Ehlers-Danlos & Exercise

Hi there,

I have EDS as well, type 3 hyper-mobility. I just went through 3 months of physical therapy, and this greatly improved my entire life. I have POTS as well (no formal diagnosis). If you haven't been able to see a rheumatologist who can recommend a trustworthy physical therapist, I would highly suggest that you try to do this, especially considering your knee injury. There is a lot you can do with just a therapy band.

You've probably already heard all this, but this is what I have to add:

DO
build core strength (I like doing plank on my elbows)
increase balance and stability
use your body weight and bands to increase strength before adding weights or using machines
indoor or outdoor bicycle (without using a crazy amount of resistance)
swimming (recommended highly by all doctors I have seen)
elliptical if you tolerate this well
pilates
I learned about this machine in physcial therapy and it is very helpful (they look different at each gym) http://www.gtechfitness.com/inflight-fitness-ct-mhp-multi-hip-weight-machine.aspx

DONT
high intensity/high impact (running, stair climber, "boot camp" classes, etc)
yoga (if you're hyper-mobile)
use of this machine http://athleanx.com/wp-content/uploads/2013/01/gym-workouts.jpg

I know its very hard and wish you well!!! I hope you are getting the support you need.

I know this was posted a while back, but I was just diagnosed and got all the recommendations on what to do. My doctor said swimming is really good, but since I also have pots to never go swimming alone, in case by some freak incident I pass out in the water even though I have yet to actually pass out from it, and if you have shoulder problems like me use one of those little boogie board so you don't have to move your shoulders, if you use free weights no more then 3lbs only use machines for heavier lifting since those can help control your range of motion.

Another EDS girl here.

Can't really add to what's been said! Swimming and aqua aerobics, core strengthening, pilates and low impact cardio. I personally hate cycling, it hurts my back, but it is a good one if you don't have back problems!

I'm currently doing bodyweight training, I was about to try C25k but this thread has reminded me that I'm really not supposed to do that! Not sure what to do instead though, maybe I'll just walk/fast walk it.

Here it is 2023, so many years later. I was diagnosed in 2018 when I was 39. I've met SO MANY people who have hEDS (EDSIII). I believe doctors are no longer thinking it's as rare as they once thought. My doc is having me focus on food vs exercise for now, though I don't have diagnosed POTS (I do have heat sensitivity though and my heart races in it).

Yes, hello there! I'm also part of the zebra family I had a chat with a specialist and her recommended pt (unfortunately both not in my town but quite far away) and they recommended partially focussing on strengthening the big muscles, but especially also the smaller ones that sit deeper and hold the joints together. I'm quite naturally muscular for some reason, thus my problems aren't as severe as others. Some other things noted/observed over the years

* hormonal birth control totally works for me. If I want a subluxation or just more pain I need to take a break from the pill. Which I don't and thus mostly use it without a pause. One needs to find out which hormones work for whom though.
* no yoga, thorough stretching, trying to achieve the splits or anything of that. It's not worth it.
* actually, I'm mostly in a phase where my muscles are chronically tight. It's not really that desirable but my muscles have taken over the function of many tendons and thus keep me stable. I only get massages if I really, really need them and otherwise just accept that I'm somewhat tight.
* Puberty is bad, and so is pregnancy, and menopause. You can't do a lot against this, thus accept to be worse off then.
* Some women microdose testosterone to build more muscle and have more joint support. Many EDS people are also trans and noticed the same positive effect when taking male hormones.
* Next to a higher than average number of people with EDS are also a part of the LGBTQ+ family, many are also neurodivergent. Expect odd reactions to medications. Or not being taken seriously by doctors.
* Meh: many painkillers, especially strong ones like oxy don't work for many people with EDS. Doctors often don't understand this and might think you're a drug addict. Also, local anesthesia at e.g. dentists might not work for long or not at all.
* A positive for me: I'm super clumsy, but I hardly ever get injured seriously or if I do then doctors end up searching for expected associate injuries and don't find them. Yay!
*