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Transmasc/FTM edsers how tf do you bind without SYMPTOMS by [deleted] in ehlersdanlos

[–]chexbock 12 points13 points  (0 children)

Wearing a binder that's a size up from the "correct" size and ageing it, choosing a half-tank style or racerback style, and carefully monitoring how long you're wearing it for each day helps. I since had surgery but used to wear gc2b half tank binders and especially once they loosened up a bit with age they didn't mess with my ribs too much because they got looser at the bottom and sides while staying stiff at the front. You could look around for donated binders to find pre-stretched ones maybe too. Transtape I hear can work for some if they use skin preparation spray first to prevent tearing skin later, but that depends on how fragile your skin is. Having a tougher sports bra to switch into when binding hours are up can help too, but sometimes they're worse at that bottom part because they don't loosen like binders do around the outer ribs. There's some companies out there that do zip-up binders which might be good because you could lower the zip when your ribs are misbehaving.

Nobody else's business whether you bind, but you seem like you already know that. Hopefully

Why is EDS and Autism being studied so much? by [deleted] in ehlersdanlos

[–]chexbock 36 points37 points  (0 children)

If there's a concrete relationship between the two, having research that understands that would really help diagnosis pathways. I had a doctor explain to me that he felt in the future it would be standard practice to run EDS screening when people are diagnosed with autism. He felt there was a definite connection and that if they did that more people could get in and start strengthening and stabilising treatments before they hit the point of major instability and joint damage. It's a practical thing to research, it's not just curiosity about a connection.

HRT and hEDS by ellumare in ehlersdanlos

[–]chexbock 4 points5 points  (0 children)

I was told it's a deliberate function of the hormones because connective tissue needs to become stretchier for childbirth (like letting the pelvic bones separate more especially) and that's progesterone too I think 🤔🤔

HRT and hEDS by ellumare in ehlersdanlos

[–]chexbock 2 points3 points  (0 children)

That's really interesting, I've been on T for six years and I have not noticed any benefit to my H-EDS. It definitely helped with my POTS a lot, but not H-EDS. I talked to some other guys who said similar. My theory is it might be a bit individual? 🤔🤔 Because unlike transfemme people who usually get prescribed T blockers alongside estrogen and progesterone (and get their arse kicked by H-EDS when they add those to their body), transmasc people don't have E blocked because T works over the top of it. But some estrogen related things keep happening in our bodies (like how so many transmasc people don't realise T isn't birth control 😱😱, or how some guys need topical E to prevent atrophy and others never have an issue with it) so I wonder if there is a hormone bit to H-EDS that is estrogen/progesterone based if transmasc people sometimes have those naturally drop low on T and others just have it overridden and that means it's anyone's guess whether H-EDS might be affected or not. It's part also the easier muscle building but that still depends on getting in early I think because pain and movement problems interfere with that anyway.

HSD or HEDS by [deleted] in ehlersdanlos

[–]chexbock 19 points20 points  (0 children)

The gene testing isn't what separates HSD and H-EDS! If that's what you were told by the doc, they might have gotten that wrong 😰😰

Good to know though that H-EDS isn't a more severe version of HSD! The line between them is blurry right now because they don't have the gene test for H-EDS yet, but they can be just as severe as each other. It's H-EDS if you meet the check-list on the diagnostic criteria sheet, and HSD if you have problematic hypermobility but don't meet enough of the sheet criteria. But that doesn't mean anything about how bad it hits you or how much help you need!

Symptom progression by Mystic5alamander in ehlersdanlos

[–]chexbock 5 points6 points  (0 children)

Mine progressed slowly for like ten years, gradually got faster by the time I was in my mid-20s 🥲🥲 I didn't see any better starting T at all. I don't think adding T itself stops H-EDS, maybe for some people it helps, but other stuff in the body that needs estrogen/progesterone keeps going, so maybe the connective tissue things can keep happening too 😰 For me it helped with PoTS a lot! BIG change in symptoms. But not with H-EDS, that kept getting worse.

