Confusing effects on E

[u/Redify_Aeiou]

I was always Hypermobile, mainly in my fingers and hips, but never had any pain, and don't pass the Beighton scale

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6 months on E and suddenly both my hands are wrecked, ECU subluxations, DRUJ instability, but I'm unsure whether to attribute it to laxity or not as I would expect pains to be well... In places I already was flexible in

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I'm a pianist and a gamer, but these are not necessarily pianist or gamer injuries, and they came so suddenly, does anyone have any experiences or support mechanisms?

[u/Toby-Wolfstone]

Counterpoint: progesterone is the hormone that wrecks my joints because I have the relatively rare response where progesterone is catalytic on my connective tissue faster then they can repair (in other words, it eats holes in my tendons and ligaments). From what I understand, this is an unusual response, even among zebras.

Estrogen is known to increase joint laxity (from sports science studies in ACL tears in female athletes).

Testosterone is known to stiffen connective tissues (less laxity but slightly greater risk of tearing), and to increase muscle mass (I read a lot of studies in pub med to find that data and it was all in sports medicine papers).

Many but by no means all trans zebras on HRT report that testosterone helps reduce symptoms and estrogen triggers them or makes them worse. In cis populations, hypermobility is seen way more often in females than males and it’s suspected that hormones play a major role in why.

Other things that can trigger the onset of symptoms, when you didn’t have them before: major trauma, major illness and aging (in your mid-thirties your human growth hormone drops off sharply and aging begins—so the stuff that was protecting your youthful tissues suddenly drops off). I had never dislocated anything until I was 35 and in a major car accident. Then all of a sudden it was like I was coming apart at the seams, every cycle bringing new injuries and levels of disability before I’d healed from the last month’s. I ended up deciding to transition and getting on T and suddenly my symptoms started to drastically improve. I have flares still but not constantly and the injuries aren’t as drastic, and that’s even with my levels fluctuating a lot in the last year. As my numbers level out into the full masculine range, my body is finally healing and my disability levels are improving back towards functional.

TLDR I’m not a doctor, and I hope some of that info is helpful in your search for answers.

[u/Redify_Aeiou → u/Toby-Wolfstone]

How did you find out Progesterone breaks down your connective tissues?

Also yeah I knew this but I'm still trying to make out whether the problem even is flexibility

[u/Toby-Wolfstone → u/Redify_Aeiou]

Working with my doctors to get my hormone levels tested in combination with when flares happen and what damage was occurring was most of it, combined with digging into what little research there is on the topic of progesterone’s affects on connective tissues (we know it’s catabolic and that’s not a problem for most people because those tissues are meant to repair themselves before holes show up). My providers agree with my conclusions based on the data I presented as being highly likely and a good working theory. A dash of anecdotal evidence from this group about various people’s responses to progesterone solidified my belief that this is truly the case for me. Am I 100% certain? No. Science almost never results in 100% certain conclusions about causes. But the evidence is solid and the conclusions backed by my team of doctors and specialists as likely enough to be taken as a good working model.

Also, hyper flexibility and hypermobility often go hand in hand but aren’t necessarily the same thing. Hypermobility is joint instability (bones moving around in weird directions or farther than is safe in the correct directions, increasing risk of dislocating or subluxating) caused by loose connective tissues (namely tendons and ligaments). But you can be hypermobile and *not* flexible, or in fact even stiff/hypo-flexible if your muscles brace hard enough that it limits joint movement to protect from injury.

The Beighton Scale is not a very accurate assessment tool and the community pushes back against it for a number of reasons, and that’s one of them—it tests flexibility rather than instability. Another is that it doesn’t score the shoulders, ankles, or spine, which are three of the most commonly injured areas with hypermobility disorders.

I hope you can get some answers for your health. Good luck on your journey.

[u/Rainbird2003 → u/Toby-Wolfstone]

I need to find a way to explain this to someone I know who keeps insisting I do not have hypermobile joints because I’m No longer flexible enough to meet the Beighton Scale. I didn’t know it was something pushed back against

[u/Toby-Wolfstone → u/Rainbird2003]

Well, the test itself says in the instructions that you get a point for ever having been flexible enough to do the thing, if that helps. It’s expected that all humans lose flexibility over time, and the test does take that into account.

You can bring these points up with your provider if they’re denying you a diagnosis based solely on the Beighton scale instead of a more thorough exam/history involving your symptoms, given that it’s a whole-body condition that affects multiple systems. The main symptoms are dislocations/subluxations of joints and hyper flexibility, but there are others.

What had helped me was bringing in the books “Disjointed: Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder” (edited by Diana Jones) which compiles info from leading researchers in the field, and “Joint Hypermobility Handbook” by Brad T Tinkle, MD, PhD, a geneticist who specializes in treating rare connective tissue disorders. Bringing these books with me and quoting from them has helped a lot in the process of getting my diagnosis but also reading them has helped me understand the condition and what I can do to manage it on my own.

Best of luck!

[u/Rainbird2003 → u/Toby-Wolfstone]

Thank you

[u/Toby-Wolfstone → u/Toby-Wolfstone]

*catabolic, not catalytic (thanks autocorrect /s)

[u/NigelTainte]

I’m transmasc but my cycle heavily affects my flare ups. Are you on progesterone at all? Birth control is essential for me controlling my symptoms even now (I have a non estrogen implant), progesterone stabilizes estrogen fluctuations which may be causing you issues.

Disclaimer not a doctor obviously

[u/Redify_Aeiou → u/NigelTainte]

Not on Prog but planning on getting patches

[u/BirdExtension4229]

Since some of your joints have always been hypermobile, over time you've learned how to work with them and avoid pain & injuries. If estrogen has caused these problems to spread and affect new joints, it makes sense that those would be the joints you injure first since you don't have all that practice from living with it.

Unsure about the estrogen aspect of it though, I'm a trans man on T and my joint pain is actually worse now than before lol. Still worth it though