Osteoporosis and Ehlers Danlos

@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.

I know this is an old post, but felt compelled to comment. I was diagnosed with hEDS at the age of 60, which explained a lot. I have the trifecta: hEDS, POTS, MCAS. Osteopenia showed up early and osteoporosis at 69. There were things I couldn't do well as a child, like running very fast or skating (wonky ankles) but I could dance! I have been physically active my entire life because I always feel better moving and doing things to stay strong. I have also heard the assumption that osteoporosis may be caused by "reduced physical activity." I can tell you from experience, this is not the reason and is just another form of victim blaming because the real reason/cure is unknown. I really hope that doctors and researchers will stop using this as an excuse for their inability to find the real cause of this devastating condition!

@skistenmacher. Hello. As with many conditions, I think that there are many factors that come into play with the development of osteoporosis. Diet, small bones, lack of enough weight-barring exercise and, lack of life-giving hormones after menopause. I started using a small amount of natural estrogen cream and testosterone at age 54, and my bone density got better. Unfortunately, I was exposed to high levels of Chlordane, an estrogen-mimicking pesticide, during the time that my breasts were developing. That is the major reason I developed breast cancer, not the small amount of estrogen after menopause for a few years. My mother and older sister took hormones until age 80. No cancer. Unfortunately, within a year of having to stop the hormones, because I have an ER PR positive breast tumor, I have Osteoporosis. There are some new medications on the horizon, and they look very promising. I cannot take any of the medications now offered for osteoporosis, so I hope it is soon before I break my hip.

@skistenmacher. Hello.
I have hEDS, and have mast cell activation syndrome, among other symptoms. I could not tolerate Fosamax. My doctor did not want to try anything else. I found this site helpful. The Mast Cell Disease Society. Most doctors don't seem to know much about MCAS, Nor do they know much about EDS, or that one of the conditions can be life-threatening.