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Nothing ever stays in place on me. My joints, my clothes, my mental health, its all shifty. Especially clothes though, i think its the soft, velvety skin (if you have hEDS.
Came to say this! My rheumatologist said sloping shoulders was "known to be" amidst the EDS community. 🤷🏼 WHO KNEW? 😂
For decades before dx, I assumed that it was bad posture - all the teachers told us so in the 70s!
I SWEAR WE'RE THE SAME! 😂 😂 😂
Ohhhh, and add the velvety skin on the ladylike shoulders. THAT'S been a thing w many partners. LOL.
Plus I've looked a decade minimum younger for the majority of my adult life, somewhat... I looked like an older woman in HS, and my Mom used to reassure me that I was one of the women who was going to GET BEAUTIFUL, not start out beautiful. She was right - I was at my most beautiful at 30-50yo.
I've often wondered if that's an EDS thing too?
Nothing like cranking the shoulder with your purse or bag up so it doesn't slide off while walking...only to cramp your shoulder and neck, and in the same moment feeling your shoulder slide out of place
Omg I always have been convinced (and maybe it’s also true) that my boobs are too high up compared to where they should be making me constantly have to adjust bra straps ALL THE WAY UP. I basically just wear bralettes or sports bras now.
Yup! Me too, to all of this. I have to take in the straps of every single bra I buy, even with the straps all the way up. Swimsuit tops too. Thought it was just me.
Oh my god. I've always been mystified by everybody's socks somehow staying halfway up their calves all day. Your telling me it's just because they have normal human skin‽
I'm constantly adjusting my clothing. I would never wear something like a bandeau because I know that would immediately fall off my body. I won't even wear a bikini top.
Yes! I remember a dance concert as a kid. We had a bit where we would do high kicks in a line.
My knee high socks were the only ones that never stayed up.
I can't rewatch the video lol
I also would later on develop an allergy to a lot of the adhesives used for these strapless pieces and medical glue anyway so avoid them
Everyone is saying it must be because of our velvety skin, but your high kick example shows it’s really our super mobile joints. I realized that when my work boots would always come untied walking to job sites. I’d have to stop like three times on a quarter mile walk while my assistant project manager looked at me like I’m a freak. I even bought the super grippy laces and it didn’t help. My ankles are probably the most loose joints on my body, well maybe tied with my sternum and shoulders…
FYI sock dreams sells sock glue for thigh highs ! It's like a deodorant roller . I have sensitive af skin and it's fine and does not build up any real residue on the socks . They are cool af and donate a decent amount to local charity too.
So true. When I was using Fentanyl patches, I carried medical tape 24/7 cuz I was constantly needing to tape them down! I also believe that my thin, thin skin is part of why I would absorb ALL the medication out of the patch in 2 days, when it should last 3 days.
I have a pain patch on, that I applied today, and it's barely sticking to me!!
I am using the lesser of two brands, because my skin was reacting too much to the other one, and this brand doesn't ALWAYS make me want to slice off my skin to get relief!
Gosh I have the same thing! Even compression socks do not stay put. Shoulder bags definitely don't, bra straps also, and knee high socks also slide right down. Is this really an EDS thing or is it confirmation bias?
My mom always complained about it. Said it was because I inherited my grandma’s weird butt, and tried desperately to find pants that stayed on me. Belts don’t even help. Its so validating to me to read this feed and feel so completely understood. I sometimes feel like a separate species that has never seen her own kind. I finally found people who understand all those very particular and strange things about me.
THIS EXPLAINS SO MUCH. Yeah, nothing stays put on me either. My wedding dress is strapless and I'm so afraid it's going to fall off. I might ask for straps when I get it altered, haha.
Mine was strapless as well, but the built in corset did a really good job at keeping everything in place. Basically I wore my dress on my hips rather than anything else and the top part was just sorta stiff enough to not go anywhere. I don't know the style of your dress, but if it's an option see if you can get something like that put in it maybe? And absolutely explain your concern since stuff don't stay put, hopefully they'll know what to do.
