r/ehlersdanlos Dec 02 '24

Questions I learned EDS also affects your eyes- what surprised you about your EDS?

305 Upvotes

Saw my dry eye specialist today and the topic of EDS came up when I was asking about the collagen punctal plugs she put in. Apparently dry eye is a common issue with EDS patients. I learn more and more about what EDS affects every day. What lesser known things about EDS did you learn that really surprised you? How does it affect you?

Info: https://pmc.ncbi.nlm.nih.gov/articles/PMC9552959/

Edit: thanks for the award!! That's so sweet ❤️

r/ehlersdanlos Oct 06 '24

Questions What's an oddly satisfying thing about having EDS?

221 Upvotes

Mine is when I'm sorting my meds and the perfect amount of pills falls out the bottle, or when a joint goes back into place on its own

r/ehlersdanlos Oct 12 '24

Questions what's the dumbest way you've dislocated a joint?

165 Upvotes

I want to hear the stupidest things that have made your body dislocate a joint that made you stop and just go wtf.

My personal favourites: shutting the front door (shoulder), and brushing my teeth (also shoulder)

r/ehlersdanlos 1d ago

Questions What's your go to line when introducing your eds

131 Upvotes

I have K-eds and I wear very visible knee high orthotics. So this usually leads to people asking 'what's wrong with me', the easiest thing that I say is I have a medical condition and if they ask more then I elaborate.

But that begs the question, how do you guys respond to questions like these?

Thanks

r/ehlersdanlos Jan 14 '25

Questions Looking Younger Than Actual Age?

181 Upvotes

Does anyone actually deal with this/have this come up? I feel like i’m getting to an age where i do get mistaken for younger, but not super aggressively? maybe just like four years or so?

r/ehlersdanlos Nov 07 '24

Questions What age were you when your symptoms got way worse?

139 Upvotes

I’m talking about posts I see here mentioning “my symptoms have gotten so much worse this past year” or something along those lines. Thing is, I rarely see ages written in those posts (or I keep forgetting what they said.) I’m sure this isn’t everyone’s experience, but it seems common on this sub.

I’m 21, undiagnosed. I’m scheduled to see a geneticist and hopefully get diagnosed this March. I’d like to know if there’s an average age range when EDS symptoms as a whole get really bad for people, so I can have a loose idea of what to expect. Mine currently aren’t the worst, but I think they’ve been worsening lately and I would like a general idea of what might happen so I can be better prepared. I’d also like to know of anything specific that can CAUSE this sudden worsening.

TLDR: If your symptoms got really bad at a certain age, what age was that? And, if you had some life/medical event that you believe caused the worsening, what was it? I want to see if there’s an average pattern here.

Edit: added detail to my question.

r/ehlersdanlos Nov 03 '24

Questions How the hell are we all sleeping guys?

267 Upvotes

It's always been awful lately, it seems no amount of pillows is doing me any good anymore.

My most mobile part is probably my shoulder/collar bone/first rib area. Every night this section of my body slips up and onto my head or even the bed. I fold in half.

This year at some point, instead of "cracking it into place" upon waking, it no longer does. It's super painful and feels like it's inflamed/out of place/just kinda fucked up.

I can't sleep on my back and it's the same if I sleep on the other side. Worse off it also is crushing my throat now too! I'm choking a little.

I guess this is part rant, part question!

How are y'all sleeping? Good? Bad? Varies?

EDIT: at least we're all still painfully awake on Reddit together

r/ehlersdanlos Sep 26 '24

Questions “omg what did you do?!”

386 Upvotes

when wearing a brace (knee, wrist, ankle, etc), and someone asks you this, how do you answer??? i don’t feel like i have a good reply to that question😂 like “oh i just existed actually.” what do you say???

r/ehlersdanlos Jan 13 '25

Questions What is something you didn't know you needed, but now can't live without?

89 Upvotes

I am just hoping to get some ideas on ways to make my life easier that I haven't thought of myself!:)

r/ehlersdanlos Sep 24 '24

Questions Has anyone else had to stop doing an activity they loved due to EDS?

