mkoven Posted December 1, 2008 Report Share Posted December 1, 2008 Very frustrated. I'd been doing so much better ans-wise and had been attending rehab three days a week. then this weekend I really messed up my left hip. It was already subluxating, but loosened even further, so that it won't stay in place for more than a couple seconds. I'm seeing my new physical therapist today and a doctor tomorrow. I don't really think there's much than can be done, medically. I've already had tons of therapy for my hips. And surgery doesn't really work well on eds joints. I hope this is just a temporary setback. I've messed up weightbearing joints before, and in my experience, they take a long time to settle down, and then rarely return to baseline. Just very frustrated. the mind is willing, but the body... Quote Link to comment Share on other sites More sharing options...
corina Posted December 1, 2008 Report Share Posted December 1, 2008 i am very sorry to hear this! i can fully understand your frustration especially because the rehab helped so much with ans fiddiculties. i hope your new therapist is able to find a solution!take care,corina Quote Link to comment Share on other sites More sharing options...
flop Posted December 1, 2008 Report Share Posted December 1, 2008 Generally I don't like using braces as stabilising one joint with a brace can put more pressure on other joints, however a hip brace may be something worth discussing with your doctor and physiotherapist. If it allowed you to continue rehab it may help your overall condition. Hip braces are rather cumbersome things that many doctors may not know even exist, essentially there is a padded belt part that goes round your pelvis/hips and a metal bar that goes down the side of your leg and is fastened by another padded strap round your lower thigh on the problematic side. Getting them on and off takes a bit of practice and adjusting of velcro to get the right fit. I know someone on a UK EDS forum who swears by hers so may be worth a try.Flop Quote Link to comment Share on other sites More sharing options...
mkoven Posted December 1, 2008 Author Report Share Posted December 1, 2008 interesting about the hip brace. I was talked out of one before, because they are so cumbersone. I already wear sacroiliac/pelvic support braces, since I trashed those joints several years ago.. I can ask the doc I'm going to see tomorrow though. The pt I saw seemed good and had some ideas. Fingers crossed. I just hate how much like a house of cards it all feels like. the joints indirectly impact ans, as I then can't move around as much, lose muscle, and pool even more. In fact my bad ans flare 2 years ago started at a time when my mobility was dramatically reduced.do you think I could just google hip brace? Quote Link to comment Share on other sites More sharing options...
flop Posted December 2, 2008 Report Share Posted December 2, 2008 Yep you can just google - I've just had a go and found these two examples, an Escort Hip Brace and a Safeguard Hip Brace II. I know those are on a UK website but they were just to illustrate the type of device my friend has.Hope you get some good advice from your doc and physio to keep you up and mobile.Flop Quote Link to comment Share on other sites More sharing options...
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