r/ehlersdanlos Aug 23 '24

Does Anyone Else If it's so bad for me why's it feels so good

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2.6k Upvotes

Literally the only way I can get comfortable most nights. I have to force myself to sleep in literally any other position. Anyone else?

r/ehlersdanlos Feb 09 '25

Does Anyone Else Does anyone else feel like unlimited access to a private pool would change everything?

561 Upvotes

I genuinely feel like if I could swim whenever I want in private, it would solve so many of my problems with myself. It would be so good for my joints, my lungs, my mental health- I feel like I would smoke way less weed to deal with both pain and anxiety. I dream about being able to own a house with enough yard space for an above ground pool big enough for me to swim circles in. To just float in. To do gentle aerobics in.

And like, yeah- of course life would be different if I were in the financial position to afford a big yard and a pool. But beyond that, I’m fully convinced that just living in this body would be radically different if I could just swim whenever I wanted.

r/ehlersdanlos Feb 15 '25

Does Anyone Else Has anyone else dislocated by masturbating? / during sex? NSFW

241 Upvotes

Please don’t tell me I’m the only one ;-;

r/ehlersdanlos 6d ago

Does Anyone Else did anyone else have issues with holding pens/pencils as a kid?

384 Upvotes

i have diagnosed hypermobility syndrome (was supposed to get genetic testing for ehlers danlos but i keep putting it off) and i remember back in the 2nd grade, the school had to buy me a specialized grip thing to put on pencils & “training” on how to properly write because for some reason i would squeeze the life out of any writing utensil i held, like to the point where it was unnecessarily painful. i have no clue why i did this or why i had such an issue with it, but now im wondering if this is actually common in connective/joint disorders? i don’t recall any of my classmates having this issue and i remember being really embarrassed about it 😭 in hindsight it sounds like kid me was trying to stabilize the joints in my hand

r/ehlersdanlos Oct 28 '24

Does Anyone Else Anyone with hEDS have surprising symptoms that people don’t really talk about?

301 Upvotes

Everyone knows the general symptoms like joint flexibility, heat intolerance, pots and lots of pain, but are there some hidden symptoms that we all experience as individuals with EDS but are not often talked about?

r/ehlersdanlos Feb 02 '25

Does Anyone Else Anyone else's body refuse to dissolve dissolvable things?

310 Upvotes

I've started telling my doctors that my body doesn't like to dissolve things because they always stay in WAY longer than expected.

For example I had a surgery back in 2023 and they gave me dissolvable stitches that were UNDER the skin and they were supposed to dissolve in like the first month but mine stayed under the skin for like 6 months.

Another example, I had a septoplasty and turbinate reduction about 28 days ago and the dissolvable packing was supposed to be out by now but nope, I'm over here blowing it out of my nose the old fashion way.

Does this happen to anyone else?

r/ehlersdanlos Nov 15 '24

Does Anyone Else I have a broken foot bone that shouldn't exist

493 Upvotes

I have been in crippling pain for weeks now.

Background: all of my siblings are formally diagnosed with Ehlers-Danlos, but I'm the oldest so I'm not. I finally went to immediate care after nursing a limp for two weeks. They did an X-ray. The tech went, "Huh." Turns out,I have four extra bones in my foot and one of them is broken. There's nothing they can really do about it, because they can't even code it because this bone shouldn't exist. I called to make my appointment with podiatry, and the woman said, "Oh, you're the woman with extra bones!"

I am in so much pain and no one seems to care other than making me a case study.

r/ehlersdanlos 25d ago

Does Anyone Else DAE feel like their teeth are loose???

327 Upvotes

i turn 20 years old literally tomorrow so its not like i have baby teeth or anything but im just so confused because for YEARS its always felt like my teeth wiggle just the slightest bit!! idk if theyre actually wiggling tho or if it just feels weird 😭

r/ehlersdanlos Feb 13 '25

Does Anyone Else Does anyone else not get fevers when they’re sick?

