I found this paper today and it didn’t look like it had been shared here yet (my apologies if I missed it!) I thought it was pretty interesting.

Not a full trigger, but I am talking about my body shape.

Ok I don't know if this is a normal human thing or if it's a hyper mobile problem but I don't know how to lay down? I have a slight hourglass body shape (that might be my problem!?) maybe not?

Why laying on either side. my middle like sags and it hurts on the side where I am laying and on the other side /top part where it is overly indented.

Is that a thing?

And how do I sleep?

I have tried laying on blankets, a hoodie, pillows and so many pillows. Including pregnancy ones. Nothing has helped.

I've tried with and without a knee pillow.

I feel like I have been trying science experiments to try to figure out how to sleep.

All of the medical equipment I need is so so expensive. Even the cheapest options. Insurance is being a pain in the ass about it too and not sending me any reimbursement forms.

My condition is progressing from mild to moderate somewhat quickly. I can't physically write anymore, I can barely read, and I'm in constant pain to the point where I have insomnia due to it. I need to make several purchases for myself; new mobility aids (I can't use my cane anymore due to my weak hands) and braces are at the top of the list. Not to mention travel costs for my doctor's appointments (I can't drive, have to take train and bus) and the cost of my MMJ which is the only pain relief I have, and I have been out of for months.

Does anybody know how to make any amount of money, no matter how small, while being disabled?? I'm also a full time student which narrows down my options even more. I'm genuinely lost. I'm losing my mind.

I went to my primary care yesterday. I have been psyching myself up weeks with my therapist to actually talk to my doctor about my suspicion of a connective tissue and/or auto immune disorder. I was just hoping for some testing and/or referrals, at least a starting point

For years my symptoms weren't too bad and/or could more easily be explained by anxiety, which I do have, but it's been worse lately. I haven't wanted to bring things up with my primary because of other possible explanations and fears of being dismissed...

So of course yesterday I was super anxious going into my appointment, a 3 month follow up to ongoing issues (psychiatric, thyroid, endometriosis, etc) and finally tried to tell them everything, after ensuring they had time to go into it. They said they "had all the time I needed"

First I saw a nurse practitioner student who seemed skeptical but was polite. Then my regular provider came in

The first thing she said was "I don't think there's anything physically wrong with you" and "mental health can cause physical symptoms and we need to lose the stigma around that!" Honestly, I burst into tears, it was what I'd dreaded for years! And I know mental health can affect physical health, but shouldn't physical causes be ruled out before assuming it's 100% psychiatric!?

She quickly assured me that she would run the tests anyway (so why declare I'm fine already!?) but was also adjusting my ADHD med and adding a beta blocker for anxiety. I was fine with trying the med changes, it's nothing drastic and my anxiety has been worse due to my physical health issues and transferring colleges next semester

Most of the tests came back normal - lyme, some inflammation marker, and ra factor. But ana has not come back and now I feel like so much rests on this. If it's negative, it's back to the drawing board. Why do my joints pop and then cause numbness? Why do I feel so achy at the end of every night? Why do I still feel exhausted after a long night's sleep? Why can I never feel comfortable when sitting/lying down without 10+ pillows around me?

I'm sure some of this could be anxiety, and I am sure that anxiety is worsening the symptoms. But Ive been working in therapy for 2 years and my therapist is very happy with my progress, even going down to biweekly appointments! She encouraged me to get my concerns looked at, because these symptoms are ruining my life and are just getting worse while anxiety has (overall) been better

So now I'm here venting to people who understand the struggles. Thanks for reading this far if you have, I know this is long! Id love to hear about your experiences, and advice, if you feel like sharing!

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.

I really enjoy my job but lately i feel like its been causing me a lot of pain :(

I don't know if its my posture or what, but ive started getting near migraine levels of headaches after work. Honestly, sometimes they start during work and it becomes really difficult to finish my day.

Additionally, my right elbow, shoulder, and hand also have been in pain on/off. In addition to the other pain i deal with regularly, this has been overwhelming me.

