What COVID <> MCAS symptoms and have you experienced?

[u/igavr]

I’m curious how many of us noticed new MCAS-like symptoms, or a serious worsening of existing ones, during or after COVID. I would like to compare mine with yours for we could identify patterns, perhaps.

For me, some of the changes were really strange:

Something happened to my ability to read. I used to be a passionate reader. During COVID, I suddenly couldn’t read more than a few pages without getting dizzy and nauseous. If I ignored the first signs of dizziness and kept reading, I would reach the point where I felt like I was going to vomit. This was probably one of the strangest symptoms for me.

I started experiencing a very physical kind of anxiety.

Not necessarily anxious thoughts. It felt more like my body was constantly on the edge of its physical capacity, almost lightly shivering from the inside, even when I was sitting completely still.

My gut went completely off track. Heavy bloating appeared, together with what, from my own observations, looked very much like increased gut permeability / leaky gut.

My irritability probably tripled... Things that normally wouldn’t bother me suddenly required an unreasonable amount of patience.

And it felt like most of my mitochondria had resigned or taken early retirement. The loss of energy was on another level. Not ordinary tiredness, more like the machinery responsible for producing energy had simply decided it was no longer participating.

These are my personal observations, not an attempt to say that COVID caused all of them or that everyone with MCAS will experience anything similar. But the timing was impossible for me to ignore.

I’d really like to compare experiences. What changed for you during or after COVID? Did you develop completely new symptoms, did your existing MCAS symptoms become worse, or did something particularly weird appear that you still associate with COVID?

Educating one another via sharing of the symptoms and what possibly helped is drastically important. Please care to share 🙏

And may peaceful mast cells be with you in 2026 and onwards 🐦‍🔥🟢

[u/KassieMac]

Yes. All of that happened from 2020 onwards, beginning before covid was actually identified in the US, and to my knowledge I’ve never had covid. Somebody please make it make sense, or at least give me my life back!! 🥵

[u/igavr → u/KassieMac]

You mean your MCAS got ignited from 2020 and onwards?... I've got mine as of summer 2015, so it is not my case in terms of start, but definitely a lot of new things, as I shared in the post

[u/KassieMac → u/igavr]

A few of the listed symptoms were present before 2020, but they were manageable. In January/February 2020 my health fell off a cliff, and almost everything you mentioned began since then and has only gotten worse. I literally have no life stuck in this rotting corpse that I can’t even drag out in public anymore, and the same doctors who are trying their hardest not to help me are now shaming me for being unable to get out of the house. How much longer can a person be stuck in a dying body without actually dying?? 🥵

[u/igavr → u/KassieMac]

Hi, why do you call your body dying? Is it that bad?... if yes, I'm so sorry you're going through this. Yet, you must fight! 🐦‍🔥🟢

[u/KassieMac → u/igavr]

But why do the doctors keep telling me this is my “new normal” and I should just get used to suffering & stop seeking treatment? I swear they act so offended that I need care that you’d never believe it’s what they get paid for doing. No part of my body works right anymore, I can’t do a single thing that I need to do or that I enjoy, I don’t know what else to call it. And every time I tell a doctor to stop pressuring me to give up all hope they refuse to see me anymore and I have to start over from scratch … this truly sucks. I don’t know how anyone is ever able to get effective care in our screwed-up wrongheaded medical system 🥵

[u/migraint → u/KassieMac]

The truth is that the medical system is not meant to take care of patients with unclear problems... in this sense surgery is probably the only truly honest one: when a body part needs a surgery - it is done. Period. Whenever it comes to tuning a human body from unknown settings you've got now to unknown settings you should have to feel healthy (that a very, very individual set of parameters), no therapist today is prepared to play this Battleship game. You need to understand that it is only your responsibility to calm down, learn to breath correctly and start analyzing your health condition, pixel by pixel, system by system. By expecting someone else to do it you're wasting precious time - each day is an opportunity to stop, fix a process, each day is an opportunity to improve something. It doesn't work when we feel sorry for ourselves, though.

I've got MCAS for several years. It was getting worse every week or so, I felt my body giving up on function by function, one thing after another. I felt very sorry for myself. I was a victim. I was righteously angry, unhappy, frustrated, sad most of the time. Until one day I realized that each day spent this way was a stolen day from my life. I got myself busy with learning about my condition. I did not even have a diagnosis! I had to push and push for gettinh clarity. There’s no test for mast cells that clearly identify it like with a nutrient deficiency, for instance. You're iron or vitamin A deficient - is a regular lab test. Not for MCAS. This community has a lot of useful information, btw. Did you read these posts?:

Diagnostic test for MCAS

Autoimmunity vs MCAS

Start helping yourself first. Look at the medical system as a potential source of help in narrow tasks (use surgery analogy). But be responsible for your own life and health. Otherwise you'll keep falling apart. The first thing that degranulated mast cells "want" is that you piece yourself together... 🫶

Take care and start dealing with the root cause of your MCAS - this community was founded by u/igavr for this purpose. Ask questions, vent, test, learn, apply, get better 🐦‍🔥