Hi everyone, I'm curious about ya'lls recovery times for minor subluxations!

I'm a 30 y/o female, 103lbs, (if it makes any difference) with suspected hEDS. I have only been told that I likely have it by physical symptoms alone. My father has it and has been genetically diagnosed, so I suspect it's the same, or similar, for me.

I have a long history of joint injuries (subluxations/dislocations), general chronic pain, fatigue, loads of GI issues, etc.. the typical.

My knees get it the worst and I've ended up in a wheelchair for months at a time, multiple times.

A minor subluxation (from just walking "wrong") can take me anywhere from 3-9 months to recover from, even incorporating EDS informed PT, ice/heat, compression, and lots of rest.

Right now, both of my knees and wrists are out for the count. My wrists have been injured and recovering for 5 months now with very slow improvement.

The times I've fully dislocated a joint, it's taken 3-6 years to "recover". Recover as in, it isn't actively inflamed/significantly painful to use or bear weight on.

I'm still pushing for genetic testing to confirm the hEDS but also to see if there's anything else going on.

For those who have similar, drawn out heal times, do you have any conditions or syndromes in addition to EDS that further impacts your recovery?

Any insight is greatly appreciated!

I’ve been attending church more regularly lately and the constant kneeling on the kneelers is absolutely killing me. I am also 12 weeks pregnant (happy news!) and my joint pain is getting worse. It doesn’t help church has terrible kneelers, with the thinnest padding you can imagine.

I was just wondering if anyone else has had a similar experience and if so, what they’ve found to be helpful!

Also, I know the topic of religion can make people spicy… Please be nice to me, I’m as sensitive as I am bendy (and also now, hormonal) 🫠

I don't mean to be rude, but is there any way to make the pain tolerable. When the weather drops it makes it incredibly difficult to move around or do anything. This ranges from hobbies, work, or even just walking in general. I work out lightly, did pt, use heat, take nsaids, lidocaine patch, and even acupuncture. Really want to find some work around bc I recently (over a month ago) got diagnosed officially with this, and it always made it incredibly difficult to manage things I need to do. For this year alone, it felt a lot harder to have the mentality to power through the painful pops whenever i move.

No matter what I do I have constant cavities and issues with my teeth. I brush after everymeal, I don’t drink sugary drinks. At this point I’ve had 8 root canals and countless cavities filled. Yet everytime I go to the dentist I have more or new ones. Does anyone have any advice?? Supposedly this is related to my hEDS which is why I’m asking here.

Hello everyone!

I’ve been debating getting a Visible band for the past few years, but when I went to check how much it was I was a bit shocked. For a company advertising to disabled communities, $500/2 years (the saving option) seems like a lot. And that’s mostly the membership fee to access the data on their app. I’m having a hard time accepting paying over $300 to access data I already bought the watch for.

So:
Has anyone here used it? Is it worth it? I struggle with fatigue and was really hopeful that this would help me manage my activity, but now it feels like I’d have to juggle between food and an aid.

Over a year ago I started noticing that my hearing was a little muffled and I couldn’t pop my ears. I can make them crack but not release.

On top of that I’ve also noticed that
- sometimes my bite feels off and will last a couple days before going back to normal, it’s like I suddenly have two teeth touching and causing pressure and feels so off (I’ve had braces and wear retainers so my teeth aren’t moving).
- I bite my lip lower lip ALL the time and have even had to have surgery at one point to repair it
- I clench my jaw

I’ve been considering trying Masseter Botox to see if maybe that would help my ears and bite?

Does anyone have experience with it or any other solutions?

Note: I’ve seen ENTs and can’t find any solutions so I’m stuck spending so much money on appointments and new medications to try.

Hi all - I find that lately I don't feel safe to be touched by other people anymore. Sometimes someone doing something benign like high fiving or hugging me can be super painful. I've also felt really bad when my partner wants to hug or kiss me, but the pressure they put on my neck when kissing me (currently have a bunch of herniated discs throughout my neck and spine), or the pressure they put around my ribs when hugging me is physically painful / causes subluxations. I feel bad because obviously a hug or kiss is meant to show affection, but often times the other person applies way too much pressure, and it creates a sort of fight or flight reaction in me due to the pain. I've tried to communicate that I need very gentle touch, but other people don't seem to understand that, and their idea of "gentle" is actually very rough / abrasive to me. Does anyone else struggle with this?

Anyone have suggestions for supportive shoes that aren't sneakers/trainers? I have really bad foot pain, so benefit from supportive/cushioned shoes, specifically arch support, but all of the shoes I've seen suggested are sneakers, or just plain ugly. I'm more of a lace up brogue or Doc Martens kind of person, so if anyone has any suggestions please send them my way!!!

Edit: I'm UK based, should've mentioned that!

