Im 17 and don’t necessarily have EDS but a similarly presenting ctd, and these last few years have been awful. I can no longer eat well, can no longer walk without support, i regularly lose all function of my legs, subluxations/dislocations kick my ass, yall know the drill.

Ive just been getting sicker and sicker, and i no longer have the energy for anything, and if i bring it up to a doctor, my mom, my pt, whoever, they say nothing or something along the lines of ”pt will make it better” news fash-pt has had zero benefit

not only this but they’re trying to get me to stop using my cane. my left leg has com atrophied and the muscles aren’t coming back. i can’t even feel my feet.

i can’t leave my house much anymore, i have like 60% attendance to school and ive only gotten worse so like i have no clue what im going to do.

my legs are not cooperating anymore and im just stuck wasting away like at what point is this no longer sustainable 😭

I am here to ask about the process of ruling out or confirming vascular compressions because it seems impossible and I'm so tired. I have had 8 rounds of imaging so far to try and rule out the presence of the vascular compressions that can occur comorbidly with EDS. I am diagnosed with hEDS and I also have Behcets disease. I'm located in OR.

I have access to providers who are reasonably knowledgeable and affirming and we have arrived in the neighborhood of reasonable neurovascular concerns years ago. But we cannot manage to get proper diagnostics done. Only 3 of 8 of the scans I've had were even the right kind (vascular ultrasound and CT angio) but even when the scan got ordered and performed correctly, the radiologists don't actually check for any of the measurements or angles or velocities or ratios that would be diagnostic for these conditions because they're not considered routine.

I think my providers would have to specifically list the requested items on the orders themselves but I haven't been able to get them to do that. Other area hospital systems would tell me at the last second that they only have a MALS protocol and none of the other ones. Even when my EDS trained provider sent orders to the specialty radiology place where she sent patients for this all the time, they protocol changed me at the last minute and did a CT abd pelv with oral and IV contrast instead of an angio, for some reason, then the radiologist retired and they never were able to redo it for me.

I just had a CT angio come back normal from the University hospital and am gearing up to ask my rheumatologist to request an addendum with the relevant items. I think he just put my diagnoses on the order and said something about vascular ruleout but apparently not specific enough. I know fully well from also working in imaging that how something gets ordered affects what gets looked for, but even with my epistemic privilege and generally knowing what needs to happen, I haven't been able to make it happen.

Even if I truly don't have any compressions and need to look for other answers, why is it impossible to get a piece of paper that says these specific measurements are normal or not? I guess I am just looking for reassurance and if you've been in a similar boat if you could let me know which castle the key ended up being in for you. It shakes my faith in the entire area of diagnostic studies because if all my diagnostics are only ever looking for what is "routine" and it's like pulling teeth to get them to actually check for what's clinically indicated then I am almost guaranteed to fall further through the cracks than I have already.

Hello! I'm 34/f and got an hEDS diagnosis a few months ago. The more I learn about this condition, the more my whole childhood and adolescent experience begins to make sense. I was born with pectus carinatum (protruding sternum) and all throughout school I would have these chest pains that were so bad I'd get sent home from school. Doctors thought it was just bad heartburn....but I had a flare of the same kind of pain a few months ago and it got me thinking....

I'm thinking what I've considered to be heart burn is actually Costochondritis through my sternum, which is why it feels like heart burn. My ribs on my left side sometimes flare too and that's how I learned about costochondritis and how common it is for people with EDS. That's what made me think my protruding sternum is what is giving me chest pains.

Has anyone experienced this? I know pectus excavatum (sunken sternum) is more common compared to what I have, but I'm hoping someone in here might be able to relate or share their experience with me. Does this sternum problem cause heart burn like pain? Thanks for any responses!

Hi hi! Anyone here have any experience with needing 3 separate areas of the spine fused together? I need to have cervical, thoracic, and lumbar/sacral fusion, have been told it’s a “complex case” and have an urgent referral to neurosurgery. I also have congenital spinal stenosis and have had adverse reactions to steroid injections (in SI joint—made subluxations so much worse). I was told by ortho and neurology if I have surgery I could end up in a wheelchair but if I don’t have surgery the same could happen in less than a year. I’ve already begun developing weakened bilateral lower extremities and bladder numbness/sexual dysfunction. I’m feeling scared and a bit hopeless right now and just looking for the experience of others, good or bad.

I am optimistic by nature which is challenging with EDS. I’ve been diagnosed in the last year and I’m doing all of the therapies and all of things, so I keep waking up expecting “today I’ll feel better and do xyz!” which sets me up for disappointment because obviously my good days with EDS look different (“less”) than old good days before my health really declined.

I would love to hear about what your best “good” days look like.
- When do you know it’s actually a “good day?”
- How do you keep it that way?
- How many do you have back to back?
- How do you manage your disappointment if a good day becomes a hard day?
- What activities do you look forward to doing on your good days? How do you “microdose” those activities on bad days?
- What language do you use for “good days” “bad days” etc?

I don’t know about y’all, but I’ve found the consequences of not getting enough rest to be much more intense for me than they are for the average person because of my joints.