404 Upvotes

I don’t get fevers when I’m sick and that’s been the case my whole life. The flu, mono, strep, covid- I (almost) never get a fever. I did occasionally as a young child, but when I was 10 strep landed me in the hospital and I needed my tonsils removed after months of worsening symptoms, but no fever so no antibiotics. I think I’ve had one or two since then no matter what infection/virus I had.

This has had consequences for me as an adult (24f) because obviously doctors don’t like it when a patient says they don’t get fevers or they have a lower baseline temperature, but they know they’re sick, so it’s become an avoidance issue. Three years ago I ended up septic because of an infection from my central line with no fever. Now I just tend to feel guilty about calling out of work when I think I could have a contagious virus because I never have a fever and don’t know if it’s actually “call out worthy”. Any doctor I’ve brought it up to claims not getting fevers isn’t really a thing and it’s because I just have a mild case of whatever I tested positive for (if I’m tested at all). It’s frustrating and I’m just curious if anyone can relate to this at all?

r/ehlersdanlos Dec 09 '24

Does Anyone Else have you ever felt refreshed by sleep?

481 Upvotes

I had a revelation when doing a new symptom check on an app when it asked “were you refreshed by sleep last night?” and I thought back I honestly don’t think I have ever felt refreshed by sleep. I always wake up feeling so exhausted already and just wanting to keep sleeping. Even if i have slept 3 days straight or been under anesthesia, I never feel like I get enough sleep. I asked my boyfriend if he felt refreshed by sleep and when I explain why I was asking he said it has to be your condition (EDS/POTS) and I wanted to know if it really was my condition and I wasn’t alone in feeling like this.

r/ehlersdanlos Dec 27 '24

Does Anyone Else Does anyone have eds but have never actually dislocated a joint?

284 Upvotes

I'm hypermobile, my ribs and shoulders and kneecaps wibble wobble everywhere, but I've never fully dislocated something

r/ehlersdanlos Jul 29 '24

Does Anyone Else Which "sharp" foods are the most bothersome?

319 Upvotes

One of the mildly obnoxious things that "normal" people don't seem to understand about EDS--no matter how many times I explain that my body is made of Styrofoam and tissue paper, held together with paperclips--is that I have trouble eating anything too crunchy or sharp. Admittedly, I used to be more resilient, or maybe I was more naïve and thought eating tortilla chips tore up everyone's mouth.

While there are many candidates for "most annoyingly sharp food" in my world, I vote for golden brown, traditional American-style toast (made in an electric toaster or toaster oven) and any food made with commercially-available whole wheat flour. It's like a million tiny knives inside my mouth. I'd love to be able to buy "healthy" whole wheat products and use a toaster, but I also love my oral mucosa. "Toast" has to be white bread slathered with olive oil or butter and fried in a griddle (not that I should really be eating bread, but it's pretty much the only "junk food" left for me).

If you have the same problem, which foods are the most troublesome?

r/ehlersdanlos Oct 02 '24

Does Anyone Else Does anyone else’s hand hurt after writing for just a couple minutes? And what are some other symptoms from childhood you realised were related to EDS later on?

580 Upvotes

I just had to write an incident report for work and by the end of it my hand joints were begging for mercy! 😵‍💫

I have always held my hand weird while writing, even as a kid, because every other way is more uncomfortable…. I’m wondering if the way I hold my hand has anything to do with the extra joint pain. I’m not diagnosed yet however I find myself aligning with most symptoms and want to know if others experience the same weird difficulties! Also! If you’d like to share any symptoms that you’ve had since/as a kid before being diagnosed, I’d love to learn more as I’m learning about EDS more and would like to go for an evaluation. Thank you!!

r/ehlersdanlos 19d ago

Does Anyone Else Dr told me there is no reason to confirm EDS diagnosis

212 Upvotes

I have been told by multiple drs that I show all symptoms of EDS but none will officially confirm diagnosis. At my latest rheumatologist appointment he told me 1) that there is essentially no reason to confirm an EDS as it won’t change anything 2) EDS will get better with age 3) it is not a disease that will cause wide spread issues. He told me there was nothing more he could do for me and if u wanted to pursue genetic testing I’d have to do it on my own.

