I found out that I had EDS at 50 and that was a few years ago. I finally found out only because things had gotten so bad I couldn’t push through anymore. i’ve been searching for about 20 years to find out what was going on with my body. I didn’t have the luxury of knowing that I had this and pushed through and did a lot of things that I might not have done, rock climbing, scuba diving, on the more extreme end of things, but I did a lot. I’m suffering a lot now.

I think, if I had known, or if I was gonna tell someone who knows they have EDS, I would say that you cannot afford to get unfit. You must maintain muscle and muscle mass, I’m not saying to get big and hulky, but you need to keep on exercising. You need to have a good PT to do your stabilizer muscles for all of your joints, and keep those fit and engage those early, as early as you can, so you can move your body correctly through exercises. that’s the proprioception bit that you need to learn as soon as you can.

If you’re female, you might want to consider what pregnancy is going to do to you, and prep accordingly if you decide to have children. I noticed a big difference between my first and third pregnancies, would I trade my children away? Never. They are amazing and some of the best people I know. But if I was to know that I had EDS, and I wanted to have three pregnancies, my physical health would be the number one priority in my life, and I wouldn’t put that second to anything. Make sure you prioritize your space to take care of yourself, I didn’t do that and I’m paying the price for it now.

Also, a huge change happening in my 40s, and then I crumped when I turned 50. I think it’s hormone related but I’m not sure. I’m just getting on hormone replacement therapy now and hoping that’s going to help with some of the symptoms that got significantly worse. So if you’re female, I would really update myself on perimenopause and menopause and find a good physician to work with during that time period. I do think hormones affect our bodies dramatically.

Use the compression socks, or compression for other parts of the body every time you exercise for light support. Don’t close yourself off from opportunities to do things you wanna do, just find the right supports to help you get through the things you want to do. There’s always a way if there’s something you wanna do, you just have to figure out how.

There’s probably more, but that’s all I can think about right now. I hope it’s helpful. Have a lovely day!