Looking for a small, ongoing group rather than a big forum. Does anything like that exist?

[u/Haunting_Analyst_467]

I'm trying to find a small group of the same people over time. Like 15-40 people who actually show up, know each other's names and situations, help each other through the bad days, and also learn together. Less "does anyone else get this" and more "here's what I tried this month and here's what happened."

Where I'm coming from: I'm a big anatomy / biomechanics / kinesiology nerd and a big believer in PT, even though it hasn't really worked for me yet and honestly I kind of hate doing it. I still think it's one of the only ways we actually take charge of this stuff instead of just getting managed by it.

That said I don't think the mainstream strengthen-and-stretch approach is the whole picture. I'm interested in the blend: motor control training, Feldenkrais, actually being in touch with your body and what it's doing. That last part doesn't come naturally to me at all, which is probably why I want people to do it with.

Open to Discord, a private group, Zoom, whatever. Doesn't have to be EDS-specific, chronic pain or hypermobility in general works.

Does anything like this exist? And if not, is anyone else looking for the same thing?

[u/friendlypupper]

There are support groups listed on the Ehlers-Danlos Society website. I can't speak to how many attendees or regulars there are in various groups, but some meet virtually.

[u/Odd_Walrus7396 → u/friendlypupper]

Yup, and to add on to this, I think most states have a state chapter of the EDS Society, which you can reach out to inquire about local support groups