She’s just like me fr

Excuse the stains. She’s been thru the wringer with me. Ears/legs are attached so you can pull/slide to adjust. I tie her around my neck to rest on my back for support. Whenever I try to explain to loved ones how EDS feels like when the symptoms are often unexplainable I just let them play around with her & they’re like “fwark that makes sense”

So i don't feel like i need a cane but I'm at the point where I'm about to order a shower stool because my fatigue is so bad. I don't know if a cane would be helpful for me to get around because I don't have the most pain (my brain has literally shut off most basic pain receptors because I've dealt with pain for so long plus autism). Would it be worth it for me to try a cane just to help when I'm feeling extra fatigued?

Not sure if career/school is the right flare, but u suppose it is about a career. Anyways, I'm an actor, and I was wondering if anyone else here with hypermobile eds are actors and have tips on how to fake fall properly on stage without dislocating constantly? Bruises are expected, lol.

You can post about whatever you want during Off-Topic Saturday! All other rules are still in place during this day.

• Off-topic posts can only be posted on Saturday as their own individual post.
• Off-topic posts must be posted between 12:00 AM and 11:59 PM Eastern Time.
• Off-Topic posts must use the “Off-Topic Saturday” flair.
• Topics or pictures that could be triggering need to have a Trigger Warning in the title and must be spoilered.

Some ideas for posting:

Your favorite pet, relationship advice, new recipe for a fantastic dish you made, your most recently finished crochet project, or your enormous collection of PlayStation games.

--

Whatever you want to post about, do it today!

Posts regarding EDS are also allowed during Off-Topic Saturday.

Hello, first time poster here! I’m hypermobile in my back, arms, shoulders, but very tight hips/knees. My knees are always locked (sublexed I think is the term, correct me if I’m wrong), so the back of my knees are verrryyyy tight.

I’ve been wanting to get into the gym to for strengthening. I go to 1x1 Pilates who is a physical therapist of 20+ years, she works with several EDS clients and we mostly work on stabilizing my hips/core. Basically just wondering if anyone has any tips on getting into the gym/weigh lifting with this condition. Any precautions? Resources? Risks? Tips for warming up? Posture?

Anything would help, thank you so much!

Does anyone else have weak veins because of HSD? i didn’t know it could affect the veins, i thought it was only a joint issue!

this sort of speaks for itself. I wondered if there were others who have always found it a nuisance to ever get posture 'right'. I have sort of slumped-over looking shoulders (the bone/joint on each shoulder seems to be able sit further forwards than they should when my arms are at certain angles too), my back can look a little slouchy (and correcting this by sitting up can be pretty painful quite quickly! so I am quick to give up ahha), my neck's natural resting angle has a slight ostrich-y posture to it.

I don't mind looking a little wonky! was mainly interested to see if anyone had helpful fixes or even insight to whether this contributes to/is caused by hEDS (I wouldn't be surprised if it did!). ache-wise, I'd say I probably don't help myself with how my posture is!!

I see a lot of young people posting about being insecure in using their mobility aids and wanting something less medical and more in line with their own style. I wanted to make a post with a couple of hints I've picked up that are a lot cheaper than a Neo Walk (though they're beautiful).

So without further ado here's some pretty basic cost effective ways to have a cane that feels like an extension of yourself and not a medical accessory.

1. It needs to be your colour!

If you spend your day dressed in soft pastels a black cane is going to be a very stark contrast with your outfit and vice versa. If you're just now in the process of purchasing something you can absolutely go ahead and purchase something in a color you love. Otherwise - washi tape! Its something that's relatively inexpensive that you'd be able to change whenever the mood struck you. If you're a little more handy than myself I've heard others recommend to take apart the cane and paint it in the way you'd paint a bike.

2. It needs to be accessible to you during your day.

I had the hardest time with balancing when to use versus when not to use my cane. On a good day I often want to push myself to not decondition myself - then halfway through the Costco trip I'm struggling to stay upright. My solution? An extremely long lanyard that allows me to wear my cane like a cross body bag. It helps that my cane is is foldable so it doesn't hang too low.

3. Add some flare!

An easy way to add that flare is a key chain hanging off the cane strap! It's easy to get something cheap and unique to you. Are you a sanrio girlie? Get a Hello Kitty dangle. A plant dad? A succulent key chain. Are you a little more alternative? Maybe consider breaking out the hot glue gun and putting on some spikes.

Right now I'm also looking into replacing the cane handle for something a little more colourful as well as the Velcro strap that keeps it together when collapsed. But as of now - my cane and it's decorations are less than $50. (Photo in comments.)

Hi all,

I got an MRI of my spine last week and they found a 4.9cm lesion that wasn’t there 5 months ago. I am having a hard time getting authorization from my insurance to get an abdominal MRI and my back specialist is so on top of things it is starting to freak me out. I was diagnosed with non-alcoholic fatty liver disease a few months ago.

Has anyone experienced anything similar? I’m getting very overwhelmed

Has anybody used athletic tape, in lieu of braces? And if so, are there any good resources of where to learn what to tape and what direction? Specifically looking for shoulder and hip support.