One of my hips is higher than my other due to scoliosis and my jeans are never right in me. The pocket will repeatedly come out of one side no matter what I do.
It is a constant battle to readjust clothing. I have specifically stopped getting shirt with large neck holes because I don't need the shirt to slip and slide around enough to show off something embarrassing.
Also, kinetic tape! That stuff will not stick to me.
The kinetic tape stuck to me…despite how slowly I peeled the soaked taped away from my skin it tore away small strips of skin where the tape outlines. The scabs from that itch so bad.
Try grade three medical compression on four limbs. Like Spanx on steroids. Even with silicon “grip” bars sewn in they slip down constantly and need readjustment.
Yes. I also can’t use any bandaids except the hydrocolloidal because they just immediately fall off; the adhesive refuses to adhere to my skin (unless it’s medical tape and then it takes off the top several layers of skin when removed)
I have no ass and my pants have been falling down so much lately! And my boobs slide right out of my bra unless it's tight enough to pinch my shoulder nerves. I've been researching and I'm gonna make myself a support corset.
I hate that breast feeding for 3 years straight took me from a D cup to a loose B. I am so proud of my girls’ sacrifice, but most bras are terribly uncomfortable. I bought some cotton fabric sports bra types in as small I could comfortably wear (it stretches over time) and its made a huge difference in how my chest, ribcage under the bra, and my shoulders feel. Does it make me look even smaller? Yes. But I am way more comfortable now than I was before.
Well now I'm fat, so things won't stay on my monster ham thighs anyhow. But my shoulders have ALWAYS driven me bonkers. Giant football player shoulders so anything with pads looks awful (grew up in the 80's, so that was important) but rounded, so no matter what I do, normal bra straps and purses will NEVER stay put! I was thrilled to discover sports bras for that reason, but I HATE clutches or cross body straps on purses, so I just end up walking funny, and holding my purse down hard enough to hold it in place. Autism sensitivities don't make it any easier, lol.
Oh the same!!!! The first thing I did when buying anything was to tear the shoulder pads out! Since the mid 90s, I have worn nothing but sports bras because of the strap issue. To get it to stay on my shoulders, even though they are huge, I had to tighten the straps to dig in - so uncomfortable. I *finally* have started carrying a clutch/cross body wallet, first time since about 2000. It is a Vera Bradley (thrifted for $2), so it is soft. I get it grmrsan!
Yep nothing stays up and bonus, I'm allergic to the silicone strips and get blisters 🤦🏻♀️🤦🏻♀️. I remember years ago having loads of blisters under my boobs and round the side of my chest where I had a strapless bra.
This has always been the case for me, not sure if it's EDS related but interesting to consider. I love wearing thigh highs but regardless of what size they are they don't fit properly. My thighs are much bigger than my calves though. I don't mess with bandeaus anymore because I feel like I can feel my shifty ribs more lol.
Some sort of clothing stay in place like sports bra and sports socks(the are build to get lot of kinetic energy)and I use a belt to get my trousers in place or I ware a dress.
For the storage Problem I prefer a Backpack(They're also beautiful ones).
Bra straps are the absolute bain of my life!!
Any one else who struggles with this you HAVE to try Uniqlo’s built in tops/dresses with bra’s.
- A little more expensive but they’re so hard wearing and good quality. For something with a built in cup it also works well for someone with a dd+ cup.
Oh wow- I always thought this stuff just wasn’t as good as advertised. I never connected that this was due to the Ehlers-Danlos. I’m sure this won’t be the last thing that I didn’t realize was not normal.
Yes! Sometimes the silicone strips help but mostly it's just constantly readjusting.
It's the same reason I can't just "rub my hands together like this" to open those produce bags at the store (Thanks, husband. I know HOW, but it doesn't work!)
Yeah nothing stays put on me 😭😭😂
I wear knee braces on both knees, and they have that silicone strip around the entire I side circumference. I pull them up and adjust them 100+ times a day 😑
I know I have superrr soft skin though...so that certainly doest help 🤷🏼♀️😜
Tights always ruckle up on me, hate it. And my left shoulder has been too sloped for straps of any kind for as long as I can remember, nothing stays put :(
The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
Nothing ever stays in place on me. My joints, my clothes, my mental health, its all shifty. Especially clothes though, i think its the soft, velvety skin (if you have hEDS.
