Struggling with Mast Cell Activation Syndrome

@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.

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

@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!

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