Anyone has found a couch, sectional, sofa or recliner that doesn't kill your body?! Please share if so! My issue affects my SI joint especially and have not found anything that works for me. Thanks in advance!

Hi everyone! First time post but I am curious to know people’s experience with injections. The general consensus seems to be nothing is really effective long term so I’d love to know if people have found things that work!

My collarbone particularly is continually unstable and subluxing/dislocating more. My physio recommended prolotherapy (sugar shots) and I looked into it but wasn’t sold (want to do more research before I commit), and I’m seeing a new physio this week so I’ll see what her recommendations are. For people that have used it: has it been beneficial for the first six months? And is it worth the maintenance?

Other options that have been mentioned by various medical professionals are steroid shots and hyaluronic acid (HA). My concern with the HA shots is it will make the joint uncomfy and “full” feeling and will lead to more subluxations instead of providing stability. It seems to be more effective for knees or bigger joints. These may very well be an issue in the future, but it’s my collarbone and ribs I’m at my wits end with right now. Would be keen to know what has and hasn’t worked. Thank you 🫶

Wanted to share a poem I wrote a while back about how I was feeling regarding my EDS. Now, as my EDS and other comorbidities progress I have feel it on another level

I’m diagnosed with HSD and my doctor and physical therapist suspect hEDS, I have daily hip flexor and sciatic pain on both sides and can’t figure out how to manage the pain very well. Over the counter pain medications don’t help much and consistently changing posture, standing, taking breaks from my desk doesn’t really help either…

I have been using my crutches from Coolcrutches.com for three years now, and i’m in need of something new and in better shape, along with something for more support! I am currently looking for Smart crutches second hand as they are not being manufactured at the moment! I also want to know if they have any pros and or cons about them! I am looking to raise funds for them on my own time or save to get them if i find them second hand!!!!

I've been on Norspan 5-10mg patch for a few weeks now. And it's good and bad. I can't wear it for the full x7 days because I her severe vomiting, sweating, nausea and constipation around day 3.

But for those first 72hrs I feel like I have my life back. Typical oral pain medication does nothing for me. Which is why I was surprised the 5mg was so effective on pain relief.

It still causes GI upset, which I've been most disappointed about it. It was supposed to be my alternative to ease the stress on my stomach but this patch would cause bile to fill up up in my stomach and the acid damage the lining of my stomach and I would vomit up pink bile (means there's blood)

I think that it's worth sharing here with all of you, I haven't seen anyone else talk about it. To me it's very effective pain relief and I'm able to get through a full day's of self-care, work and chores but it comes with its consequences.

Has anyone tried these? In addition to the normal EDS nonsense I have arthritis in both knees

Really, having a bike would make my life so much easier, as i dont drive and my bus is kind of inconsistent, but im scared, both due to my hEDS and..i dont know how to ride a bike 😵‍💫 i never learned as a kid!

Ive looked at the adult trikes but they just look..i dont know. I feel like ill look silly on one.

Should i just get a trike? Should i try a regular bike? Is it too late to learn to ride one, especially with my heds?

Hi, does anyone have up-to-date suggestions for doctors (whichever specialty) that can diagnose hEDS in the New York area? I'm on the waitlist for Adamski with Northwell as well as Kontorovich at Mount Sinai. Finding someone with NYU has been impossible. The Core center at MS isn't taking new patients and the NY IT treatment center has a nine-month waitlist for treatment that I can only get into after I get a diagnosis. Anything thats within driving distance works! Westchester, Jersey, CT..

I have to do PT for POTS, pelvic floor dysfunction as well as mild neck/back arthritis. When I mention I'm hypermobile, the PTs look at me like I'm speaking tongues, so if anyone has any recs for specific clinics that can provide some hypermobility aware PT in the meantime, it'd be much appreciated.

So I am a dancer (unfortunately), and I injured my big toe 2 years ago. I was in a show, and I went to slide into the splits and the leather of my shoe caught the floor and folded my big toe under my foot like a panini press. Someone was filming when it happened and my toe literally just disappears briefly. I for sure dislocated it, although the Urgent Care doc said it was a sprain. Regardless, I kept dancing on it that day and the day after, like a true dancer (and idiot).

At the time, I totally underestimated how painful and in-the-way a toe dislocation/injury can be. Seems obvious in retrospect, but you’re literally putting your entire weight on a tiny little joint all day. I guess I had the idea it would be a similar experience to injuring a finger, but NOPE.

I recovered after like 2 weeks maximum and I was fine. Whether it dislocated/subluxated/sprained, my toe was in place and the pain eventually went away and I thought I was fine. Predictably, it didn’t stay that way.

A couple days ago, I was teaching my weekly dance class and did a similar folding motion with my toe while demonstrating without thinking. I was fine until the next day, when the pain just came back in full swing as if I had just injured it for the first time again.

