I have a suspicion that some non-trivial amount of the non-genetic EDS folks may suffer from fluoroquinolone antibiotic toxicity.
Among the many effects of FQs is how it can cause a net-loss of collagen in the body. It increases MMPs that breakdown collagen in the body. Part of the reason FQ antibiotics have a black box warning for tendon tearing.
I have a family member that was sure they had hEDS, but it turned out to be FQ toxicity. 20-30 courses over years that would degrade their health, one small bit at a time, unbeknownst to them. While safe for many, for some amount of the population, it can cause what feels like every bodily system slowly failing.
The frustrating bit of it all is how resilient the body is, and most common blood work shows up "normal."