ME/CFS

97 readers

2 users here now

A community for people with Myalgic Encephalomyelitis (ME), sometimes called Chronic Fatigue Syndrome (CFS). ME

Since Lemmy is small, this community also serves as a hub for common comorbidities of ME/CFS. Long COVID (Post COVID), POTS (Postural Orthostatic Tachycardia Syndrome), OI (orthostatic intolerance), MCAS (mast cell activation syndrome), and more!

For those who want an even more general community, check out [email protected]

Also please DM me I need to add some mods!

Rules: Instance Rules, No Ableism + No quackery or denialism. Empathy first, is a must to participate. No unsolicited advice.

founded 7 months ago

MODERATORS

[email protected]

For those with bad brain fog, what helped you? (lemmy.cafe)

submitted 2 weeks ago by [email protected] to c/[email protected]

2 comments fedilink hide all child comments

I have embarrassing brain fog due to POTS and CFS caused by EDS. The onset of POTS and CFS was insidious which contributed to me having an extremely delayed diagnosis (12 years from onset). I'm on ivabradine for POTS and my heart rate is actually normal now, which I really appreciate, but the brain fog is still causing daily embarrassments and some days I can't even form a coherent sentence or process something directly in front of me. It's genuinely driving me nuts. Salt and fluids help a little but I'm still nowhere near my former self. Even my movement is slow like I'm underwater.

top 2 comments

sorted by: hot top controversial new old

[–] [email protected] 1 points 2 days ago

There's nothing that helped me that didnt make it worse in the long run. best thing was to rest and pace and accept my current limitations and disability

[–] [email protected] 1 points 2 weeks ago

i've had some CFS-like symptoms during 2020-2021 (may have been Long Covid, i never got an official diagnosis) and it got better over 2022-2023, while disappearing completely in 2024-2025. just my personal experience.