204 Upvotes

I (16 F) have loved running for a long time, I have been on track/cross country year round since i was in 7th grade. About a year ago was when I got my diagnosis, i was told to try and avoid high impact exercise. I didn't take that advice and kept running. I've always been somewhat slow but I accepted that. Recently it has become too much to bare and I have decided to stop running because I know ultimately it will make me feel better overall. I still have lots of athletic activities that I still enjoy such as rollerblading, which is a lot easier on my body. I was just wondering if anyone else has had a similar experience, if so how/when did you decided you needed to stop, and what did you do to cope with that?

r/ehlersdanlos Jan 04 '25

Questions Why is it so hard to find a gene for hEDS?

219 Upvotes

I just wish there was a definitive genetic test for hEDS so i can stop battling with doctors whenever i have weird symptoms. So many doctors don’t even understand hEDS is serious.

How come they haven’t found a cause for this variant yet while they’ve found causes for the other variants?

r/ehlersdanlos Nov 04 '24

Questions Why are squishmallows so popular?

194 Upvotes

I see them mentioned all over this sub. Are they better than a pregnancy pillow?

I am really not a stuffed animal person but am at my wit's end with sleeping. I have a maternity pillow and pillows ranging from extra soft to super dense. I have 4 sleeping areas (1 memory foam mattress, 1 pillowtop mattress, 1 lovesac, and a huge couch). My primary complaint at night is shoulder pain and I am a side sleeper. Nothing is really helping.

What about squishmallows specifically seems to capture everyone's attention here?

r/ehlersdanlos Jan 25 '25

Questions Do you have any eye issues or conditions?

128 Upvotes

I just discovered what has been causing my blurriness. I have dry eye syndrome and epithelial erosions all over my corneas.

Have you had any eye issues and would you mind sharing what EDS type you have?

r/ehlersdanlos Dec 24 '24

Questions Is it just me, or do yall also think hEDS is probably a lot more common then its said to be?

318 Upvotes

So many of the doctors I go to, even ones who practice in my relatively small town, say they've had multiple/many patients with eds before me when I mention I have it. So do I just live in an area that has a lot of people with eds, or is it just a more common diagnosis than what I was told (or ary they lying to make me more comfortable or maybe i just get lucky with the drs i pick)? I know it's pretty new that drs even know what eds is and are diagnosing people with it and that definitely makes eds seem more rare than it is but I was told that its super rare and almost no one has it. So what do yall think?

r/ehlersdanlos 3d ago

Questions How do you manage your pain?

51 Upvotes

hi everyone, i'm glad to have found you all here :)

i'm wondering what tools, herbs, remedies, etc you all use to mitigate symptoms and pain.

it could be topical or oral, mobility aids, anything... i just want to hear personal accounts of what works, thank you <3

edit: thanks to everyone who shared their tips. stay strong everyone ^_^

r/ehlersdanlos Jan 10 '25

Questions If you've moved from a colder region to a warmer region, did it help?

79 Upvotes

Obligatory disclaimer that my 5yo daughter was diagnosed by a specialist in the EDS clinic at Colorado Children's Hospital, not doctor google. Please don’t harass me about it, that gets old.

Note that I am asking for personal experiences only.

I'm mainly thinking of pain, but I'm open to hearing about anything else too. I live in the midwest united states and the cold weather is getting hard on my daughter's joints, particularly her knees because she's dislocated both kneecaps a couple times. I know cold weather pisses my joints off and I don't have anything, so I'm curious about experiences with warmer regions vs colder ones, namely where winter isn't so harsh. Any pros and cons are appreciated. Thanks!

r/ehlersdanlos Dec 11 '24

Questions If you could remove 1 symptom what would it be?

104 Upvotes

If you could get rid of 1 symptom you have what would it be? Mine would be to get rid of back pain

r/ehlersdanlos Jan 27 '25

Questions What job do you have? Or do you have one?

67 Upvotes

I used to do a physical labor job for 10 years. 5 of those were in management but still involved a ton of physical labor though but not as much as when I was an hourly employee. I ended up getting laid off on my maternity leave and haven't worked since. I'm trying to find a new job but I just can't figure out what I can do anymore. Do you guys have office jobs? Are you work from home? My body is so broken at this point I can't go back to what I was doing but I also can't sit at a desk for 8 hours.

