued, sometimes only a few months between outbreaks, and sometimes over a year. New symptoms started coming with each outbreak. At this point I can feel it coming on and manage it with a steroid cream, but now my ears, eyes, nose, and other parts of my body have similar symptoms. The worst part is that it's incredibly painful, to the point where I have to leave work, but really doesn't look that bad, so it's hard for other people to understand what's happening.

I've been to 5 different doctors, a general internist, 2 dermatologists, an ENT, a gastroenterologist, and have gotten 5 different diagnosis. It feels pretty lonely, but I'm glad to see your story here, and that this article is shining more light on these kind of ailments.