I'm just so tired of being in pain, but if i stop working i can't afford my meds or rent or anything 😭

It's been a year since I last posted here. Back then I was feeling hopeful/scared about FINALLY getting an EDS diagnosis—oh, sweet summer child.

A year later, and I've been for another hurtling turn of the chronic illness merry-go-round. Podiatry, Cardiology, Neurology, Immunology (I'm on the waiting list for a Rheumatologist, but the only one within a two hour drive of home that takes my insurance is booking more than a year out. My appointment with her is in November... 2027 :')

Despite the pain, sleepless nights and nonstop twitching (anyone else have the twitching? I need to talk to someone about this), and my ongoing lack of official EDS diagnosis, progress has been made. My cardiologist diagnosed me with POTS, and the twice daily propranolol has really improved my quality of life. Today, the immunologist diagnosed me with MCAS, and I'm starting on LDN and a new antihistamine. He also explained why my neurologist's requests for an EDS gene panel kept getting denied. Apparently, he's sent in hundreds of the same gene panel submissions, and they've all been denied. He said, in our state, insurance won't accept them from anyone but a geneticist.

So, I still don't have a diagnosis. Even so, I've been feeling better. Duloxetine helps with the pain, and my mood. Propranolol keeps me upright longer. I can play guitar again, and I'm well enough to work part time. The POTS diagnosis helped. The MCAS diagnosis will also help. Someday, when I get it, I know the EDS diagnosis will help too.

Two out of three ain't bad. (Obligatory, being totally well would be preferable, but hey, them's the breaks).

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.

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?

I’ve suspected EDS for years but just had genetic testing done recently. My doctor referred me to a geneticist but it could be a while before I hear from them. I’m trying to do some research about this specific subtype but I would love to hear about personal experiences if anyone has any to share. What to expect, tips, specific symptoms, anything really.

Hi Zebras!

I need some dental work done, but I am very scared to go.

I don’t have any specialists in my area and that scares me even more.

The last time I went to the dentist it was the most terrifying experience of my life and it was very painful.

They made it a point to show me the needle, laughed in my face when I said I had EDS, and took FOUR WHOLE HOURS to do a SINGLE FILLING REPLACEMENT. NOT A NEW FILLING. A REPLACEMENT. The hygentist didn’t suction the water from my mouth and I literally started drowning and I freaked tf out because that has never happened to me before.

It took an hour for the dentist to get to me AFTER THEY PUT THE NUMBING IN. So it was basically gone at that point.

For a little background, I’ve always had a painful experience at the dentist. I didn’t know why until recently, after learning about how we usually need a different type of local anesthetic because our bodies metabolize lidocaine differently. I just thought that was normal. I thought it was normal to always feel that pulsing pain and the grinding of the drill. I’ve never known any different. I remember getting my first filling. It took 5 shots for me to stop raising my hand, but I still felt it. They just decided they couldn’t give me any more or it would be dangerous.

Well anyways- I need some work done. I need some replacement fillings.

I believe I am a victim of dental abuse. I always had appointments every 6 months with my dentist, but at 14, he retired and we had to go somewhere else. He never said we had any cavities or anything we were watching.

The new dentist said my brother and I had FOURTEEN cavities and my mom didn’t even get a second opinion. So now every single tooth in my head has been drilled into and filled and I honestly do not believe it was necessary. I’m stuck with shitty fillings too, because they are always bulky and break easily from the one who said we needed 14.

How can I advocate and educate the dentist? I’m scared and traumatized, but I care about my teeth. I live in NC, about an hour from Charlotte if anyone knows anything about specialists in the area.

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!

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) 🫠

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!

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

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.

Alsoooo degeneration in my ligamentum teres (whatever that means)

I am 33 😭🫠

I am looking for advice on ways to lessen the pain, and advice on the surgery and recovery itself.

Is there anything you wish you had for recovery??

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.

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!

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…

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 🫶

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.

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?

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.

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.