symptoms change contastly

@monikka Forget about 'getting people' to believe.They don't have to.Just take care of YOU.Whatever you need to do.This is YOUR journey...they don't have a dog in this fight.You'll figure it out.They don't matter.(in this situation).God Bless dear.Be good to yourself,you didn't ask for this.It's NOT your failing or fault.

Absolutely! Thanks for commenting on it. Just when I think I am getting better because the dizziness goes away or the migraines go away, etc. Something else or more than one debilitating symptom comes back. It's exhausting and very hard to make plans. I don't see friends anymore, not that they are not supportive, but I can't show up. Family, some, think I'm crazy, but I am too sick and too tired to worry about that or even care. Crashes happen often and very unpredictable, so staying home is what I do except a run to the grocery store or a short walk. MCAS has really made it bad since I think I got covid again in January and have very few foods I can eat without very uncomfortable reactions. You are not alone, and I might add, you're not crazy, making it up or making too much of it. Take care

@mountainlover1

The most persistent symptom for me is perpetually feeling like I'm cooking from the inside out. Always hot, high humidity gets me depressed.

Yes, I totally cycle through symptoms, old ones reappearing, new bizarre neuro symptoms, GI and bladder symptoms come, go, and change. I've had a pretty long train of symptoms from Covid followed by long covid since 2020. The only thing that hasn't changed or reappeared is the terrible cognitive losses. I have some recovery from that as well as the severe fatigue, continous headaches and head pressure. But there's new stuff and it takes a while to figure out how to deal with that. I think the digestive issues are from MCAS.

@miraclestar
yes yes, that is exactly what I have experienced since my Covid in 2024. When I say constantly means symptoms run constanlty in cycles. And also agree with cognitive issues as well.

It's all so strange. When I go to a doctor's visit requesting help with the most challenging symptoms, they look at me as if I have 3 heads and generally respond with the anxiety /depression and stress management generic comments, no therapy except PT and/or talk therapy. If I include the more bizarre neuro symptoms (I rarely do that), then they look at me as if I've just grown 6 heads and say the umbrella term for “I don't know” which means get a neuropsych eval.
I finally asked for a medication psychiatrist because I knew a specific medication would help (with long covid) and has many well documented off-label uses, which were also appropriate for some or sometimes all of my symptoms. With the medication psychiatrist, I lucked out because she had a specific interest and training in neurological and psychiatric symptoms in people with chronic illnesses, including post infectious illness. She ended up prescribing appropriately and helping me manage most of the worst symptoms.
Unfortunately, I moved, so lost her as a doc. My first visit with a new PCP eventually led us to a mutual firing of one another. My prescriptions looked a bit like a polypharm situation to an uninformed doctor and she literally blew up at me about that then, and it never got better after that. So I went without some essential medications for a long time that had kept the long covid manageable.
Unfortunately, in my impaired state, I had to become my own patient advocate. Luckily, my next doctor was an entirely different type, and willing to create and then defend the “medically necessary” terminology that insurer requires. I hope you don't have to go through something like that.