I saw my PT today, who has been helping manage my #EDS and #LongCovid and #POTS. We discussed how the gradual exercise routine we had been pursuing as part of the emerging POTS protocol might not be a good fit for me, given my @mecfs -like symptoms.
She said she thought it was only a tiny fraction of LC patients who ended up with CFS-like symptoms and PEMS; which didn't jive with what I've read. But she's reaching out to covid specialist colleagues & researching more about it for me.
I do feel immensely grateful that we're transitioning from acute intervention for #hypermobility injuries and strength training, to maintenance.
Now that I'm not constantly subluxating critical joints, we're shifting our focus to managing physical endurance and fatigue flares after "normal" levels of activity.
HUGE difference in upright endurance and how symptomatic I become since starting midodrine and beta blockers. It's making gym training a lot easier!
@pandemoniumcrutch wow, this sounds amazing. I've never seen PT treatment transition like that. I have hypermobility issues with partial patellar subluxation.
Do you have any advice for finding a PT who is willing and qualified to treat via any strategies other than strengthening?