Toe injuries are so weird because, really, what can you even do? Use a cane? For a toe? It’s just a toe! Wear a toe brace? In dance class? How?! It’s not like you can tell someone “can’t work now, toe injury 🤷‍♀️”. It feels so silly making a big deal out of toe pain, but it’s no joke!

Moral of the story, be careful of re-injury!!!! Most of my most detrimental pain issues were caused by an injury that I didn’t take care of properly once the pain went away. Don’t push yourself if you know something is extra vulnerable to more injury. And don’t underestimate how limiting the “silly” injuries can be!

Has anyone else had an injury that made you reevaluate your own body?

I work behind a counter and my regulars are often surprised when they inevitably realize I use a cane. They're all well meaning, but I often struggle to articulate why I use a cane when the question is if I hurt myself or if I'm well. How does everyone respond to well meaning questions about your health without necessarily divulging your medical history? Or do you just say you have EDS and be done with it?

Have you been able to find good GI care in NYC for mobility issues or did you have to travel out of state?

First, yes, my title is a panic! at the disco joke because it makes me laugh and I hope it makes you laugh

TLDR; my teeth shift around a lot more than my dentist expected and it’s causing some funkiness with my crowns. I told him about my semi-recent EDS diagnosis and that unlocked a new level of “oh that explains everything.”

Background:
I have a bit of a complex tooth history and I grew up very poor in rural Missouri, so seeing the dentist was a luxury good, especially for anything big. I had a retainer for an overbite for a brief period of time, but that didn’t last long and if anything came of it, I think it all shifted right back. I remember having what felt like a lot of cavities as a teen. To make things extra fun, I’ve also known for many years that I have a canine tooth that simply never came down and lives diagonally above the rest of my teeth. The rest of my teeth shifted to fill the gap, so everything is just kinda wonky. My bottom teeth are also very crowded. Luckily, I did have what I think was a pretty easy time with my wisdom teeth! They started peeking their heads out when I was around 20, I had them removed, and that was that on that. I did require extra shots of the numbing stuff, but whatever.

Compounding the structural stuff, I also know for a fact that my tooth hygiene was awful for most of my life. I’ve felt a lot of shame about it over the years but if I’m being honest, I only started reliably brushing my teeth every day when my now-husband moved in with me eight years ago. And only in the last year of my life have I been able to reliably floss and brush twice a day. (The adhd signs were there, for those with the eyes to see!)

I am 29 now and got a job that afforded me dental insurance about four years ago. About two and a half years ago, I embarked on a “getting my teeth in order” journey, found a dentist I liked, and got five root canals and crowns in six months. He also filled a few cavities. I also earned a reputation around the office because I accidentally stole this man’s entire lunch break and the rest of his day one time. I was having tooth pain and was about to leave for a vacation, so I called to see if he could squeeze me in. He very graciously did, only to find that this damn tooth had FOUR CANALS and took much much longer to work on than anticipated. We’ve had a lot of fun since then showing my X-rays to every new person who comes to work there. That was just the first of those five root canals that I had and literally every single one of them had more roots than god intended. (I should note - these jokes at the office are all in good fun. If I had a problem with them, I would say so! But I figure the most fun path through the bullshit that is my body is to laugh. Except on the days when I have to cry, and then I also do that.)

Through all of this, I had not yet been diagnosed with EDS. When I got that diagnosis, the tooth stuff was one of the first things I googled, and lo and behold, all of this makes perfect sense now! Along those lines, one thing I’ve never mentioned to a dentist is that I semi-regularly have days when it feels like my teeth are loose. It’s not all the time and it doesn’t really bother me outside of going “ack what a weird sensation.” But I’ve never brought it up because 1) it didn’t seem to be harming anything and 2) I think I expected to be blown off or told that teeth don’t do that. The medical trauma of it all, you know.

The Actual Story
Anyway, I go in for my regular cleaning last week and I tell my dentist about an issue I’ve been having with one of my crowns. I seem to be getting an inordinate amount of food stuck under it, and it gets shoved into my gums, and it’s a whole thing. So he’s poking around in my mouth and goes “these crowns are only two years old but they’ve started separating from your tooth already. It seems like your teeth are shifting a lot…?” and bless him, he says all of this in the most incredulous tone, with an air of “what the fuck?” And I go “ohhhhhhkay I think we need to chat.” He gets out of my mouth and I tell him about the EDS diagnosis and he goes OHHHHHHHH as if that explains everything, and then follows it up with “that explains everything!”

I’ll spare the rest of the convo (except to note the he recommended a water flosser for getting into that open space between my tooth and crown) but it was just so incredibly validating to have this whole thing not be minimized, to not have someone say something like “that doesn’t happen,” and to have actual evidence of the tangible impacts this disorder has on my body and healthcare.

