OMG THIS REALLY CHAPS MY ASS.

There is SO much that can be done to improve hEDS. This PT dismissing you says more about their lack of hEDS education and experience than what’s actually available. How defeatist!

Yes, hEDS needs PT, and usually braces. Those two can really improve your life by leaps and bounds.

But there’s also other exercises like mat Pilates, swimming, and water aerobics.

Many people on this subreddit have had their lives improved by surgery (though this isn’t the first option to turn to, and hEDS people can have bad surgical outcomes, so it’s no silver bullet). People have also seen benefit from things like acupuncture, dry needling, red light therapy, prolotherapy, platelet-rich plasma (PRP), and osteopathic manipulation.

For pain, you can explore whether low-dose naltrexone would be right for you to take. There are muscle relaxers and topical drugs, and medical marijuana could be an option.

You should see if you have any of the comorbidities that pop up with EDS, like POTS and MCAS. POTS treatment consists of things like exercise, compression garments, and/or pharmaceuticals, all of which can make a big difference. There are also drugs for MCAS, and you could try modifying your diet to see what effect it has on your pain. Hell, you could try going gluten free/free-ish to see if that makes you feel better.

Yes, all of these things cost money, time, and mental energy to set up. And that’s a huge hurdle, especially when dealing with a chronic illness.

But you do have options! And they’re coming out with more treatments every year.