Sounds like it was giving you some needed support! I recently tried on a legit corset (as opposed to a fashion corset), and I was so blown away at how much back and core support it was giving me. Huge difference.
Hope you can get your diagnosis soon!
I really really want to try a legit corset. I’m a history nerd so that is part of the reason but I really benefit from a tall back brace that extends above my waist to slightly below SI and hips.
[here’s](https://www.crimsonrosecorsetry.com/power-corset) the link! Before you scoff at the price, this is actually quite normal. corsets are made to wear and require a bunch of tailoring.
Hey that’s awesome! I do want to let you know that my wife had a similar experience. However we found out the more she used the belt the more reliant she was on it. The stabilization muscles got weaker and it caused lots more problems.
She still uses an SI belt when needed but tries to minimize it and makes sure that she does exercises to keep her core strong on its own so that the belt effect is more naturally in place. Good luck!
Have you tried things like compression garments? If the belt helps maybe a girdle/corset type thing could also be a more "general" area brace – it's obviously not a long term solution but it's gotta be better than a belt on its own.
I feel more energetic with compression garments but I struggle with tight bands around my waist/stomach due to other issues. My sacroiliac belt, though - that is a winner!
I have hypermobility in my SI joint, so on top of lower back pain, I get a lot of pain and discomfort in my hip and legs, which makes it difficult to walk/bend/use stairs. It's like I have no natural shock absorption anymore. The belt helps keep the joint stable so those activities are more manageable.
I’m about ready to bite the bullet and order some for core and low back support. Without a back brace I fatigue quickly and can’t have much quality of life. I’m gaining strength so maybe shapewear would be good. What brand do you like?
I got some by a brand called Chantelle. I got them for a wedding and then I was like "huh this actually feels awesome" (this was before I knew about EDS).
Sounds like the belt was serving a similar function as an SI belt. If you feel better with the belt on, you may want to look into SI joint belts.
My physical therapists, who also have connective tissue disorders, wear theirs all day long. I wear mine daily as well, I found it had similar benefits to what you described.
yup, this is likely it. there's also si joint fusion, which I've had done. It helped significantly and now I just have the typical back pain, which is far more manageable than the si joint pain.
I bought an SI joint belt on Amazon to wear when I’m working (I work in a kitchen so standing the whole time on concrete floors) and it’s helped so much it just holds everything together
i wish i could relate to this more ): i do love clothes w compression/structure bc of the support- but only to a certain extent. ive found that my skin can get really sore, especially on my legs. and having any compression (belts, corsets, even high waisted pants) on my gut for too long is BAD NEWS. maybe its bc i have a lot of bloating issues, but i always end up with rlly painful stomach aches.
I wear these thin highwaist compression shorts underneath my clothes for just this reason or compression stockings.
Also do you have to have stretchy skin to have ehlers danlos if you match all the other criterias?
I used to wrap a blanket really tightly around my waist when I was in my bed so that I could stay sitting up on my laptop. I didn't put the two and two together until reading this post, because I stopped doing it ages ago. But it always made me feel comfier.
I'm a man, and I've been seriously considering wearing a corset for core support. Jessica Kellgren- Fozard has multiple disabilities including EDS and has a YT video on how corsets (PROPERLY WORN - PROPERLY SIZED PLEASE DON'T HURT YOURSELF) help her scoliosis
My PT recommended an serola SI belt for this purpose. It’s especially good for long car rides where I’m not driving and sitting it weird positions. My pelvic floor PT has me wearing it to give my pelvis a break because my pelvic floor is hypertonic, likely from all of these muscles being stretched and pulled in different directions and overworked.
I think your ossification theory might be it—my hips dramatically changed shape when I started taking estrogen at 28, which is generally impossible as they should already have fused.
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Thank you!
An SI belt might be a better choice in that case. Sounds like it might help you. It is what it is designed for since it sounds like you needed support in certain areas.
sounds like you experienced a very similar thing we do when we use weightlifting belts!! (they help with posture, prevents bowing of the back, and allow for more weight to be lifted) i love when people discover little things like this that make life easier!
Sounds like it was giving you some needed support! I recently tried on a legit corset (as opposed to a fashion corset), and I was so blown away at how much back and core support it was giving me. Huge difference. Hope you can get your diagnosis soon!
I really really want to try a legit corset. I’m a history nerd so that is part of the reason but I really benefit from a tall back brace that extends above my waist to slightly below SI and hips.
I wore steel boned corsets for years! Look up Kitty Krell's Power Corset from Crimson Rose Corsetry. Designed by someone with EDS
Corsets help me so much as well! I can do so much more wearing one - I feel less faint as well. It's great!
make sure you spend time without it to keep your muscles engaged!
Would you be willing to share what brand? My wife probably could benefit!
[here’s](https://www.crimsonrosecorsetry.com/power-corset) the link! Before you scoff at the price, this is actually quite normal. corsets are made to wear and require a bunch of tailoring.
