Extreme Ehlers-Danlos Syndrome: Full-body tendinitis including voice and eyes — Supplements for connective tissue

#1

Extreme Ehlers-Danlos Syndrome: full-body tendinitis including voice and eyes — Supplements for connective tissue

This is my first post. I have an extreme case of Ehlers Danlos Syndrome. (Not sure how to post pictures, but if you look up the side-show performer Gary Turner, my skin is like his.) I’m in my 20’s and bed bound from cerebral spinal fluid leaks. I had my first bout of tendinitis when I was 9 years old. I now have it all over my body—ankles, wrists, triceps, rotator cuff, bicep, pelvic floor, plantar fasciitis, and the connective tissue involved in speaking and eye movement. My whole body basically crunches when I move.

I have read obsessively about tendinopathy. If there was a cure for it, it would solve 90% of my problems. Unfortunately, medicine is still shit at treating it. I believe the best I can hope for at the moment is to slow my decline.

I do a workout routine focused on slow eccentric exercises as this is currently the best treatment for tendinitis. For my unusually located tendinopathies, I’m mostly only able to do stretches.

My current supplements:

Rapamycin 6 mg 1x a week

Fisetin 1500 mg three days in a row 1x a month

Resveratrol

Astaxanthin

30g Collagen Powder with liposomal vitamin C

Semaglutide .5 mg 1x a week. (Trying it for migraines, but it also suppresses MMP’s, so I believe it may slow connective tissue degeneration similar to Metformin, though this hasn’t really been studied yet.)

For migraines/cognitive health:

Creatine

Nicotinomide Riboside

NMNH

PQQ

CoQ10

Riboflavin

Magnesium

Fish Oil

NAC

A glass of wild Blueberry juice every day

Also on every class of migraine med (CGRP, Botox, anti-depressant, anti-convulsant, beta blocker)

I’ve tried BPC 157 and Thymosin Beta, but they didn’t help. (They’ve been studied for tendon tears, but not degenerative injuries, which are very different). I also tried growth hormone peptides, but after further reading, stopped as it seems GH has little benefit for connective tissue.

I was on metformin for a while, but am currently trying some migraine medications that interact with it.

I was taking curcumin, but stopped as it interferes with Rapamycin levels, though I wish I could continue taking both as I believe it did help my tendon pain.

I’m aware of prolotherapy/PRP injections, but the benefits seem minuscule, and I don’t believe anyone would be willing to inject near my eyes or throat, which are the really debilitating places. Shockwave therapy does seem mildly effective based on the studies I’ve read, but also not applicable to sensitive areas. I would like to try EMTT, but would need to travel hours away to have it done, and would need multiple sessions of it, so not an option rn. Though it does look promising.

Wondering if anyone has any thoughts.

#2

What about retinoids? Sorry I’m not knowledgeable about EDS, but thinking about collagen generation, I know retinoids can help, so maybe some kind of systemic retinoid? Infusion? Obviously topical won’t work around eyes. High vitamin A (as retinol) can be a health negative, but maybe it’s worth a daily 10K IU supplement? That’s a safe TUL, FWIW. Anyhow, I didn’t see that in your stack - maybe doesn’t apply in EDS?

#3

When I was researching maraviroc chatgpt seemed to think it could be of benefit for hyper mobility issues that often go with EDS. Maybe worth researching and talking to a DR about based on the new studies on it for muscle loss. Tendon and connective tissue can apparently have issues due to the same pathway.

I’ve also looked at Chinese focused shockwave therapy machines which go for 3-5k. There is a guy on YouTube that says they helped with his injuries from being hyper mobile but he also indicated he did not have EDS.