hello all.
this all started when i noticed my skin doing weird things a year and a half ago. i now know it's called skin writing (dermatographia). what's odd is i have 3 types of skin oddness occurring. if anything touches my skin, a line/shape goes racing all over. that's the usual thing people think of when you say dermatographia. i also have times where nothing is touching my skin and i either feel a tingling or like a scalding hot finger dragging down my skin. those marks don't fade for days. the third type is what really scares me. it feels like someone is carving shapes into my skin with a knife, outlining it over and over again. it creates raised shapes. they aren't from anything touching me, they happen spontaneously and are extremely painful. i have them all over and the shapes so far have been there months. they keep getting more pronounced.
last summer new things started happening. some are not scary, like one eye feels like someone scraped sandpaper over it while the other won't stop tearing, i have sniffles, mild headaches. the flushing was a bit more alarming, different parts of my skin going extremely hot and turning an angry red. the numb lips, swollen throat, raspy voice, brain fog and chest pain scare me as much as the deep carving skin marks.
it seemed like every week a different food caused me all sorts of agony, setting off the patten and i kept cutting out foods. i realised salicylates and sulphates were a no no, as well as additives and heat..which is horrid as it's summer 8 months a year where i live. when my fingers, toes, lips and cheeks started feeling like there was an arctic wind blowing on them, i consulted dr google. i tried an allergist, but it was a bust. he told me because im not in constant anaphylaxis i didn't need to worry...and that mcas isn't real anyway. so i went to my primary care doctor. she's a star. she ran the tests an allergist would order to test for mcas and hey, they kept coming back positive. i've since gone to 3 other doctors. one looked at my lung scan and pronounced me healthy from that (disregarding the mcas positive testing. she didn't even look at it!🙄), one asked me what it was, and the most recent said it wasn't his speciality. on his website, it says it is. he apologised and gave me a list of doctors to consult.
i'm eating around 2-300 calories a day, i'm exhausted, in pain (in hell rather) and on really bad days the world seems to tilt when i stand, my heart pounds, my face gets hot and if i can't get to a seat quickly, i'm going down anyway as my limbs go weak and just quit functioning.
i guess i'm just here to say hi and try to get some ideas of how to cope while i wait on a competent doctor to get me to the next steps. i am aware mcas and mastocytosis are not the same thing, but as they're related and there isn't an mcas support group, i thought i'd join here.
🤗
Anyone had Omeprazole cause Myositis?
