Oh rstenr99,
I feel your desperation and empathize. You've been on my mind and I had to think about the best way to respond to your comment because it's a lot. Remember, this is 2 1/2 years of intensive work so please, use what you can and don't let all this data overwhelm you. Here is a good start to some of the things that I began 2 1/2 years ago and now, feel like the accumulation of all the hard work has paid huge dividends. It's not for the faint of heart, I will tell you that. My own desperation required that I wake the warrior in me and get down to serious work. And never quit.
The book "Heal" by Dr. Karyn Shanks, MD is a seminal work of functional medicine. She just happens to be my doctor. You can find it on Amazon. Get the book instead of the Kindle version so you can use it as a workbook. In it, she suggests getting a team together. So, I assembled a functional doctor (Dr. Shanks via Zoom), physical therapist (I had been in bed for 7 weeks and was so weak-also Zoom), massage therapist, Chinese doctor/acupuncturist, chiropractor, Internal Family System therapist, and an "energy" therapist (someone who worked with me to sense energy flow blockages-Sandy Kemp-her work is remote which is wonderful). Important was an AIP diet which Dr. Shanks calls GRIN. It is an anti-inflammatory diet. You can also find it through Paleo Mom. She outlines it pretty well online, what foods you can and cannot eat when your body is in inflammation. That was my problem with Long Covid, not the lungs. Inflammation. Dr. Shanks also is a supplement specialist and she has me on pretty massive supplements, very high-grade, that was a result of testing she ordered through Genova Diagnostics. This was key to finding out what nutrients I lacked. It's a lot but I know it has helped immensely in the healing process. Covid wiped my body out and I couldn't recupe because there were no resources in my body. Also, Physical therapy for mobility and strength got me off the couch. But I was religious with all of this because I was NOT going to have Long Covid defeat me. I stopped listening to medical professionals that said Long Covid is not yet curable. It had to be. That was the warrior within.
At some point, Dr. Shanks suggested that I would be a good candidate for meditation because of my massive brain fog. I am a professional pianist and I could not tell the difference between my right and left hands let alone SIT at the piano and try to practice even 5". It was so depressing. So, with great resistance, I started meditation "lessons" online with Cory Muscara through the Mindfulness .com app. I think you can also find his 31 day guided meditation course on YouTube, too. His podcast Practicing Human is really helpful, too. You don't have to start at the beginning-just start anywhere and he tells it like it is. Through the Mindfulness.com app, I also did Vidyamala Birch's 10-day course on pain. I just substituted the words "Long Covid" for "pain" which she prompted. I started to work with my body trauma (Read "The Body Keeps the Score" by Bessel Van Der Kolk, MD), shadow work as described by Carl Jung but most importantly, find a somatic therapist or someone who works with Internal Family Systems. That is when I turned the biggest corner. My body was holding trauma and letting my parts control my life. I was looping in my chronic illness of long covid and I had to understand I was living in secondary pain. This is all work with Cory Muscara. Once I had a regular meditation routine going, I learned Intuitive Movement from him where you just listen to the body and move it as it wants, instead of your ego structure or even cognitive mind controlling your movements. That means not necessarily repeating your yoga asanas or your PT but really waiting and intuitively listening to your Soul Voice to move if and when the body wants. You will be amazed at what you find out about your own body! I started using this intuitive movement upon waking with what I am calling Intuitive Tactile Waking. I had a tendency to have seizures off and on my whole life upon waking if I get up too fast and Long Covid made this come back. That and the Internal Vibrations. But once I started intuitively very, very slowly massaging my fingers and letting my body tell me where to go next, I began waking, kind of like coming online much more slowly and organically instead of forcing myself to grab the phone and scroll through the news and emails (I stopped all social media in 2019-way too much!) and doing brain exercises to make sure I was going to be ok that day. Once I started that intuitive waking, the vibrations stopped. I can also hear my nervous system ringing with silicone earplugs and when I had the vibrations, my nervous system would jangle like crazy. But with breath work (diaphragmatic) and this tactile waking, I stabilized my internal nervous system (if you will, this is not what the medical people call it for sure!) and can get the Bb I hear in my nervous system to be very simple and calm, not like a jangling, crazy tambourine. I thought it was tinnitus but it's my nervous system! Now, I can get up everyday and can function at an amazing level. No vibrations hallelujah! Energy. I feel so grateful that I kept at it and didn't give up. So, rstern99, good luck to you and to everybody on this page. It is terribly frustrating, daunting, seemingly hopeless but this, at least for me, gave me a life again. Try not to do that whole Boom and Bust (classical Chronic Fatigue Syndrome reaction) when you feel well. Just keep soft, with ease, love yourself, keep going, wake the warrior but don't try to be exceptional at all this because it will backfire. Someone else posted about rest. Yes, my question was always "what is the wisdom of my dis-ease?" For 2 1/2 years, it was "rest, rest. rest." Now, I am waking the body up and the senses, and the joy of this crazy roller coaster called a human life. I think of you all on this page often and will keep sending compassion to you all. Be well, you can do it.