Update: I was off the internet from fall 2019 till May 2022 due to inability to hold head straight and couldn't read small text like on a cell phone. My dad was going online for me to research and typing for me. I also stopped feeding myself during that time, but that was probably due to wearing to many sweaters which was using up my energy due to muscle loss.
Since then I have made steady progress and experienced improvements I never thought possible. For the past 3 months I have been able to go for walks and stand for even 45 min. For the past 12 years I couldn't stand or walk for more than 10 seconds before losing all my energy and needing to lie in bed for hours or days still I recharge to baseline. I was dependent on my parents for everything. I've been able to wash dishes, rake the leaves, vacuuming, cleaning, things I have not been able to do in 12 years.
This improvement is likely due to 3 things: I started sertraline in Nov 2022, after which I felt more energy. I didn't notice any change in my mood though. Then massage helped me hold my head straight for first time in 4 years in July 2023 and took away some soreness in my thighs. The past year I have been learning limbic retraining and the past 3 months doing Pain Reprocessing Therapy (a type of limbic retraining program that can also be applied for fatigue).
I'm still dealing with many other symptoms, like dim vision, pulsing in head, heavy head and still need to lie down during the day to rest. Also joints feel looser than normal, still not doing all activities myself. But so grateful for the improvements. I hope they are permanent!
I'm also not sure with absolute certainty what gave me the main energy boost but I don't care as long as I am feeling better.
Wishing you all improvements in health and a full recovery.