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Saillea

713d

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?

Top reply
    • psw

      486d

      @Saillea I get what I call power surges. My normal temp is 97. My upper half of body can be 100 while my lower half is 97. ( use a non contact thermometer) the overheating lasts a few minutes then stops. I've tried many different remedies including hormone. For years my drs said you are female, it's hot flashes. It's not. I've had it since age 5.

    • psw

      584d

      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...

    • Wondercell

      701d

      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.

      • Saillea

        700d

        @Wondercell 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.

        • psw

          486d

          @Saillea I get what I call power surges. My normal temp is 97. My upper half of body can be 100 while my lower half is 97. ( use a non contact thermometer) the overheating lasts a few minutes then stops. I've tried many different remedies including hormone. For years my drs said you are female, it's hot flashes. It's not. I've had it since age 5.

        • MeeB333

          583d

          @Saillea - Try calling drug manufacturers. If you call them directly, they can usually give you more information. It’s not foolproof, so I still keep an epi-pen nearby whenever I have to try a new medication, but manufacturers definitely have more information about their products than pharmacists, &, if you call to inquire directly, they will give you the most current & thorough information because they probably don’t want to be liable for adverse reactions. (You can ask pharmacists for the manufacturers’ contact info, or just look up online. Also, TO EVERYONE: Make sure that your pharmacist marks in your file that you must have the same manufacturer each time you refill a prescription, & always double- check because they sometimes substitute or switch manufacturer brands, & this could be a potentially fatal swap for people like us!!!) Good luck!!! ❤️

    • Saillea

      709d

      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.

    • Medicanomaly

      710d

      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.

      • Saillea

        710d

        @Medicanomaly 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.

        • Medicanomaly

          709d

          @Saillea oh my, I’m so sorry you’re having such a hard time. I had to go on disability at 23, because of fibro, chronic pain, major depressive disorder, ptsd, and numerous suicide attempts.. it took me a while, but now, 16 years later, with a team of empathetic doctors, I can work relatively normal hours, though it seems I average about 3 days a month.. where I have to call in either sick, have some kinda flare, reaction, infection, (whatever 🙄)… I think the doctors see these diagnoses and think they know it all… and dismiss anything that doesn’t fit the medical model majority. So they point fingers, and make us feel inadequate. I started recording all doctor visits on my voice memos because of the disrespect, and judgement I received. I couldn’t wrap my head around it. There absolutely is hope. I think we have to slow down and tune into our bodies, and give them what we need… which is difficult in life’s hustles and bustles. I started looking into gut microbiome recently. I’m trying to rebuilt mine currently. It’s starting to help.. I suggest looking deeply into nutrition.. (I hate that I just said that) but it’s proven to be most helpful in my journey. More helpful than any of the run around from most of the doctors anyway..

      • MeeB333

        710d

        @Medicanomaly - 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

        • Saillea

          710d

          @MeeB333 Thank you! Good luck to you too! I really appreciate the shares.

        • Medicanomaly

          710d

          @MeeB333 THIS!! Yes!!! Great advice. It’s definitely an entire lifestyle change.. preparing for unexpected reactions, taking twice as long grocery shopping, because even the products you use every day, can be formulated differently at any point without any warning.. and medications!! I’m super reactive to trace amounts of gluten in meds.. and the pharma companies don’t need to disclose this information on their inactive ingredients list. So that’s another thing that may need attention. And stress. 🙄. Like that’s avoidable. I forgot to mention, once I got an air purifier, a lot of those snotty symptoms calmed down for me, a lot!! My place definitely has a mold issue, and I chalk that up to some of the similar symptoms too! Best I’ve been able to come up with is clean air, clean water, clean food. And as few products as possible. I use soap on my body like twice a week. And just take water showers. (May be weird) but I use summers eve as face wash… the only thing that doesn’t make my skin raw. Very few lotions work for me with the aloe and vit E sensitivity, so sunblock is out too.. It’s a huge adjustment, but for the most part, manageable, (although super tedious and frustrating at times). Hoping everyone finds some relief!

    • DysUnicorn

      712d

      Food sensitivities, nausea, and abdominal pain

      • Saillea

        712d

        @DysUnicorn 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.

        • DysUnicorn

          712d

          @Saillea I have reactions with most foods. I still don’t know if it’s salicylate, oxalate, histamine….

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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