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Osteoporosis and Ehlers Danlos
Greetings,
I have a tentative diagnosis of Ehlers Danlos Syndrome and was also diagnosed with Osteopenia in my Mid 40’s, which is now, 22 years later Osteoporosis at -3.5. I am now looking at medications. Some of the health professionals I’ve seen believe the 2 are connected. Does anyone else have these two conditions? I’d be interested in hearing about your experience managing these issues as co- occurring.
Thank you!
RB
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@reneebee I am curious why they would be connected. Many of us have loss of bone density after menopause, due to loss of estrogen.
I have hypermobility syndrome, a mild form of Ehlers Danlos. I too wonder if it has an influence on osteoporosis, which I have. I'm pretty sure that my stretchy soft tissue has something to do with my osteoarthritis and my broken bones.
I tried for years to help my bones naturally, but it didn't work. I broke 5 bones in 18 months. I could only tolerate a half dose of Tymlos, and I took that for 10 months. I am now trying Forteo. In the last 6 months, I have gained in my spine according to REMS Echologht, but have lost a little in my hips
Hello. I just Googled, The connection between EDS and osteoporosis. It is being researched. The possible connections are: 1. Reduced physical activity because of joint, lung, etc. problems due to EDS. ( That is one of my EDS- osteoporosis situations). 2. The " quality of EDS bone structure." 3. Certain types of EDS, like the rare Kyphoscoliotic EDS. All of my female, maternal, relatives have different levels of hEDS and bone breaking Osteoporosis.
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