I was previously 330ish lbs. I’m now 160lbs, I still have a pretty large chest. And they’re rather heavy, causing neck and back pain. Those of you who had breast reductions, how was your healing? I had a previous ACL repair and the scar looks like the “cigarette paper scars”. Im pretty nervous considering a reduction especially after my knee. Also had a horrible reaction to the strips/tape they used after. Also not “officially diagnosed”. Rheumatology is the only doc who doesn’t think I have EDS…

Hi,

I previously used Invitae to get testing done… I was able to get it without my doctor ordering it. One of their doctors approved the test based on some questions I answered and it was super smooth and I paid out of pocket. Now that they were bought by labcorp, I see that there is no longer the ability for patients to order testing directly. So are folks finding anyway to do this? I did whole genome sequencing and it took forever and cost a fortune and I found it pretty useless overall. Invitae was great but now basically not for the public it seems. Thanks for any tips.

Basically the title. I’ve been trying to avoid pushing into my end ranges of motion at the advice of my pt, but when I don’t I get so stiff and sore after a few days that I can’t resist stretching as far as I can just to feel everything crack like a glowstick. Anyone else feel this way?

Lately I've been having ezcema flare-ups, which led me to wonder how/why do some of us get Ezcema/Dry Skin (when we also have soft and velvety skin)? Surely that's a contradiction, as dry skin wouldn't be soft or velvety?

I've been having on and off mild ezcema flare-ups all my life. Lately it's been alot more frequent. Luckily mine are just itchy red patches/spots and mild skin cracking. But at the same time I've also gotten so many comments on how smooth/soft my skin is. So when I tell people I also have dry skin and ezcema they can be confused lol.

Does anyone here know(or have a rough idea) how/why some of us end up with ezcema despite having soft, smooth and velvety skin? Factual (links) or Anecdotal.

just got prescribed motegeity for gastroparisis associated with hEDS. just looking for general experiences taking it. thanks!

I have been experiencing gi issues on and off but they recently changed and got sm worse, and I’m curious what were your first symptoms, severity, anything x Context: I am seeing a dr, about it soon and am js curious

Has anyone tried going vegan to see if it helped? My MCASis triggered by eggs and nicotine, sometimes it is triggered by milk and chicken. While I react to other stuff too I am considering just going vegan because I react to so many meat and dairy products. Has anyone tried this? To be clear I probably wouldn’t be a strict vegan but still something I am thinking about.

(I really don’t care to hear recruitment speeches about veganism I am solely asking about symptom management.)

I got diagnosed with hEDS recently and I have always shown symptoms of POTS (extreme heat intolerance, dizziness, fast heart rate) but they’ve been manageable. since i got diagnosed with EDS, my POTS symptoms seemed to have absolutely taken a nosedive. the fatigue and brain fog is near debilitating and now EVERY TIME i stand up my hr jumps 30-50bpm and gets to like 170 in the shower. i can’t even do my physical therapy right bc my hr gets so high so quickly 😅 has anyone else been hit with POTS like a truck in their twenties or was it gradual/always there? i’m starting to think it’s all in my head since the more severe symptoms didn’t start until my recent EDS diagnosis a month ago

EDIT: it might be worthy to mention that 2024 was literally the most stressful and emotional year of my life so that may be a contributing factor

I had a breast augmentation done a year ago and noticed that my implants move quite a bit inside my breast. Apparently that’s not normal. Does anyone else have this issue with their implants? Any studies done on this?

I woke up to the screeching of my apartment’s steam radiators, and when I attempted to get out of bed to check if someone had left the heat on all night because it was boiling my tiny room with only one window, I was so dizzy that I fell over.

I am assuming it is the same sort of issue processing Steamy extreme heat that I have in the shower. So that’s fun. Exactly how I wanted to start my morning. Now I am sitting in front of my open window, playing with handfuls of snow from the sill, attempting to get my body back down to a normal range.

Anybody else run into things like this with their housemates where they do something that seems extremely normal, but that You’re zebra body hates?

The double purple seat cushion is the best seat cushion I have ever tried y'all. It keeps you cool and immediately forms to your body. It is so comfortable and fits in my wheelchair perfectly. I can tell this will especially be great in the summer time because it gets really hot sitting in my wheelchair.

I was able to try this out at a furniture place before buying it.

I was having this conversation with my gf the other night. I was telling her how I found it odd how quickly my doctor was able to get through the Beighton Scale with me. I didn’t really think my elbows or knees were noticeably hyper extended. However, after seeing my gf extend out her arms and legs I realized how much further mine went. I thought my arms and legs were what normal looked like. Suddenly, comments I got as a kid from coaches in cheer and twirling about keeping limbs straight made sense.

You know how little kids and super flexible people can sit on the back of their heels?

I need that for a chair. Not more support forward. I need to be able to sit back down into my seat if that makes sense. Like really far back. Like if you were to sit on the edge of a bed looking like you're almost falling off it.

I think the closest thing would be those stretchy web like chairs common for teen and college dorm rooms. But they don't support well.