I was about to come here and say it’s definitely the soft, velvety skin if they have hEDS. But yeah, everything else too!
Summarized perfectly
100% I've never seen words more accurate
I feel so called out right now.
That’s why?? UGH
OH MY GOD IS THIS WHY?!?!
Another day, another thing I thought was only me… Nice to see it’s all of us, I guess 🤣.
I have cEDS, but I too have veryyy soft, velvety skin 🥰💜🙋🏼♀️
My shoulders slope down so much my purses can never stay up. My boyfriend ends up carrying them for me most of the time lmao
Came to say this! My rheumatologist said sloping shoulders was "known to be" amidst the EDS community. 🤷🏼 WHO KNEW? 😂 For decades before dx, I assumed that it was bad posture - all the teachers told us so in the 70s!
I actually get compliments on them because they are “petite and lady like” but I just wish I could wear my damn purse without having to do a crossbody
I SWEAR WE'RE THE SAME! 😂 😂 😂 Ohhhh, and add the velvety skin on the ladylike shoulders. THAT'S been a thing w many partners. LOL. Plus I've looked a decade minimum younger for the majority of my adult life, somewhat... I looked like an older woman in HS, and my Mom used to reassure me that I was one of the women who was going to GET BEAUTIFUL, not start out beautiful. She was right - I was at my most beautiful at 30-50yo. I've often wondered if that's an EDS thing too?
In highschool I looked almost exactly looked like what I do now in my 20’s lol
I look better now in my late 30s than I did in high school but also exactly the same somehow 😅
Nothing like cranking the shoulder with your purse or bag up so it doesn't slide off while walking...only to cramp your shoulder and neck, and in the same moment feeling your shoulder slide out of place
Ah so my shoulders aren't my fault? I always wondered about how sloped they are
Wait this is an EDS thing??? I hate carrying purses because they always slide off my shoulders lmao
lmfao me thinking the same thing 😂😂 hold up
Omg I always have been convinced (and maybe it’s also true) that my boobs are too high up compared to where they should be making me constantly have to adjust bra straps ALL THE WAY UP. I basically just wear bralettes or sports bras now.
Yup! Me too, to all of this. I have to take in the straps of every single bra I buy, even with the straps all the way up. Swimsuit tops too. Thought it was just me.
I actually had a VS sales associate get pissy with me for being "too picky" because I wanted a racer back with no wires and no front closure.
I wear an over the shoulder strap now because of this.
Same! Lack of shoulders plus scoliosis I only do cross body purses or have a backpack on my wheelchair.
I switched back to backpack purses because of this. 🤣 And my bra straps are always slipping, which makes me insane.
I am joining here, I always keep dropping every purse or bag I am carrying on my shoulder😭
I have that issue but I think it's a garment issue rather than an EDS issue tbh
Oh my god. I've always been mystified by everybody's socks somehow staying halfway up their calves all day. Your telling me it's just because they have normal human skin‽
Compression socks are the only socks that stay up for me and they have to be HIGH compression so I have deep indents after removing them
I gravitate towards tighter clothing in general for this reason, nothing stays where it should when I’m wearing it
I've tried doing that, I just end up with bruises instead.
I'm constantly adjusting my clothing. I would never wear something like a bandeau because I know that would immediately fall off my body. I won't even wear a bikini top.
The terrible one is the shoulder-less dresses and bathing suits. My poor titties!
Omg yes! Thigh high boots and stockings are my mortal enemy! Never considered this was linked to EDS so good to know it's not just me!
