Many of these were child and adolescent symptoms, things we didn’t realise were even caused by allergies
Itchy and runny ears. They're actually an allergy symptom. For two or three years before learning about MCAS, I had extremely itchy and runny ears that doctors kept calling ear infections, but every time they did a swab to test it, there was no infection.
I had hay fever once, one single year growing up.
One time I was planting bulbs with my parents and my dad and I got hives, but not my mom. I get EDS from my dad.
I went swimming in a lake once and was fine then the next day went swimming in it again and had a rash on literally every inch of my body. Not even a bug bite, and everyone else was fine.
Sweating for no good reason, and some clothing material might make your sweat REEK when it’s usually under control with deodorant.
Getting itchy/rashes where you sweated.
A rough, tacky feeling on your lips. Easily distinguished from chapped lips, you know it if you’ve experienced it.
Changes in voice throughout the day, hoarser/rougher for no identifiable reason.
Worsening asthma for no reason, and getting told by your asthma doctor that it’s not getting worse, that it’s totally under control.
Permanently runny/stuffy nose. My entire life.
And an occasionally phlegmy throat for no identifiable reason.
Dermatographia.
Sometimes randomly having an asymmetrical face—swelling.
A tickle in your throat that won’t go away at all when you cough—also swelling.
Extremely painfully aching bones with no other medical reason why—swelling, but this time it’s bone marrow.
Dry heaving/vomiting not caused by food.
Certain things (usually food) suddenly smelling or tasting very wrong and not wanting to be anywhere near them. This signifies an allergy that your body is trying to warn you about.
Fatigue hitting you like a brick wall out of nowhere.
Sunlight making it feel like there is literal fire on your skin. Not sunburns. These can happen in just a few seconds/minutes.
Getting fluorescent patches when exposed to cold/rain. You usually think it’s a normal amount of reddening, but when you compare it to other people, you realise they’re red and you’re neon red.
Reacting to specific colours of candy.
I was fortunate enough not to have this one, but severe acne.
Some materials feeling really itchy to me but not to other people, even though I wouldn’t get a rash.
Rubbing my eyes way more than most people.
Snorting/snoring for a few hours/night when that’s not normal for you—throat swelling.
Sometimes my tongue would swell slightly, and I only noticed because the sides got cut a bit by my teeth. Like when you bit your cheek, but it was my tongue, and it was swollen.
Lotion drying out your skin.
“POTS” attacks when sitting or lying down—allergies do, in fact, affect the cardiovascular system.
Flushing not when embarrassed. Just randomly getting an extremely red—almost purple—very hot face, usually with a burning sensation.
Getting unusually dry skin after showering, doing dishes, washing hands, etc.
Your throat not allowing you to swallow, but only with specific foods and when you don’t have another medical explanation.
I’d get really itchy after taking any NSAIDS or opiates (super common MCAS problem drugs).
Extremely severe but also very brief GI symptoms including pain, nausea, vomiting, and diarrhoea. I once had this so severe that the puking caused three hernias, but all of the non-pain symptoms were gone within two hours. You WILL know if it’s not the flu. You may not know what it is, but you will know what it isn’t.
Getting unpredictable and random fevers without any infection.
This article at TMS For a Cure (with 16 cited research papers) includes the following symptoms:skin lesions, weight loss, enlarged lymph nodes (lol that one explains a lot about my week), issues with clotting/bleeding, body aches, cognitive dysfunction, GERD/reflux, osteosclerosis, osteopenia, osteoporosis, fainting, chest pain, blood pressure instability, and uterine cramps/bleeding.
At the end of the day, the MCAS experience is effectively defined by unpredictability. For most of us, it takes ages to figure out what we’re reacting to, how often we will react to it, and even if it’s all forms of that item (ie coconut or just coconut milk).
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