3 ms·
I have this as well - I only found out a month ago after decades of searching and dozens of doctors, hundreds of tests, across 4 countries, all telling me there
by abz10 5y ago
I have this as well - I only found out a month ago after decades of searching and dozens of doctors, hundreds of tests, across 4 countries, all telling me there is nothing wrong. It should have been super obvious in retrospect. The vast majority of people who have hEDS will never know it. I highly recommend everyone check themselves for it. It could easily be 1% of the population. I only found out when my sister recently came down with CFS/ME in much the same way I did so I searched for genetic causes of CFS/ME. It can affect your whole life in a way you don’t even know isn’t normal, because everyone around you is telling you it is normal.
- sterlind 5y agoA lot of people seem to do well until their 20s and then come abruptly crashing down. That was the case for me. As a kid I had pain and could do all the crazy party tricks, but was more or less abled. Now at 30 I've fully dislocated my shoulder taking my jacket off, and need a walker. I think transitioning hormonally accelerated it.. estrogen and progesterone loosen ligaments, and I lost my muscle mass from T.