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Saillea

Updated 1y ago

Struggling with Mast Cell Activation Syndrome

Hi. I've only recently been diagnosed with mast cell activation syndrome and I'm wondering what everyone struggles with most. I get random fevers and, of course, anaphylaxis. The meds help with the anaphylaxis but I can't get the fevers to stop happening. Anyone else struggling with this?

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DysUnicorn

2y

Food sensitivities, nausea, and abdominal pain
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Saillea

2y

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.
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Medicanomaly

2y

It took me years to be able to judge my body enough to come up with answers as far as what triggers it. Annoyingly, I had to write down every product, food, drink, activity, etc… the times that I had a reaction I had to cross check all of the lists to see what similarities there were, and then zone in at that point. Regarding food, I can’t have any water that isn’t purified.. which includes that water found in all beverages, dressings, sauces, ice, etc. also major triggers for me are high fructose corn syrup and gluten, added synthetic vitamins. BUT THEN, there’s always the fun “allergic to moving” feeling. Where if I move around too much, or wear anything with raised seams, rough material, or get too hot….. hives all over. Being allergic to things your not actually allergic to, is super confusing. Especially when it’s something like soap, aloe, vitamin E.. 😑 I remind myself that my immune system is too busy doing some kinda LARP games. And it needs me to micro manage. Hope some of this might help.
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MeeB333

2y

- 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
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Saillea

2y

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.
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Saillea

2y

Thank you hon. You don't know how much it means to me to hear that. We seem to have a lot of medical issues that are alike so I definitely feel ya'. I went to a nutritionist several months ago and her words, verbatim, were "I just don't know what to say about this. If we follow all the dietary recommendations from your specialists you'll starve." They want me to have no dairy, no wheat, super lean meat (I'm often anemic), no citrus or any acids, and high salt intake. That and there's a long list of veggies that make me sick too. It just feels impossible. I'm so so tired of feeling sick and tired ya' know? I really appreciate your thoughts/advise. It's just so reassuring to know there are others who get it. I mean... this stuff feels so isolating.
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Wondercell

2y

I don't get fevers but I get terrible hot flashes and my body heats up I have to keep the house cool and stay cool all the time otherwise it can get out of control but I want to let you know for me I've noticed when I eat the wrong Foods things that are high in histamine and salicylates I have terrible reactions for days after.
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Saillea

2y

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.
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psw

2y

I get severe hives all over, feelings of extremely too hot from waist up while ice cold waist down, food gets stuck in my esophagus, diarrhea, eye pain with blurred vision, aseptic meningitis, bone/joint pain. The list goes on...

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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