I like what Mish Mash said. I agree that sometimes the most simple and obvious solutions are what is going on. If you read some of the theories on this website....sorry....but they are just absurd. I do think the EDS has some merit, or may lead in a direction that could give you some functioning back, just knowing what's going on and what makes it worse vs. better. I think that for some people, this COULD (but what do I know?) very well be a big issue. I think that not everyone on this website has the same disease, and we should all keep that in mind! Sorry to say, but no researcher grouped the people on this site....some of us will not have the same cause as others. We should all be vigilant to try to figure out if we actually have X, not Y.
My grandmother is actually blue and purple on her arms and legs, under the skin (her skin must be very thin), from bruising so easily; the bruises have just run together. That is an EDS thing, from what I gather. And she is "like me" with fatigue, so I am almost 100% positive she has EDS, but has never been diagnosed (and I don't talk to her, so can't really get her help, it's more of a moot point). Now that I think of it, my great grandmother may have had a little of the same bruising. I don't have that symptom, so far, but I have been told I have the stretchy vein thing by a specialist in dysautonomia. He said that my veins have too much collagen, so they are basically "stretchy," and so my blood doesn't pump up to the brain effectively. The doctor didn't go so far as to diagnose EDS, because he said it's genetic, and the genetic testing wouldn't change the fact that I DID have hypermobility syndrome, so he would treat no matter what. The extra collagen is also why I am super flexible. I would have liked to have the genetic testing, but I guess he wanted to treat no matter what, and not bother with more testing.
That doctor treated with Midodrine, but I couldn't get him to try Florinef before I stopped seeing him. He also preached avoidance of any drugs/substances that can make blood pressure lower, like the Trazodone I was taking for sleep. I think many things can make it worse, there is a list on dysautonomia websites of drugs that could make the condition worse. I personally have noticed that coffee helps me, seeemingly moreso than just a stimulant, so I think it actually helps my blood vessels and helps blood go upwards. A vasoconstrictor. But some with this condition find it makes things worse.
The other thing this doctor preached was strengthening the muscles of the legs. He said that when you have more muscle, especially in the lower half of your body, you will be better off with moving blood upwards.
Anyways.....for me, I think glutathione/B vitamin issues, like what Rich describes, are more of a factor. But, you just simply never know.
