Ehlers-Danlos Syndrome Support Group
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.
Greetings everyone, I am looking for advice of how to minimize dislocations of the hip(T7 if it matters...). I have personally made the chiropractor a mint when I have to visit one at least once a week. It fall out more than that but I often try to tough it out until the inflammation and pain get out of control. Once in a blue moon it spontaneously reduces, but usually I am not so lucky. Any recomendations of orthotics, excersizes, ect? Also what have other people done for SI joint swelling at night to preserve some remenant of a sleep pattern? Thank you for your time.
Chris
First off, I can't stress how important it is to prevent the dislocations. The more you have the more damage it will do. I went undiagnosed for 7+ years and was given all the wrong treatment and exercises which severely damaged my joints long term. I'm currently being fitted for a wheelchair as just standing will cause my joints in my legs to "fall" out of the socket.
For bracing you should go for a bilateral hip brace. You should also look into a walking aid, at least for your bad days. It will take some pressure off your leg and help prevent damage. I've progressed from a cane, to modified forearm crutches, and now to a chair. (A walker is another option, I just found it too hard on my shoulders.)
Beware when you start bracing, it may cause other joints to become unstable as well. Your knees and ankle should be checked for hyperextensions as well, as it can cause your hip to become more unstable.
Another thing you may want to look into is kinesiology tape. It's not the best in terms of support for dislocations, but it's good for circulation, swelling, and pain management.
You could also look into prolotherapy, an experimental treatment for EDS patients. A doctor injects your joint with an irritant to cause scar tissue and promote tissue regeneration, to help stabilize and tighten up the joint again.
Hope some of these work for you :)