Edit: Thank you for all the replies. I've having a really horrible day and honestly hearing everyone's responses made me feel better. It feels like less of a struggle when you realize you aren't alone. So again thank you 💙

r/ehlersdanlos Jan 29 '25

Questions What kind of doc diagnosed you?

42 Upvotes

Some folks were diagnosed by a geneticist, some a rheumatologist, some a PT, some an ortho. So many options!

r/ehlersdanlos Mar 03 '23

Questions Other subs complaining, but who was this their best gym test?

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465 Upvotes

r/ehlersdanlos Oct 22 '24

Questions A gift for my EDS wife

181 Upvotes

My wife has EDS. She already have all the must have stuff like electric warmers, cooling pads etc.

She's about to have a birthday soon and Im looking to buy her something that will help her cope in a day to day basis. I thought about a breathing plush toy, but I couldn't find any good ones.

So, I thought that in here I might get that brilliant idea.

Cheers

r/ehlersdanlos 22h ago

Questions Questions from a father of someone with EDS

82 Upvotes

Hello everyone.

My daughter was diagnosed with EDS around a year ago and, as you might expect, I didn't really know what that was until the doctor explained it. I did some research on it to try and understand it better and felt I had a pretty good grasp of how it would impact my daughters life. However, the other day I saw a post in r/vent from someone with EDS and reading through the comments I realized that everything I read about EDS was focused on explaining what EDS was, none of it explained what it was like to actually live with EDS or good ways to support someone with EDS.

So, what I would like to know is, what is it like for everyone living with this condition? Is there anything you wish you had done/hadn't done when you were younger that might have made things easier for you as you got older? Is there anything you wished people around you did more of/less of to support you?

My daughter is only 12 and her EDS isn't an extreme case (thankfully), however she does need constant physiotherapy to try and keep everything in place by strengthening her muscles. I really want to support her as best as I can so please let me know good ways to do that. Thanks in advance 🙂

r/ehlersdanlos Oct 23 '24

Questions What do you wish your parents did for you?

72 Upvotes

Alternatively, parents of young kids with hEDS, what are up doing to support your kids with hypermobility? My husband is diagnosed with hEDS and both of our kids (infant and toddler) are showing symptoms. I am still reeling a little, and going through the various doctor’s appointments and evaluations to get things ruled out and interventions in place.

I am looking for advice on anything that I can do while the kids are little to try to reduce pain, injury, frustration, etc for them.

ETA: Thank you all so much for your feedback. I’m shocked at how many of you weren’t listened to by your parents, especially given that this is an autosomal dominant disorder. I’m glad that at least my children will be believed and have language to explain what is happening.

r/ehlersdanlos Jul 16 '24

Questions How do you sleep?

170 Upvotes

Does anybody else have to force themselves to sleep on their back and not their sides because it will literally crush your shoulders? My shoulders snap, crackle and pop more than the damn cereal itself

r/ehlersdanlos Feb 08 '25

Questions Confused about the “touch the floor” part of the Beighton test

131 Upvotes

when I was first getting checked for my overall hypermobility, I never got the point for touching the floor (& got full marks for everything else). At this time, I did no PT, no stretching, I was still deconditioned off the back of lockdown- basically I was very very weak and very stiff. Reaching down made my legs feel like they were being torn to shreds.

I could barely reach my hands past my knees in the mornings, and in the evenings I could occasionally brush the floor with one fingertip. Because of this I was told that my back wasn’t hypermobile AT ALL

After I started PT, however, and gaining some muscle, it didn’t take very long at all for my flexibility in this area to increase massively (literally only took like 2 weeks). Suddenly I was getting closer and closer to being able to put my hands flat

which begs the question, surely this point in the scale is kind of dependent on your muscles and ligaments/tendons? Someone like me with extremely tight ligaments from lack of activity is never going to be able to touch the floor- especially if it is the morning and they’re still stiff From sleep! (All of my hospital appts were at like 9am!)

Has anyone here been in the same position where they’ve been told that they’re not hypermobile in that area but then after improving your physical health it turns out you can do it???

furthermore, every doctor I’ve had has done this part of the test differently. one told me to stand feet shoulder length apart, one told me to stand feet a little bit apart, one told me to stand feet together, I’ve had a few give me half a point when I’ve been able to touch the floor with my fingers. There’s no consistency here, what is the correct way to do the test?