As a kid I was constantly sitting off the edge of things backwards. Tipping my chair backwards. It makes sense now. It felt better on my joints.

I realize I sit so far forward normally because it provides more comfy joint pressure. It's basically the same thing I think, just centered different.

No wonder I hate working in my office. There's literally nowhere I can sit or stand that doesn't ache badly. There's nothing that exists to accommodate what I need in an office that I have found.

I love working from home because I can sit in odd positions on my bed

But the most comfortable place for me is driving my car. (I have a 5th gen Rav 4) There's something about the cushion of the seat and feel and maybe slight vibration of the car. I rarely have pain there. However I also get exhausted driving and gas is expensive so that sucks.

She is looking for a reliable kt brand that won't fail on her

i would love it if as little people could notice me at all. i experience a lot of pain and discomfort in parts of my body that are below my heart for longer than a minute or two because of what i’m assuming is shitty EDS circulation. i’m a lifeguard and i find it excruciating to stand, especially still, and even more so for extended time periods. if i don’t recirculate my blood enough i start getting extra fatigued and experience pre-syncopal symptoms that make it impossible to stay upright. i stretch while i scan the pool and i never take my eyes off the water while doing it. for the past year i have also been trying to fix my fucked up knees (from dislocating them every few months my whole childhood) and hips through a newish hobby of ballet, so sometimes i do heel raises or my feet move through some basic positions while i guard too.

my coworker just asked if i could stop stretching while i lifeguard because it looks like i’m trying to get attention. i move all parts of my body but i bet he said that right after i was doing hamstring stretches because he found it sexual. i’m not trying to sexualize myself or my body i’m just trying to be in less pain. i tried to tell him how much it hurts to stay still and not stretch but he just held his ground. i don’t know what to do because i really can’t work through the pain and symptoms when they are bad.

i was guarding alone so it’s not like i was trying to distract another guard and i really don’t have a better way to address my pain. please somebody suggest another solution

I’m a bit confused. I’m in the process of diagnosis. Two of my doctors suspected EDS since I seem to have every symptom in the book for hEDS. But my GeneDx report included two heterozygous variants in the TNXB gene. Isn’t that only associated with clEDS? Not sure where to turn now. Thanks for any input.

I have never been able to burp. It’s caused all kinds of symptoms like bloating and stomach pain, with these weird frog gurgles after eating. I was diagnosed with RCPD (retrograde cricopharyngeus dysfunction) which is literally the inability to burp. I got it treated with Botox and my stomach symptoms are completely gone now.

Has anyone else been diagnosed with this or is unable to burp? I didn’t know if it could be related to EDS, it’s still a relatively new condition.

I have to laugh at the fact that I am more than 10 years into my medical journey and no doctor or specialist has been able to help me.

It takes an average of 10-12 years to get an Ehler’s Danlos diagnosis

And it takes an average of 11-12 years to become a doctor.

I’ve been misdiagnosed, fed pills, trialed off label drugs, sent to a rehabilitation program, constantly at the hospital, struggled through a failed diagnostic surgery, and pushed to absolute breaking point multiple times by people who just won’t listen.

I’m fed up with being silenced and gaslit by medical professionals.

I cannot believe the negligence of the health system we live in.

If only we could receive the care we need when we so desperately ask for help.

I (19F) started experiencing chronic pain in my back, hips, knees, and ankles at 17. I went to my dr at 18 and basically checked everything off the Beighton Score. He sent me home with a referral to pt and a link to the hEDS diagnostic criteria. A lot of it was applicable to me, so last week I revisited the doctor to hopefully get that diagnostic process started. He said he believes I more than likely have hEDS but wouldn’t want to refer me to genetics because it’s not an important diagnosis. I left with a POTS diagnosis (without any POTS testing btw, so idek how that works) and a hypermobility syndrome diagnosis. He explained it as an umbrella term that encompasses hEDS and basically is hEDS but without going to genetics. However, I learned today that you don’t get diagnosed with hEDS through genetic testing.

So is hEDS an important thing to get specifically diagnosed or does my hypermobility syndrome diagnosis suffice?

it's the most comfortable position for me to curl up on the sofa, or perch on a bed or even sit in the floor, while sitting on one leg, but I have to be so careful because nearly every time I do this (in forgetting NOT to do it), I end up pushing some part of my knee out the socket, and I jump right back up again to get it in place again! it's very painful but thankfully it just pops back into place after a moment of out-stretching my leg again, the joint/tissue in that area can feel sort of bruisy and 'stretched', a bit loose afterwards if that makes sense. it can even happen laying my leg down the 'wrong' angle without even sitting on it, I'm more used to it now but it always gives me a fright!

I don't know if that whole thing of it feeling like it pops in and out of place painfully - counts as a 'subluxation' because it'll only be a temporary dislocation if it counts as one.

it's frustrating because it's SOOOO comfy to curl up like that, but I just know my knee can't take the pressure! (it could be worse - I'll live!) I also wondered if anyone related to compromising with the classic 'fetal position'.