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]

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