Nutritional Support & Supplements

First, I want to say to be wary of hormones.

Progesterone has been noted to loosen collagen, and I was given this by a doctor who said it would help me heal, and I developed issues in joints that were never before affected. Then I spoke to my geneticist and she confirmed that it does loosen collagen. She also said that estrogen is collagen protective, but the dose for an effect is so high that it would cause toxicity.

DHEA was given to me to “optimize” my hormones. I thought it would be okay because it is a testosterone and estrogen precursor, and not progesterone (from what I have been able to determine). However, within a couple weeks of taking it I was in a neck brace. After going off the DHEA I was out of the neck brace in just over a month. I didn’t know if it was related, but I searched many of the EDS patient forums, and I found others that also had joint loosening from taking DHEA. So, yes, it is anecdotal… but so is so much of our disorder since it is belatedly diagnosed, or often not recognized at all.

I do take many other supplements, and I will add here as I fill out this website!

There is no one right answer as we are all different! Others likely have different stories, and that is natural.