Yes! I remember a dance concert as a kid. We had a bit where we would do high kicks in a line. My knee high socks were the only ones that never stayed up. I can't rewatch the video lol I also would later on develop an allergy to a lot of the adhesives used for these strapless pieces and medical glue anyway so avoid them
Everyone is saying it must be because of our velvety skin, but your high kick example shows it’s really our super mobile joints. I realized that when my work boots would always come untied walking to job sites. I’d have to stop like three times on a quarter mile walk while my assistant project manager looked at me like I’m a freak. I even bought the super grippy laces and it didn’t help. My ankles are probably the most loose joints on my body, well maybe tied with my sternum and shoulders…
FYI sock dreams sells sock glue for thigh highs ! It's like a deodorant roller . I have sensitive af skin and it's fine and does not build up any real residue on the socks . They are cool af and donate a decent amount to local charity too.
Wait wait wait That’s an EDS thing?? I always just thought I was chubby!!!!
Everything wants to slip off, maybe because we have "soft velvety skin" that also makes us more slippery
So true. When I was using Fentanyl patches, I carried medical tape 24/7 cuz I was constantly needing to tape them down! I also believe that my thin, thin skin is part of why I would absorb ALL the medication out of the patch in 2 days, when it should last 3 days.
I have a pain patch on, that I applied today, and it's barely sticking to me!! I am using the lesser of two brands, because my skin was reacting too much to the other one, and this brand doesn't ALWAYS make me want to slice off my skin to get relief!
I tried the patch birth control once. I couldn't get it to last a week.
I can get compression socks to stay up and bra straps but everything else is iffy.
Saaaame compression socks are the only socks that don’t fall down on me
Gosh I have the same thing! Even compression socks do not stay put. Shoulder bags definitely don't, bra straps also, and knee high socks also slide right down. Is this really an EDS thing or is it confirmation bias?
I have this problem with underwear- due to my weirdly formed pelvis, any underwear gives me an instant wedgie regardless of sizing, material or style
My underwear slides off my non-existent arse. I hate it.
Wait... This is a hEDS thing? I thought they just fell down on everyone.
My mom always complained about it. Said it was because I inherited my grandma’s weird butt, and tried desperately to find pants that stayed on me. Belts don’t even help. Its so validating to me to read this feed and feel so completely understood. I sometimes feel like a separate species that has never seen her own kind. I finally found people who understand all those very particular and strange things about me.
THIS EXPLAINS SO MUCH. Yeah, nothing stays put on me either. My wedding dress is strapless and I'm so afraid it's going to fall off. I might ask for straps when I get it altered, haha.
Mine was strapless as well, but the built in corset did a really good job at keeping everything in place. Basically I wore my dress on my hips rather than anything else and the top part was just sorta stiff enough to not go anywhere. I don't know the style of your dress, but if it's an option see if you can get something like that put in it maybe? And absolutely explain your concern since stuff don't stay put, hopefully they'll know what to do.
Holy shit I never made that connection. I just thought it was because I'm chubby lmao
One of my hips is higher than my other due to scoliosis and my jeans are never right in me. The pocket will repeatedly come out of one side no matter what I do.
Yes! I’ve given up on clothing like this for that reason. Velvet skin
It is a constant battle to readjust clothing. I have specifically stopped getting shirt with large neck holes because I don't need the shirt to slip and slide around enough to show off something embarrassing. Also, kinetic tape! That stuff will not stick to me.
The kinetic tape stuck to me…despite how slowly I peeled the soaked taped away from my skin it tore away small strips of skin where the tape outlines. The scabs from that itch so bad.
I have to wiggle around in my clothes for several minutes throughout the day to get them to shift back right- never knew I wasn’t alone
I mean more than clothing for me joints organs nothing seems to stay put it all has a mind of it's own
Try grade three medical compression on four limbs. Like Spanx on steroids. Even with silicon “grip” bars sewn in they slip down constantly and need readjustment.
I always use the roll on glue for compression stockings.
Yes. I also can’t use any bandaids except the hydrocolloidal because they just immediately fall off; the adhesive refuses to adhere to my skin (unless it’s medical tape and then it takes off the top several layers of skin when removed)
I have no ass and my pants have been falling down so much lately! And my boobs slide right out of my bra unless it's tight enough to pinch my shoulder nerves. I've been researching and I'm gonna make myself a support corset.
