I also have EDs. I did not know what it was until my sister was diagnosed. I managed to do okay, as long as i was careful about movement, for a long time (though I once tore my rotator cuff opening a door). Then, one day a woman shoved me on a bus, and it actually caused me to turn in such a way that my uterus tore. I was put on bedrest. This was not long before I was married, and I ended up packing on a lot of weight because of the forced inactivity. I was lucky to manage to heal from the tear, and eventually, with a lot of bedrest and very close supervision, I was able to carry two babies to term. Issues in the birth of my son (torn uterus not repairable this time), I had to have a hysterectomy. Since then, my hypermobility and general joint issues have significantly increased. I find my knees bending the wrong way, I wake up with at lease five things out of joint every morning. I can't walk in the morning about 50% of the time. My doctor thinks I have rheumatoid arthritis now, connected to the EDS. I have also started having very significant bruising beyond what I used to get.

You are so right - it IS incredibly discouraging! Especially when so many doctors don't know anything about EDS and will just try to claim that anyone overweight is just lazy or has a low pain tolerance, etc. When I can, I do low impact yoga - mostly Kundalini. I also walk when I can. I would like to swim in a safe environment (ie: lifeguard on duty in case I dislocate something and can't get back to the edge), but i haven't found anything. I have had people say to me that only skinny people get EDS, but I know they are wrong. Some of us have it, and the fear of more damage (or the insistence that we must be on bedrest) adds to weight.

I have been seeking different things that i can do while seated that allow for increasing strength without too much joint strain. i am hoping to slowly build the strength back up and maybe be able to compensate for the lack of reliability in my joints. My health insurance, of course, covers absolutely nothing for EDS, so physical therapy is beyond my means.

I have EDS and I have always had problems with my right knee and ankle and I couldn't do any sports or exercise when I was in high school. I have gained 50 pounds. I started out with stretches and some exercises to strengthen my injury prone areas. I do mild exercises once I get use to those I go up a little. If I am sore or start to feel like I am I stop and rest for a couple days. Be easy but push yourself at the same time. If you have a hard time with it I would talk to your doctor you go to for EDS.

Hello there! The best ways I've been able to exercise while avoiding sublux issues have been swimming and cycling. I don't know if it works for others, but going for a bike ride usually helps stretch my spine out in a slow way, and sets my SI joints back into place. A few EDS friends have started doing low impact water aerobics at the community center- actually joined the seniors class, but it seems to be working really well!

Hi, also new here.

I was diagnosed with EDS about 3 years ago, after years of boom-busting on exercise to try and control my weight, and inevitably trying too hard and subluxing something, because I had the legacy of people telling me for years that I was lazy because I couldn't do as much.

I've decided this year is the year to get exercising on track. I've got much more strength these days from doing pilates twice a week, and that's really kept me on my feet. There's a limit to the other exercises I can do. Unfortunately I am hypermobile in my feet, and regularly sublux/dislocate my toes. Which makes walking tough at times (although I try to do more). I do the same with my ribs, which also rules out swimming, which makes me pretty cross, as I love swimming. However, I got a Wii Fit last year, and found that's really good to use, because even on bad days I can do something, even if I'm only doing some hula hooping for 10 minutes.

I'm also trying to eat better, and eat more, as I've also spent years eating too little, which hasn't helped with my weight issues. I've not really told anyone about this part yet, since I can't stand when I'm eating better people telling me I am or am not allowed certain foods. That's just irritating!

Anyway, I'm pleased to find this group of people who understand how tough it can be with this condition, and I hope you all reach your goals, whatever they are!

Hi, I'm Brianne, I'm 22 (23 in Feb) and I have EDS III. I'm 5'4" and I have 94 pounds left to lose. I'm getting married next May, so between wanting to lose weight for EDS reasons, I also want to look great in my dress and not be uncomfortable on my big day. Feel free to add me! I'm online everyday to log food (I don't have the app) and I frequent the forums.

ETA: I was diagnosed with EDS last year. Finally some answers for what I've been experiencing.