COVID caused me to develop something called Mast Cell Activation Syndrome. I’ve basically become allergic to the world. I never thought I’d be writing my will this week because no medication is able to help me come out of my recent flare up - I can’t keep any food down, I go into anaphylaxis from Benadryl (of all things!) and just about any other oral pill, my liver’s throwing a fit, and I’ve got crushing depression about the state of my life. I wouldn’t wish this illness on my worst enemy.
I've just (finally) been diagnosed with MCAS and your comment about being allergic to the world is so spot on.
I keep saying it's an illness where you don't know the rules, the rules keep changing, no one has the same rules and there are no rules.
I've been blessed (/s) with getting it after infections, which led to post infection syndrome, then to chronic fatigue syndrome with the bonus MCAS on the side.
I am Bipolar and honestly, this has been so much worse in a lot of ways for me. At least I know the rules and triggers with my brain.
Just in case you wanted some hope I had pretty severe MCAS (like the anaphylactic kind) but after 3 years of working incredibly hard on my gut health and nervous system I can eat anything I want again! Today was my unhealthiest day ever, I had pizza, pastry, sweets and chocolate (and some veg in the midst of it all). Gluten and cheese have been the biggest wins to me tho. Never thought I'd get those back. Scents can still make me headachey but they no longer give me bad reactions.
That’s fantastic, I’m so happy for you! I know every patient is different so what worked for you might not work for me, but what exact steps did you take for your gut? Mine is wrecked right now and needs all the help it can get…
Not the guy you were asking, but I had similar issues a few years back. Wouldn't say I'm 100% restored, but definitely doing way better these days. Figure out your safe foods (even if they're just different kinds of broth) and stick with them no matter what. I had a handful of dishes that I would rotate through for each meal. You should be able to expand eventually. Recovery is very gradual. Try to figure out if there's anything specifically triggering in your environment and do your best to control it. For me, a big one is dryer lint of all things. It's like toxic waste to me. If you don't handle pills well, there are liquid formulations available for most anti-histamines. Barring that, sleep/rest is generally the next best thing. Oh and some anti-depressants have strong anti-histamine effects as well. I would suggest having a chat with your favorite AI about managing MCAS. They can be very helpful for stuff like that (taking all AI-generated advice with a grain of salt, of course.) Best of luck! Sorry you're going through it now, but things will get better.
I'm so sorry. If it makes you feel less alone, I'm allergic to Zyrtec. And it's the actual drug itself I'm reacting to, not one of the other tablet components.
313
u/Job_Moist 11h ago
COVID caused me to develop something called Mast Cell Activation Syndrome. I’ve basically become allergic to the world. I never thought I’d be writing my will this week because no medication is able to help me come out of my recent flare up - I can’t keep any food down, I go into anaphylaxis from Benadryl (of all things!) and just about any other oral pill, my liver’s throwing a fit, and I’ve got crushing depression about the state of my life. I wouldn’t wish this illness on my worst enemy.