Struggling with Mast Cell Activation Syndrome

I get hot and flushed at totally random times too. Those times aren't too concerning but my temperature is just... weird. Then again, everything about this disorder is weird! My normal temperature stays between 95°-96°f so when I hit 98° I actually have a low grade fever. But the episodes I'm more concerned with are the ones 2-3 X's a week when it reaches 99° and up. Figuring out triggers is absolutely exhausting! I have so many different medical conditions besides MCAS that I'm not sure what is MCAS related and what's not or how to fix them either way. I DO find it really helpful to do my grocery shopping on Walmart's app because every product has nutrition information and ingredient lists displayed and it lets me make a list of items I prefer so I don't have to go through the research process every time I shop. That, and I'm kinda loving having the option to let them gather it and then just picking it up...or having it delivered on days when I'm just too sick to go myself. I'm not sure how to go about researching my meds. My pharmacist keeps me informed of any potential problems that could cause a reaction but how do you figure out if one of them is a trigger without stopping them all and trying one at a time? My specialist says it's way too dangerous for me to stop any of my meds so I'm not sure how to work that out safely.

It really does help. I've been labeled an anomaly or, worse, a hypochondriac, for so long I was beginning to think it really must be in my mind. Only problem with that idea is all the visible reactions and obvious illnesses! I can't even hold down a job thanks to all the reactions. It just helps so much to know there are others out there that are managing it. It gives me hope where there's been none for so very long.

- Great comment!! Relatable & informative! :) @Saillea - In response to your original query, I just wanted to say that all of those symptoms you are describing mean that you are very likely unintentionally triggering yourself with sensitivities you are unaware of, as of yet… Yeah, it’s annoying to have to read every label of everything you touch & ingest, but I’ve got my symptoms down to a minimum because (took a couple of years, but) I’m aware of my triggers & I’ve gotten good at avoiding most things! :-) Unfortunately, tho, I live in FL, so mold is unavoidable & I still do suffer from this prob. I’m basically allergic to showering, as I’ll sneeze & snot like I have a bad head cold for 24-48 hours, if I take too long… :-/ Good luck 2 U (all), & I do hope that u are able 2 identify & avoid your triggers!! <3

I mean...I have constant nausea and occasional abdominal pain but I just thought it was regular digestive disorders. I had no idea MCAS could cause that too. That makes me wonder what other complications I have that are actually because of MCAS. Weird. Thanks for sharing.