Nutritional Resources

Not everyone recognize or believes in the role that nutritional deficiencies may play in the experience of EDS and HSD, but I have personal first hand experience with some so I do. I was lucky to have both Vitamin C and magnesium recommended when I was first diagnosed, and both helped me greatly recover post onset-cascade of 2012. (I’m not cured by any stretch, but I can walk pretty well with just a cane again, when I couldn’t at all for a few months.)

Further, some people swear by vitamin and other supplements, while others do not. Some don’t seem to benefit much or at all from oral supplements. EDS looks an awful lot like scurvy when you think about it despite eating enough fruits and vegetables. My guess is we have poor absorption in our stretchy weak guts lending to this, in addition to the genetic collagen defects they’ve found behind all but hEDS yet.

Vitamins and Minerals
Vitamins and Minerals

I’m guessing that most positive nutritional supplementation experiences are also shut down as they pose a threat to Big Pharma, since if people could help make themselves well without medication, then who can they sell medication to? Politics aside, I’m not alone in this experience.

Vitamin C helps to lay in new collagen, and the more you have the better we’re finding, faulty or not. However, those who are sensitive or allergic to corn will react to the most common form: ascorbic acid, which is corn based. Alternative forms include: Sago palm based, camu camu, rose hips, tart cherry juice and moringa leaves. As well as Vitamin C shots as Madora found. And magnesium helps build smooth muscle fiber. (Think “inner tubes” – GI tract, vasculature.)

And additional water will just go through us until we have sufficient salt and potassium as many of us need for highly co-occurring POTS, which won’t “stick” and work either, without sufficient magnesium. The following links help explain how this can be.

That said, NOTHING IS A PANACEA. That is, no single solution will work for everyone, nor work the same. Results and mileage will ALWAYS VERY FOR ALMOST INFINITE REASONS. Allergies, sensitivities, metabolism, ability to absorb through your gut (which can ebb and flow), skin and ability to detox through liver and skin, dysbiosis if have any, and more. Like Dr. Afrin says all the time, it’s trial and error – aside from muscle testing which not all practice or believe in, there’s truly no other way to find out or know what works for you. Anyone can react to literally ANY thing. No matter how seemingly benign.

Nothing here is to be construed as medical advice. Please talk to your doctors or other health care providers always. And treat yourself based on lab results and clinical observations, not 23andMe reports in random sandboxes. Not all genetic variants cause problems, nor express fully. For real. (Treat the patient, not the SNP, always.) Updated December 8, 2024