Coping With Mast Cell Activation Syndrome 💪

Living with Mast Cell Activation Syndrome (MCAS) can be an isolating experience. Friends and family are unable to understand the condition deeply.

Patients can no longer participate in the same activities and eat the same foods they enjoy.

If you know someone with MCAS, don’t forget to check up on them.

Watch the full video to learn more.

#podcast #mastcellactivationsyndrome #health

[NoNameToYou]

And this is assuming you can even get correctly diagnosed. Thank you for sharing.

[quakeu]

This is all so true. Being labeled as nutz is one of the worst parts.

[RilsssART]

It is so hard when my parents don’t understand mcas and I was born with it. They don’t seem to realize how it affects me in sports and when I’m stressed about my grades or a project. I cry and break down so easily and mcas doesn’t help.

[joannadavis]

I am 80 years old and have MCAS. It is terrible, I cope by talking with my therapist, eating a good diet, knowing what my limitations are. I went from being vital, highly functional with lots of energy for jewelry making, cooking, canning, growing a garden to having to adjust my lifestyle, living in the moment. Learning to give myself permission to rest more. One has to have a positive state of mind or you cannot cope. Do I hate having MCAS, yes I do, but I am grateful for every day and hope for treatment one day that works. In the mean time, I live and love everyday to the fullest. My husband and my dog pack agree, LOL! 😀

[Me-hfii]

We need more streams of society that people can fit into and thrive in. There’s this one big stream only - and anyone that doesn’t fit into it is called sick or lazy or useless (or the social programming is such that that’s how they feel even if no one actually says that).

I strongly believe that many people who have these conditions have such serious issues with them due to the stress of trying to fit into a world they CAN’T fit into.

[jac]

mold is also a trigger, a scent, Mcas

[pearlnova]

I was diagnosed in 2005 with Systemic Mastocytosis.
Bone marrow biopsy and Tryptase serum level of 32.
Now in 2024 I literally can’t go outdoors on a very warm/hot days my #1 trigger is too warm of a small Doctors office, my car is cooling inside before I get in to drive on a hot day. Early mornings work for a quick trip to the grocery store.
I am 63 and my bone pain and tension headaches are intolerable most days. OTC doesn’t help/work for me.
I will take a few Tylenol maybe 2x a week. I have been using n Ibuprofen and Acetaminophen for years and I want to help my liver to not fail. 25 years of OTC is a long time.
People do tend to not really listen or they get bored quickly if I mention I am having a flare or my flushing starts with face and travels all over my body. Sure Benadryl helps if I carry it with me. My own family acts like I’m a burden.
It’s nice when someone I know says have a good day and they look at me when they say it.

[TammiHughes-ow]

Its sad when you first start having symptoms. YOUR WHOLE CHANGES

[primrosedahlia]

The worst part is when family dont try to understand. When they want you to eat meals they have prepared because they dont have anything that you can it. They think that they can compare it to someone trying to loose weight, so "well does it hurt if you just eat a tiny piece of this cake? Can you please do that for me?". My mother literally said that to me at age 70. People think we are just being difficult. They dont understand that food make us sick

[billieruth]

IT’s increased constant thoughts of suicide in me after all the trauma of severe pain five years, abdonment but gaslighting me… last 15 years of my life : chronic Lyme, EBV, got CoVid brain infection, growth on my pituitary that causes constant epinephrine flooding, burning burning pain everywhere all nerves bladder, organs encephalitis, now I’m to scared of Drs, exempt from vaccines, so Drs turned me away .. few were patient no one held my hand 🙏

[jackeygibney]

I’m dead serious when I say I need to unplug your air freshener… sorry. Or can you please stay away from me if you have anything scented on you. I need to use unscented, hypoallergenic everything. I shouldn’t eat that food because it has artificial preservatives. Sorry guys I can’t stand outside in the cold (fortunately heat is oddly fine, I get a histamine and inflammatory response to the cold). Can I have a consult with the doctor over the phone for my prescription refills? Trying to explain this one is frustrating. I can’t even walk into a clinic because they have used the sanitizers and other cleaners that with flare me right up. And don’t let me get started with the Uber driver situation. One of those little trees air fresheners is the death of me. I now have a literal respirator for those situations now. No im not contagious, no I don’t have covid, I can’t breath in your vehicle. I drive but on days the car is in the shop. Ugh. I have normal seasonal allergies yea but this new crap came after I had Covid I 2020. I step into shoppers to get something I feel like I’m going to pass out. And that’s not me being dramatic. 😢

[Pamelamusic]

My symptoms are escalating, my tongue swells every other night, Claritin and Benadryl I’m just overwhelmed and scared.

[leannshort]

I feel like I’m dying most of the time. I have a constant chronic, very productive cough and wheezing that never goes away. The stress on my body just from coughing all the damn time is enough to send someone over the edge… I can’t do anything I was able to do before. This is so debilitating!! I need some relief but can’t be on Prednisone all the damn time!

[alexwelts]

Is this when all your cells become conscious and self aware?

[MrLoserpatrol]

What's your craziest symptom? Anybody ever had hair follicle pain? I felt like I had scalped myself walking under a low door frame and it hurt for about three days. I didn't know it was a symptom until I was reading the seemingly endless list of symptoms sometime after it happened. I was like hey, I remember that.

[autumnpendergast]

Gee whizz talk about leaning into being a victim. It's not that bad!!!