Ehlers-Danlos Syndrome Support Group

Reaching for things and opening doors, especially the refrigerator. I dislocated my shoulder badly getting out of the tub. I also dislocate things in my sleep. Opening jars or turning on and off faucets is also difficult. Getting into and out of a car is hard on my knees and hips.

Getting into and out of the car hasn't been good for my back. I noticed during laundry that I have a bad habit of sitting on the machine with palms face down. I think normal people wouldn't even get into that habit, because it would automatically be uncomfortable for them.

I usually hurt myself doing the easy and lite things too. I think it's because our muscles hold us together during more strenuous activity. Sleeping is the worst for me me because I relax and everything finds its way out. I also notice that bending a joint with lots of pressure on it is bad and bending them to far. I feel my joints separate when fully bent. I am still trying to find exercises that I can keep my muscles strong without hurting myself. Yet to find any...

Know off any?? Thanks!
Keep on smiling!!

That depends on which muscles. There are so many different exercises.

I just thought that carrying heavy bottles is bad for my hands, probably even worse if they're without handles.

Well most or all of my muscles. I worked construction my whole life until the pain and dislocations just became to unbearable. Now I mainly have a desk job. It seems that loosing the muscle strength from working construction has taken a toll as well.

I do about 50-100 sit ups every morning
stretch for 30-40 minutes
I have tried water aerobics and my hips and knees dislocate frequently. I have also tried yoga and find that most of those position can end up hurting me too.

I know for some reason that I think I will find something that will work and I can get back to a normal life. I guess denial is easier than giving in. My whole life I have been physically active with sports, hiking, building and creating things. I just don't want to believe will never be able to do these things again.

I pray for all of you, and thank you so much for your support!

There's no reason to stretch for long periods, and it probably places extra pressure on joints. As strange as it sounds, I don't hurt myself lifting weights any more than I do with normal activities. Careful lifting with machines might be helpful.

I caused a slap lesion in my shoulder by reaching down into a bag of chips that was in my passenger seat.
I also, took Karate for several years before we realized that I had hypermobility type. Have had tears in both hips every since I was nine, that sometimes get caught just while I'm sitting on the couch.
Among other silly injuries.

As you all know, we injure ourselves doing anything, including nothing! The deeper problem is that we are constantly injuring ourselves whether or not we recognize it. That's where all the chronic pain comes from. Every move you make (or don't make) has the potential for something to slip out of place and pinch a nerve here, stretch a tendon or ligament too much there, etc. These "microinjuries" pile up, every minute of every day. The only thing we can do is try to stabilize the joints as much as possible, then manage the pain so that we can keep moving. I've been working with an orthotics company that is making a suit for me to help hold everything together, so hopefully I can work out more and get some of my muscle strength back. (I was in a wheelchair for 3 years after having pelvic fusion surgery.) They were able to fit me with knee braces that have alleviated a ton of pain for me and allow me to walk without canes or walker for the first time in years. They are bulky and uncomfortable,so definitely not a perfect solution, but until some scientist finds a gene therapy that can fix our collagen from the inside out, I think the exoskeleton suit road may be the best bet for lots of us. This way we don't have to dstroy our internal organs with meds.