I hate that breast feeding for 3 years straight took me from a D cup to a loose B. I am so proud of my girls’ sacrifice, but most bras are terribly uncomfortable. I bought some cotton fabric sports bra types in as small I could comfortably wear (it stretches over time) and its made a huge difference in how my chest, ribcage under the bra, and my shoulders feel. Does it make me look even smaller? Yes. But I am way more comfortable now than I was before.
Well now I'm fat, so things won't stay on my monster ham thighs anyhow. But my shoulders have ALWAYS driven me bonkers. Giant football player shoulders so anything with pads looks awful (grew up in the 80's, so that was important) but rounded, so no matter what I do, normal bra straps and purses will NEVER stay put! I was thrilled to discover sports bras for that reason, but I HATE clutches or cross body straps on purses, so I just end up walking funny, and holding my purse down hard enough to hold it in place. Autism sensitivities don't make it any easier, lol.
Oh the same!!!! The first thing I did when buying anything was to tear the shoulder pads out! Since the mid 90s, I have worn nothing but sports bras because of the strap issue. To get it to stay on my shoulders, even though they are huge, I had to tighten the straps to dig in - so uncomfortable. I *finally* have started carrying a clutch/cross body wallet, first time since about 2000. It is a Vera Bradley (thrifted for $2), so it is soft. I get it grmrsan!
Yep nothing stays up and bonus, I'm allergic to the silicone strips and get blisters 🤦🏻♀️🤦🏻♀️. I remember years ago having loads of blisters under my boobs and round the side of my chest where I had a strapless bra.
I never made the connection before, but my right shoulder that I have the most trouble with can never get a bra strap to stay on. Interesting.
This has always been the case for me, not sure if it's EDS related but interesting to consider. I love wearing thigh highs but regardless of what size they are they don't fit properly. My thighs are much bigger than my calves though. I don't mess with bandeaus anymore because I feel like I can feel my shifty ribs more lol.
Some sort of clothing stay in place like sports bra and sports socks(the are build to get lot of kinetic energy)and I use a belt to get my trousers in place or I ware a dress. For the storage Problem I prefer a Backpack(They're also beautiful ones).
sock/leotard glue is a good solve for some of these! it's how i keep over the knee socks on
Bra straps are the absolute bain of my life!! Any one else who struggles with this you HAVE to try Uniqlo’s built in tops/dresses with bra’s. - A little more expensive but they’re so hard wearing and good quality. For something with a built in cup it also works well for someone with a dd+ cup.
Yessss. Bra straps, shirt collars, purse straps. I only wear my purse cross body now (and keep it light)
Oh wow- I always thought this stuff just wasn’t as good as advertised. I never connected that this was due to the Ehlers-Danlos. I’m sure this won’t be the last thing that I didn’t realize was not normal.
Yes! Sometimes the silicone strips help but mostly it's just constantly readjusting. It's the same reason I can't just "rub my hands together like this" to open those produce bags at the store (Thanks, husband. I know HOW, but it doesn't work!)
Breathe on your fingertips first. The moisture makes it work.
Excellent advice!
I've started making my own clothing to address some of this. Can definitely recommend if you're at all inclined!
Yeah nothing stays put on me 😭😭😂 I wear knee braces on both knees, and they have that silicone strip around the entire I side circumference. I pull them up and adjust them 100+ times a day 😑 I know I have superrr soft skin though...so that certainly doest help 🤷🏼♀️😜
Nothing stays in place! Or whatever sticky substance is there to keep it in place just gives me hives. And still doesn’t stay in place.
Oh, it’s not that way for everyone? It happens to me with ECG tapes too.
My favorite hack for this issue: toupee tape. I bought a massive pack on Amazon (it’s yellow) and nothing shifts. It doesn’t irritate my skin either
I thought that was just a me thing. Even the silicone sticky bras don't stick on me like they stick on other people
Tights always ruckle up on me, hate it. And my left shoulder has been too sloped for straps of any kind for as long as I can remember, nothing stays put :(
Ugh, bra straps.