Started suffering in summer of 1996, saw PCP, derms, dentists, etc. Suffered, (SUFFERED!) through three more years of college, trying all kinds of OTC and prescription meds. Tried Elimination Diets (at one time I actually ate only yams and steamed zuchini for two weeks, I lost about 15lbs, and I'm not a heavy person; possibly could make millions from a book about the zuchini/ yam diet).
I would describe the outer layer of skin on my lips while suffering as "paper-like". Get it wet and it turns soggy and peels away. Try to keep it from getting wet and it gets hard, more painful and eventually peels off anyway. As I recall, I would usually peel it off and try to keep vaseline on my lips constantly as the new skin would generate, hoping it would grow back normal - It never did.
I once wrote a 5 page Word document about my symptoms and all the treatments I had tried (some conventional/ some not so), I wish I still had it to share with you. You go a little bit crazy from suffering from this, at one point I actually put Elmers glue on my lips. You go crazy, in part, because you wonder if a.)is it something you're doing, so you become absolutely paranoid about licking or biting b.) ultimately you feel stupid about seeking professional help for it. I went almost two years before I broke down and went to a doctor at all, or even told anyone (friends, family, etc.) that I thought something was wrong. Ultil I did, I just made excuses for why I didn't always want want to go out and drink beers in college (after a night of drinking - the lips would be worse and more painful than ever.)
To make a long story short. I moved to NY after college and had actually given up completely on curing the condition. I had decided that the best thing for my sanity was to resign myself to carry around Vaseline and get on with my life. Then for some reason I decided to try one more time to cure it about 3 years ago (I think the thought occurred to me "I'm content now, but what if, because of my gross neglect of this problem, some day it gets even worse and my lips end up as a photo in a medical journal"). I seeked out the best in the field, and ended up at Johns Hopkins in the office of Dr. James Sciubba.
He prescribed Lamprene, the rest is history.
As I said, I don't think my lips are what they were before about 6 years of hell, and I still carry around a small vaseline almost everywhere. It some ways I don't even remember what my lips were like before.
But I am one hell of a lot better now, thanks to Dr. Sciubba and Lamprene.