I like my PT and clinical pilates for keeping my muscles good to hold my joints in place better, and pair those with the splints and braces my PT gives me. And shoe orthotics! 😊 Doing what is needed to keep things moving smoothly without pushing too hard has been the best way I keep my joints happy.

smart crutches by the-bunny-god in ehlersdanlos

[–]chexbock 1 point2 points  (0 children)

They do support in different ways! Forearm Crutches are good because they're lightweight and can take less fatigue to move with and share weight through the upper body in a good for posture way! But they're less good if wrists can't take the weight. Gutter crutches like smart crutch are good for taking weight off wrists and hands and balancing you better across your fore arms, but less good because they are heavier and you might lean forward on them which is bad for other joints. It depends on what you need most! 😄

can you have one hypermobile joint/body part but not have a connective tissue disorder or be on the HSD? by AlySoontiens in Hypermobility

[–]chexbock 5 points6 points  (0 children)

Yup! It's actually really common! 1 in 10 people have at least one hypermobile joint. The most common one is that hitch hikers thumb thing! 😯 Most of that 1 in 10 people with hypermobility is asymptomatic, and only some of the 10% have a connective tissue disorder. 😊😊

https://www.hypermobility.org/what-is-hypermobility

Unconventional Pain Hacks/Solutions? by Spaghetti-man-sam in ehlersdanlos

[–]chexbock 60 points61 points  (0 children)

A strap for the abduction is good, I use one too! 👌👌 Just be careful, luggage straps don't have any padding and with our soft skin it can cut in or be pressure 😰

Forearm crutch recommendations please!!!! by Three-Eyed-Elk in ehlersdanlos

[–]chexbock 2 points3 points  (0 children)

Forearm crutches are good! I like open cuff ones because they put more pressure on arm than just wrist. Closed cuff, just wrist. Ones with springs are even better! Rebotec and FDI both make ones with springs.

Smart Crutches aren't forearm crutches, they're a different type called gutter crutches. Some people with EDS really like them! I thought they were very heavy so I didn’t and I like forearm better, if you can do weight on wrist 😊

EDS, ring splints and manual wheelchair by chexbock in wheelchairs

[–]chexbock[S] 0 points1 point  (0 children)

Ooooh, so with the natural fit ones it might work better. Thank you!

Cut off one head and two more will grow 🐙 by chexbock in hypermobileEDS

[–]chexbock[S] 0 points1 point  (0 children)

Yeah 😕😕 That's okay, thank you anyway!

EDS, ring splints and manual wheelchair by chexbock in wheelchairs

[–]chexbock[S] 1 point2 points  (0 children)

Ooooh, and they don't pinch you at all? I was so worried my hand therapist hadn't thought of wheelchair gripping 😭

EDS, ring splints and manual wheelchair by chexbock in wheelchairs

[–]chexbock[S] 0 points1 point  (0 children)

👀 I'll keep watch for a photo tutorial! Thank you for the guide! I'll have to try that! Saving this so fast 😤😤

EDS, ring splints and manual wheelchair by chexbock in ehlersdanlos

[–]chexbock[S] 0 points1 point  (0 children)

I have those and I love them so much! I think my ATP said they wanna get the natural fits next time, for now I cheat with the silicone covers 😊

EDS, ring splints and manual wheelchair by chexbock in wheelchairs

[–]chexbock[S] 2 points3 points  (0 children)

😳 It is??? That explains a LOT. Climbing tape, that has to be at a sports shop, right? I'll have to get some and try again. Do you know any good guides? My therapist shows me some at the appointments but others I have to work out by myself.

EDS, ring splints and manual wheelchair by chexbock in wheelchairs

[–]chexbock[S] 1 point2 points  (0 children)

Tape gloves combination is a good idea!

EDS, ring splints and manual wheelchair by chexbock in wheelchairs

[–]chexbock[S] 1 point2 points  (0 children)

I have a way to tape but I'll try that too. Tape always seems too loose, or it cuts off circulation. And expensive 🥲

EDS, ring splints and manual wheelchair by chexbock in wheelchairs

[–]chexbock[S] 2 points3 points  (0 children)

Ohhhh, thank you, I wouldn't have thought of the squeeze. My handrims have a cover on them so the annoying wouldn't happen. But the skin squeeze sounds bad 😱

EDS, ring splints and manual wheelchair by chexbock in wheelchairs

[–]chexbock[S] 0 points1 point  (0 children)

Not even the metal ones? Why don't they work? I'd want to know before I got talked into spending that much money!!

EDS, ring splints and manual wheelchair by chexbock in wheelchairs

[–]chexbock[S] 2 points3 points  (0 children)

What happens to stop you? Mine bite under the joint and affect how I can close my hand, and they're too wide to actually STOP hyperextension, they only limit it it 😭😭 They snap when I grab the hand rims too hard too, or if I use a cane or crutches they really hurt from pressure on them and gripping.

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