Yep, I am in the exact same position as you. I lost at least a year of my life due to this post-viral syndrome. I am back to where I was prior to getting COVID-19, though. When I was really sick in March 2020, I thought "wow, I haven't been this sick in a long time". It really was like going back to square one. It was super scary, too, given the health problems that I have.
I have autoimmune autonomic ganglionopathy (autoimmune dysautonomia), which is believed to have caused my type 1 diabetes (autoimmune and insulin-dependent). It is also believed to have caused other endocrine problems and other neurological problems (I have another immune-mediated neurological disease affecting my peripheral nervous system). Anyways, autoimmune autonomic ganglionopathy is very rare, and I have the antibodies (about half of people do not), so I am tremendously lucky.
Anyways, I would be interested in chatting with you. If you want to do so, my email is in my profile information. I am very resourceful and I have tips.
Turned out to be an underlying autoimmune disorder (Sjogrens) and a clotting disorder “factor 5 Leiden”
The exposure triggered both from mild barely noticeable problems to I was completely disabled.
Took years to figure out it out.
When I got covid it was basically the same event again. Took months for body to calm down again.