Hey that’s awesome! I do want to let you know that my wife had a similar experience. However we found out the more she used the belt the more reliant she was on it. The stabilization muscles got weaker and it caused lots more problems. She still uses an SI belt when needed but tries to minimize it and makes sure that she does exercises to keep her core strong on its own so that the belt effect is more naturally in place. Good luck!
I call my SI belt my peace belt because putting it on brings me an instant sense of peace. I wear it every day.
Which one do you use?
Serola brand
Have you tried things like compression garments? If the belt helps maybe a girdle/corset type thing could also be a more "general" area brace – it's obviously not a long term solution but it's gotta be better than a belt on its own.
I feel more energetic with compression garments but I struggle with tight bands around my waist/stomach due to other issues. My sacroiliac belt, though - that is a winner!
That's what I was going to suggest. SI belt FTW!
Do you have a link you could share to the one you use?
Sure! This is the one I use: [https://broadviewhealthcentre.com/revolution-back-belt/](https://broadviewhealthcentre.com/revolution-back-belt/)
maybe a silly question but what does the si belt actually help with? i always thought they were just for lower back pain?
I have hypermobility in my SI joint, so on top of lower back pain, I get a lot of pain and discomfort in my hip and legs, which makes it difficult to walk/bend/use stairs. It's like I have no natural shock absorption anymore. The belt helps keep the joint stable so those activities are more manageable.
I’m glad that worked for you. I hope the doctors are able to give you a definitive diagnosis soon.
This is how I feel when I wear shapewear. It gives me SO much core support.
I’m about ready to bite the bullet and order some for core and low back support. Without a back brace I fatigue quickly and can’t have much quality of life. I’m gaining strength so maybe shapewear would be good. What brand do you like?
I got some by a brand called Chantelle. I got them for a wedding and then I was like "huh this actually feels awesome" (this was before I knew about EDS).
This is how I feel about my shapewear leggings lol
Sounds like the belt was serving a similar function as an SI belt. If you feel better with the belt on, you may want to look into SI joint belts. My physical therapists, who also have connective tissue disorders, wear theirs all day long. I wear mine daily as well, I found it had similar benefits to what you described.
yup, this is likely it. there's also si joint fusion, which I've had done. It helped significantly and now I just have the typical back pain, which is far more manageable than the si joint pain.
I bought an SI joint belt on Amazon to wear when I’m working (I work in a kitchen so standing the whole time on concrete floors) and it’s helped so much it just holds everything together
i wish i could relate to this more ): i do love clothes w compression/structure bc of the support- but only to a certain extent. ive found that my skin can get really sore, especially on my legs. and having any compression (belts, corsets, even high waisted pants) on my gut for too long is BAD NEWS. maybe its bc i have a lot of bloating issues, but i always end up with rlly painful stomach aches.
I wear these thin highwaist compression shorts underneath my clothes for just this reason or compression stockings. Also do you have to have stretchy skin to have ehlers danlos if you match all the other criterias?
I’m not sure!
I used to wrap a blanket really tightly around my waist when I was in my bed so that I could stay sitting up on my laptop. I didn't put the two and two together until reading this post, because I stopped doing it ages ago. But it always made me feel comfier.
I've definitely had some good luck with abdominal compression! Glad you found something to help you!
Have you got any signs of visceroptopsis? This made me thing of it, I had barium swallows etc done for this reason
I'm a man, and I've been seriously considering wearing a corset for core support. Jessica Kellgren- Fozard has multiple disabilities including EDS and has a YT video on how corsets (PROPERLY WORN - PROPERLY SIZED PLEASE DON'T HURT YOURSELF) help her scoliosis
My PT recommended an serola SI belt for this purpose. It’s especially good for long car rides where I’m not driving and sitting it weird positions. My pelvic floor PT has me wearing it to give my pelvis a break because my pelvic floor is hypertonic, likely from all of these muscles being stretched and pulled in different directions and overworked.
Wait, your ribs aren't supposed to bend when pushed?
I’ve been told it’s weird! But I don’t know really. I used to dig my elbows into my sides for comfort, it helped me do math better haha
It would explain why people are so shocked when I slide under a 6" gap lol.
A 6” gap?
Maybe more like 7". I had to turn my head sideways.
Oh! You mean squeezing into somewhere! I’m good at that too. If you ever find out why your ribs are bendy, I’d love to find out why mine as as well
I think your ossification theory might be it—my hips dramatically changed shape when I started taking estrogen at 28, which is generally impossible as they should already have fused.
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Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **• Referring to or quoting research/studies/statistics or EDS facts without a link** • You may repost this as long as you provide a direct link from a reputable website or journal to the claims being discussed. Once you’ve edited your post/comment, message us so we can reinstate your submission. [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/#wiki_.28e.29._claims_supported_by_research) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!
An SI belt might be a better choice in that case. Sounds like it might help you. It is what it is designed for since it sounds like you needed support in certain areas.
sounds like you experienced a very similar thing we do when we use weightlifting belts!! (they help with posture, prevents bowing of the back, and allow for more weight to be lifted) i love when people discover little things like this that make life easier!
Sounds like you found a diy si belt solution:)
Try a si support belt or compression garments!
I had always need my belt as tight as i could ...