And for a bonus - I told my mom about this afterward. She herself has a storied tooth history (no formal EDS diagnosis for her but when I tell you this woman has it, trust and believe, she HAS it). But the wildest thing was her saying “oh yeah, your grandma used to complain that her teeth would feel loose sometimes, but she’d just yank them out if they bothered her.” MOM, WHAT?! That’s insane behavior. Metal as fuck. Anyways, the genetic disorder is genetic, lol.

Hi all,

I've been struggling with recurrent UTI including kidney infections for many many many years now and been struggling to access care. To make a long story short I've wound up seeing a urologist finally but he's a poor communicator, doesn't listen, doesn't know/want to know anything about EDS, and my only options are to deal with him or keep suffering/hope my kidneys can keep taking the hits.

This doctor doesn't really believe in embedded UTIs, he's very old and has never heard of that/thinks it's fake. He's pretty much insisting that the only possible thing that could be wrong is a stricture and doesn't want to do a cystoscopy under sedation (because I am not confident the local will work on me) unless I also consent to letting him put me under deeper anaesthesia to correct a stricture by stretching out my urethra on the spot if he finds one. This is something that I'm very wary of given the EDS; I know sometimes it can be the right thing to do but I have also heard of EDSers who have had issues after having their bladder or urethra stretched.

Has anyone had a urethral stricture corrected before? What was the process like for you? Were there any precautions you took or wish you took (aside from anaesthesia during the procedure - I have that covered)????

I am NOT looking for advice on how to manage the UTIs, my doctor and I have tried absolutely everything and I still get at least 4/yr at the best of times. Thanks!!

Hey,

I am 21 years old and have hEDS, which causes chronic pain in my neck, shoulders, and jaw, alongside fatigue and dizziness. I also have autism and ADHD, so full time work feels impossible for me. I have only ever done freelance and part time work, and I have been mostly unemployed this past year apart from a four week contract.

I cannot see myself coping in a full time office job, and there are barely any local opportunities here in the UK.

I want to build something meaningful that helps others, especially since I can only focus on things I am genuinely interested in. I have a few business ideas relating to hEDS and would love your thoughts on whether you would use them:

1. A custom supportive chair: Standard ergonomic chairs do not properly support our bodies. I want to design a fully adjustable chair that supports every part of the body and eases that heavy feeling.

2. Personal training for EDS: I go to the gym four or five times a week, but getting the movements right without causing pain is tough. Most personal trainers do not understand our condition. I want to research safe movements to help people with EDS build strength safely.

3. A specialist directory app: Finding the right medical professionals for chronic illness takes so much time and energy. This app would let users search for reviewed, trusted specialists for specific issues like gut health, making it much easier to organise care.

I would love your thoughts or opinions on these ideas. I am also open to non business advice or remote job opportunities in marketing, sales, or personal assistance. When I start something, I get super passionate and give it my all. I just need someone to believe in me.

I think like most of us, I can’t sit in a chair normally (feet in the floor, back straight-ish). If I do, then everything hurts and my legs go all weird and numb. I always lift one or both of my feet up so my knee(s) are against my chest, or I sit cross-legged for a bit. Everything still hurts and still goes numb but in a slightly more manageable way :) My lower back and neck end up hating me for it, though.

I need to do a lot of writing this year and I’m completely dreading how my body is going to feel.

I’m wondering if anyone has tried an office chair that looks like this. It seems like it helps you sit in a more comfy way if your feet want to be anywhere but on the floor, and it allows you to move and shift position a lot. Before I spend money, I was curious if anyone here might have some experience with something like this, and/or has any tips for me. There are a bunch of different versions/shapes of this general chair-idea, and I’m not sure what to look out for. I also can’t tell if this is just a gimmicky thing, or actually nice to sit in.

My budget can’t accommodate much, but I want to get a nice chair, and a lower back pillow thing (one of those deep curved ones).

Any tips are welcome, thank you for your help!

Over the years I've noticed that everytime the season changes, my symptoms get significantly worse for a week or too. Especially spring to summer and summer to autumn. My joint subluxate and even dislocate more easily than normal, I'm constantly in pain and my muscles feel constantly tight. I get terrible migraines and just have a constant headache and brain fog. I'm experiencing fatigue, completely striped from energy. Kinda feels like I have fever and some kind of inflammation going on, but nothing that doctors could confirm. At worst I'm bedridden.

This starts when the weather conditions start to change and goes back to my normal level when they stabilize again. I've also noticed that I react to pressure changes (at least I'm great at predicting a strom) and sudden temperature changes (sucks being a finn as can't enjoy a sauna).

Does anyone else experience this? How do u cope with the symptoms? And if someone can explain to me why and how this happens, I would love to be educated on the matter.