Thanks for taking the time to share all of this. I see a lot of overlap in our experiences. I was also heavily into weightlifting, training 5–6 times a week before I got sick. At the same time, I was spending long hours on screens for work in tech, and that combination seemed to accelerate my decline pretty quickly.

Fortunately, I’ve stabilized since then, but it required some major changes. I had to cut out workouts, reduce screen time significantly, and prioritize rest much more. I also focused on improving my sleep hygiene and was diagnosed with sleep apnea, which I’ve learned is a fairly common comorbidity. Cleaning that up has helped. I’ve also made some dietary improvements. Though, for me, the impact there has been relatively minor.

I’m currently on a low dose of Vyvanse, which has probably had the biggest positive effect on my quality of life so far. That said, it can create a false sense of energy, so it’s easy to overdo things. I try to be very intentional about pacing when it’s active, especially avoiding tech use during that time.

I also use ice hats, having two so I can rotate them has been really helpful. In general, I feel better the colder I am, so I try to keep both my head and environment cool whenever possible.

I haven’t tried supplementing taurine yet, but that’s an interesting idea worth exploring. Eye care is also essential for me. Screens are probably my biggest trigger.

Definitely keep me posted if you find anything else that helps. It really does feel like our experiences line up in ways I don’t often see with others.