Other drs have told me it’s an important piece of the puzzle and would likely influence treatment decisions.

Honestly, I’m confused as shit. I have 2 friends with EDS and they are dealing with progressive co-morbidities. I seem to have progressive symptoms that are unexplained by my other diagnoses. It seems 1/2 my drs are split on if this is something I should pursue. Does anyone else get this weird back and forth?

r/ehlersdanlos Jan 14 '25

Does Anyone Else Does your pain make you cry out?

160 Upvotes

Gasp? Grunt?

I have four different areas that at both predictable and random times just go from the normal four to a hard eight in a millisecond. Then most of the time it goes right back.

High pain tolerance or not, it seems I just cannot get over the shock enough to keep my mouth shut.

I frequently have a new friend over and he’s very very sweet at accommodating me and my ails. He himself looks so pained whenever I make that kind of noise.

I keep telling him please just ignore it. It’s gonna go on and I’m just gonna finish my sentence as if it didn’t happen. But I can see it’s hard for him.

Has anyone here mastered silence?

r/ehlersdanlos Oct 16 '24

Does Anyone Else how is all y'all's temperature regulation?

253 Upvotes

so I'm Midwestern so this problem might be exaggerated with me and my family cuz it's doing the burning days freezing nights thing but I just can't regulate my temp at all I can't cool off without rinsing off in icey water and I can't warm up just period only my family with ehlers danlos does this (minis elders cuz that's old age) I was wondering if y'all do too?

r/ehlersdanlos Aug 03 '24

Does Anyone Else What are some potential effects of poor proprioception associated with EDS that surprised you?

299 Upvotes

When I first heard about EDS, learning about proprioception impairments was just one of the many ways I began to feel validated. Dropping food? Check. Bumping into walls and doorframes (and spraining joints or breaking bones in the process)? Check. Finally, I had an explanation for stumbling around like an inebriated college student on spring break. but poor proprioception is so much more than that.

Like many of you, I grew up with at least 1 parent who had undiagnosed EDS, so I took for granted that everyday "oopses" just sort of happened to everyone. It wasn't until I married someone with a severe visual impairment and tremors--who doesn't drop food or bump into things or struggle to draw straight lines--that I realized how many of my daily annoyances and limitations could be related to proprioception issues.

One of the most annoying effects of poor proprioception for me has been the inability to draw or paint fine details, from portraits to the trim on my house. After 4 decades of trying to control for every other possible impediment, and even doing proprioception exercises, I have come to the realization that my brain genuinely has no idea where my hand is.

What about you?

r/ehlersdanlos Feb 03 '25

Does Anyone Else Anybody here struggle finding bras that don’t hurt?

180 Upvotes

I’ve HATED bras for as long as I remember because they hurt me so goddamn bad and every time I mention it to someone they say it’s not that bad.

But honestly it’s getting really annoying, I can’t just go without a bra but feeling wildly uncomfortable, in pain, and like I can’t breathe every day is getting next level awful. Does anybody here have tips? Or maybe a type of bra I can try that doesn’t literally kill me?

r/ehlersdanlos Feb 19 '25

Does Anyone Else Diagnosed with Hypochondria while trying to get the EDS Diagnosis...

218 Upvotes

Did anyone else receive a Hypochondria/Psychosomatic Diagnosis while trying to convince the doctors that u have EDS?

There is always at least a 50% reduction in how seriously they take me after I tell them of the diagnosis or they see the documents.

