u/Chantsy4337

The title says it all. I have MECFS and have been sick for the last 15 years. I was mild for the first few years and not even aware of what was happening to me. It went away with my first pregnancy then came back with a vengeance-worse than ever-with my third. I have slowly gotten worse and worse as time goes on and my world continues to shrink. I am now housebound, in bed every day and can only manage the basics: personal hygiene, getting meals and doing the odd small task like cleaning the counters, putting a few dishes in the dishwasher, tidying up a few items. That's it. My fatigue varies from day to day but when I am in PEM I tend to get a lot of weakness in my arms (and sometimes in my legs), brain fog, exhaustion, muscle fatigue and discomfort in my fascia which always seems present. I present with what feels like profound mitochondrial dysfunction.

I tried a program in 2024 and stayed with it for the last year and a half. I was so convinced that it was going to be my way out. I got better at pacing, managing my thoughts-especially around symptoms-was meditating for an hour a day (still do but for 40 minutes) and doing flat rest for roughly the same amount of time. Sure, it helped a little with my cognitive capacity and I feel a bit more stable than I use to but the biggest issue remains: I'm still sick. Still in bed, still getting PEM and not improving. I see SO many programs online. All promising the same and frankly it all makes my head spin and I don't know who to believe any more. So many programs seem to focus on anxiety, adrenaline responses, and symptoms that I simply don't have. I can't relate which just perpetuates that loop of "I am never going to get better."

I guess what I am wondering is, has anyone been where I am, with my symptoms and found a way out of this? Just feeling really hopeless right now and I don't know where to turn any more. Thank you for listening.