Sorry for the length of this post, but this is my first post and want to provide a good history of my problem. Does anyone recognize this condition or have any insights? I'm open to any and all suggestions at this point. I'm a 31-year-old black female, 5'8", 140 lbs.
My first symptom was aphthous ulcers in the mouth. I've had these on and off, 1 or 2 at a time, since I was about 10 years old. Around age 19, I suddenly noticed the ulcers were getting worse and worse. By age 24, they'd last for weeks, usually be accompanied by thrush on my tongue. At this point, I figured I just had chronic canker sores, complicated by opportunistic candida. I switched to SLS-free toothpaste (helped) and started to take L-lysine, iron, acidophillus and B vitamins. Also tried various prescription canker sore treatments (no help).
By age 26, I was also getting occasional ulcers in my nostrils along with the mouth ulcers. Then I started to notice blisters on my palms, then my knuckles. Since then, the blistering has appeared on tall parts of my hands, my elbows and the tops of my toes. (Notice that these are all "bony" areas. Significant?) Ulcers also continue to form in my mouth and nostrils, and (very occasionally) outer vulva. During my worst attack, even my upper esophagus was involved, which was scary and painful. At some point, I managed to catch a blister in my nose, which soon broke and became an ulcer. I've also caught a few blisters in my mouth. So I think all of the ulcers might actually be starting out as blisters.
The blisters follow this pattern:
On the palm side of my hands, where the skin is thick, they usually come a few at a time, preceded by a swollen redness that feels warm to the touch. These areas hurt when touched and sometimes have a very slight deep-seated itch. Within a day, I can see/feel whitish "voids" several layers down, but the area stays essentially flat. Over the next 2-3 days, the redness and pain disappears, and they rise closer to the surface until they look like regular friction blisters filled with clear/yellow fluid. They can be anywherre from 1mm to over 10mm. Average is about 3-6mm. They usually last for about 6-14 days like this, then eventually flatten out, harden and darken to a tan color as the fluid inside "dries" into a sort of scab below the skin. I've snipped into the skin to remove these "scabs"-- they come out in one flat flexible piece, and the skin underneath seems normal. I once noticed a slight ammonia smell when I did this.
On all other areas (including backs of hands), there's no preliminary swelling, redness or warmth-- I'll just notice a new blister one day. These are always single, filled with bloody fluid, with very thin skin over the blister. They're usually bigger than the once on my palms, and much taller. Often they're so tight the skin is shiny. These tend to break very easily. Once it "dries out", looks and feels just like a regular blackish-purple scab-- except that it's under a super thin (nearly invisible) layer of skin. At this point it's an ugly stiff black thing, so I'll usually peel it off. They always peel off easily and painlessly, except at the very center, where they seem more firmly/deeply attached.
The skin that borders the blisters remains very stable; the blisters do not form, spread or enlarge if I apply pressure. The blisters themselves do not itch at all. I can provide pictures of all stages of the blistering, if that helps. They're quite strange. During a bad attack, I feel weak and incredibly exhausted (ie: taking a shower totally wears me out), with a persistent bone-level ache in my big joints (knees, shoulders, hips).
Doctor (Mis)diagnoses & Treatments:
I've gotten less-than-confident diagnoses of lichen planus, erythema multiforme, lupus erythematosus and some other things I don't remember that weren't even close. I understand why they'd be considered, but none of these diagnoses holds up. Either I have symptoms that don't fit, or they call for symptoms that I don't display. They don't even look like what I have. And none of the treatments that go with them have helped at all. I've had three very painful and expensive skin biopsies, all supposedly normal. I was recently referred to a rheumatologist because of the "bone ache" that comes with a bad attack. He ran a bunch of blood and urine tests, and came up with nothing.
If it was just my hands, I'd be sad, but I'd live with it. But the oral ulcers have all but taken over my life-- I don't know how I can go on living like this. Eating, speaking, smiling, laughing, kissing and oral sex are all nearly or completely impossible half the time. Living on scrambled eggs, pureed squash and yogurt is so demoralizing. I'm losing my mind, my husband is just about fed up and my boss is losing patience! Please help!!!