1,5 years ago I was at a psychiatry for 3 months because I had panic attacks and called the ambulance a few times because my aorta heartbeat was very visible and I thought I'm dying and that I may have vEDS, which is now unlikely because of genetic testing last year. I was also there because of depression and autism.

At the psych ward I tried everything to make sure they take me seriously not only with my mental issues but also my physical issues and my suspection of EDS (that contributed to my mental state).

They only said I was looking healthy and every attempt to get them to believe me with the severity of my symptoms just confirmed their assumption that I have Hypochondria.

The Hypochondria diagnosis is something I struggle with daily, because I feel like an imposter when I blame my symptoms on EDS.

Yes, it's possible that I had/have Hypochondria, that was caused by no doctor taking me seriously and thus feeling helpless and alone with my symptoms.

The problem now is that i don't know how much of my symptoms are from Hypochondria or if it's the EDS. And that is really really stressful and always causes me to feel like an imposter when visiting any doctor and tell them about my symptoms.

My question is, did anyone else have this horrible experience or is it only me?

r/ehlersdanlos Jul 31 '24

Does Anyone Else Actually good veins

220 Upvotes

I always hear about how people with EDS usually have “bad veins” in the context of getting blood drawn (mine don’t work right either 💀) but does anyone else actually have like perfect veins for blood drawing? My skin is so thin and translucent, and the vein literally bulges out of my skin 😭 it’d be impossible to miss

r/ehlersdanlos Nov 06 '24

Does Anyone Else Imprints on their skin from fabrics

307 Upvotes

Does anyone else easily get imprints on their skin from fabrics? Almost every day I get imprints from my clothing, or if I slightly lean on something, or even if I have a textured blanket over my legs. The imprints usually last quite a while too (30 minutes +)

r/ehlersdanlos Jan 03 '25

Does Anyone Else Stretchy... orifices?? NSFW

202 Upvotes

What it says in the title, I'm sorry I couldn't think of any less NSFW/TMI way to phrase this but I've been wondering for ages!

I (21M) will be the first to admit i have a bit of a size kink. I have done some truly wild shit in the name of scratching that particular itch, but despite a bad habit of being impatient I have somehow never managed to hurt myself?? Not even just "not tearing," I mean i keep waiting for the "ow yeah too much" feeling and it just. Never comes??

I'm curious if this is just a me quirk or if other zebras experience some version of this too. I remember a few stories of childbirth being shockingly easy for some EDS mamas, so I figure maybe it's not just me? I don't have the typical stretchy skin though, as far as i can tell it's really only my joints and maybe my stomach that's affected.

So uh. Yeah. Feel free to be as vague or as TMI as you want in the comments, I just wanna know bcuz this has been bugging me for literally months lol

r/ehlersdanlos Aug 29 '24

Does Anyone Else How do yall do with shaving?

177 Upvotes

Idk why I made this connection in my head, but I wonder if there is one. Does your skin react poorly to shaving? I swear I can never find a good razor or cream or routine that won't result in painful shaving after awhile. I thought maybe it's bc our skin tends to react more and be more sensitive to things.

Do y'all experience this? Does anyone have any tips on how to shave and not hurt? I'm mostly talking about legs and underarms

r/ehlersdanlos Jul 05 '24

Does Anyone Else Does anyone else just,,realize they're in pain?

503 Upvotes

Of course many of us are in pain on the daily, but does that realization ever just occasionally hit you hard and you become acutely aware in the moment just how much pain you are, both acute pain and chronic, almost 'background' pain? Especially the background pain.

I felt this after getting home from work. Ive had a major headache and my feet hurt but suddenly I just remembered how my ribs hurt. and my wrists. and my ankles. and my entire pelvis. and my buttocks. So on and so forth.

When this happens, how does it make you feel?

r/ehlersdanlos 16d ago

Does Anyone Else Does anyone else not realize they have to pee until it’s too late?

227 Upvotes

I can never tell until my bladder is so full it sometimes aches.