I am pretty sure I knew this but it still surprises me anyway. When I was a kid I had hay fever, sneezed until I peed my pants when I mowed the yard, got an itchy rash if I let the dishwater run down my forearms, got hives from bug killing spray, and got a little itchy from hugging dogs. That was it and the dog thing didn't even start until I was in puberty. Before that I could cuddle the family dog just fine. Over the years I noticed I was getting more sensitive to things. The itching from dogs got a little worse, I couldn't mow the lawn anymore, my hay fever became unreal, and dust starting bothering me. I developed mild asthma. I was used to taking antihistamines during allergy season and having to blow my nose often when going through hand-me-downs.
It all stayed at a manageable level. I didn't need to take allergy meds often. I only needed my inhaler once or twice a year. I made sure to not pet dogs, wash my hands often, and not touch my face. I didn't notice at first, but it was gradually worsening. It was happening over the same time period that my personality was changing, that my fatigue was worsening, and that my dysautonomia was taking a downturn. It is all connected but I am not sure how. I started getting hives for, what seemed like, no reason. Dust was making me need my inhaler. I had to go bug the docs for a new script. Scratches and pressure from my clothes left itchy red marks. My entire body itched all the time, especially my scalp. I though I had scalp psoriasis, at least that is what a dermatologist told me. The hives were bigger, redder, and way itchier. I figured it was time for a check up with the allergist.
The last appointment with an allergist yielded a huge skin prick test that tested for everything seasonal. Everything came back positive. All the kinds of trees, all the kinds of grasses, all the animals they test for, dust, dust mites, mildew, mold, cockroaches and their poop, and a few other things I forgot. I was told to take an OTC antihistamine if I had a problem. So I already knew I had allergy problems but they weren't severe. I got tired of being itchy though.
This time I knew I had HEDS and FMS. I knew going in that MCAS was common with HEDS. I specifically asked for a doctor who knew about all 3 conditions. I wasn't disappointed. He was very knowledgeable about all of it. He checked me over, reviewed my previous hormone and tryptase level checks, and asked the right questions. He said I have "sensitive skin". I was confused for a minute. It didn't sound like a medical term. Then he said that I have urticaria, dermatographism, allergy induced asthma, and eczema. Apparently I don't have scalp psoriasis. The allergies make my head itch, scratching my head gave me hives, my HEDS made it easy to cut myself while scratching, the wounds wouldn't heal, bacteria got in there, and made a huge incurable circle.
I was told to take 180 mg of allegra twice a day, use my inhaler more frequently even if it just seems like it's not too bad, and if my hives or symptoms ever get so bad I need to go to the hospital, I am to give them the paper requesting a tryptase level.
That last part told me that he suspects Mast Cell Activation Syndrome. This is different from Mast Cell Activation Disorder. MCAD is where you have a larger than normal amount of mast cells and they are pump out histamine and other stuff at a moments notice or continuously. MCAS is the same thing only with a normal amount of mast cells and they might be less zealous about overreacting. Was I diagnosed with this? No. That's why the doctor asked for a tryptase level if my symptoms become way worse. http://www.ncbi.nlm.nih.gov/pubmed/23179866
As for my scalp, the antihistamines should reduce the itching and the hives. Then all I need is to let the skin heal. My scalp is a hundred times better already and I have only been taking them for a week. It is amazing. I thought my scalp would never get better. It is an amazing thing.
I still get hives from bug bites, but I don't get them from cuddling my cat anymore. I can cuddle and pet my dog. I can have all my windows open no matter what is blooming, pollinating, or whatever outside. My fibro pain is less and I feel more like myself. I am loving this change I am seeing in myself.
I have one more specialist planned, a rheumatologist. I plan to ask about my knees and stuff. I would like to be able to do stairs ad hiking hills without pain or fear of strains and sprains.