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Osteoporosis and Ehlers Danlos
Osteoporosis & Bone Health | Last Active: May 5 5:28pm | Replies (6)Comment receiving replies
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!
Replies to "I know this is an old post, but felt compelled to comment. I was diagnosed with..."
@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.
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@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.