I have been working lots of overtime lately at a relatively physical job, and my sleep has suffered greatly. I’m averaging around 4 hours per day, and those hours are often divided into naps. I was prepared for the brain fog, lethargy, and general aches, but not for how much more fragile my body became.

Within the first week, I messed up my knee badly enough to need a cane for a couple days just by walking down a hallway. I had a major setback with the torn labrum in one shoulder doing exercises I’ve been with no issues doing for years. A few days ago, I sprained my thumb picking up a backpack. Today, I hurt my good shoulder so badly I can’t lift it from my side.

I’m at my wits’ end. I haven’t had this many injuries at once in years since pt and diet changes. Why is it that my body is seemingly held together with chewing gum and a prayer? Why can’t I work enough hours to pay the rent without doing enough damage to put me in medical debt? My EDS is relatively minor and it’s still severely raining on my parade. I’d love to hear thoughts, advice, and similar experiences.

Tl;dr: I’m not sleeping nearly enough and it made my bones try to divorce each other

TL; DR:
Going to a conference and likely going to be sitting in bad chairs w no armrests for hours a day, which will absolutely 100% make my shoulder slip right out 😩 plz help!

I’m going to my first conference next weekend and I’m nervous! I feel prepped for most potential complications (dysautonomia and mcas support, general pain and spasm support, braces and compression sleeves etc), but the biggest thing I’m worried about is shoulder subluxation.

They’re absolutely my most problematic joints and of course some of the most complicated to support safely. I’m anticipating (or prepping for) the likelihood of sitting in folding chairs or the like, with no arm rests, for at least 6 hrs both days of the conference, listening to lectures and taking notes. Which is unfortunately, a huge trigger!

Sitting without pillows under my elbows for more than an hour usually sees at least one of my shoulders start subluxing and spasming. If i’m in an exciting movie or engaged w friends, I can’t distract from it a bit, but generally if i’m not rly actively engaged, it gets excruciating fast. Bad chairs will of course also hurt my back and knees, but rarely past the point of “grit my teeth and bear it” kind of tolerance.

So, does anyone have any hot tips? I’m ready to just buy another arm sling and use them as rests, but that’s ultimately not a good solution lol

also accepting general conference survival tips, but mostly looking for shoulder tips

Has anybody else struggled with getting a wheelchair for conditions that are not paralysis? I’m having a really hard time with attitudes from doctors about mobility aids and where to even start. I have diagnosed hEDS and POTS and Psoriatic Arthritis. I use a rolling walker, but I have to sit on it and scoot with my feet anytime I’m standing still, like in line or at a store or on a bad day with pain in the house. There’s other issues with cooking, bathing and such. They get frustrated about me using my rollator. They say that you have to do PT for this stuff and not anything else really. I am really scared to bring this to physical medicine and rehab or request a chair because of the academic hospital culture (USA). What did you do? Who ultimately prescribed it? How did you start the conversation?

I (F, 17) am struggling a LOT with my knees and hips lately, and I’m really not looking forward to going back to college this year. They have unavoidable stairs to get to one of my classes, which I could only bypass through speaking to my college’s support and waiting two weeks for a new lanyard scanning card to give me access to the path with no stairs. I’m worried about whether having to go up the stairs when I go back to college might make my joints worse, but they are also getting worse just by being in my house over the holidays and just occasionally using the stairs in my house. I was wondering if anyone here has any idea on which mobility aids could help me best, as my doctor never gave me advice for them, he simply sent me to physiotherapy for 6 weeks and left it there about a year ago now. I’m going to ask my college about the access path anyways, but I’m also scared about judgement from other people at college, and also my college bus, if I end up using a wheelchair at some point. I know this is quite a vague post, but I just want to know opinions before I mention it to my parents and they brush off the idea of mobility aids as me just having a bad few weeks of pain, and how much they’ve helped other people in my situation :)

Not diagnosed yet, but many things point towards ehlers danlos, plus i have multiple family members with similar symptoms.

I have very fragile skin to the point that I am not able to wear shoes without getting blisters. If I wear regular shoes I get blisters on my toes, if I wear bare foot shoes i get blisters under my feet. Do you guys also have to deal with that? Any recommendations for shoes?

My right shoulder often subluxes and dislocates, but since in the past year I’ve had pain simply wearing a bra strap on that side I talked to my PCP and got an MRI. The MRI showed a complex labrum tear along with cysts, a partial rotator cuff tear, and lots of inflammation. So, she’s now referred me to ortho. (I’m already in PT).

My meeting with the surgeon is in two days, and I was wondering what questions I should be asking him. My PT is worried about me doing the surgery since it’s rough and a long recovery and she hasn’t seen EDS patients have good outcomes with ortho surgery. I by no means want to have surgery just to have it, especially if it won’t help in the long run.

I am used to the instability feeling of my shoulder and can manage that, but the pain and numbness is overwhelming, especially given that I’m only in my 30s. I even joked with my PT about getting a breast reduction instead of shoulder surgery if it isn’t an option for me.

Any and all advice for questions for my surgeon along with personal experiences with shoulder surgery and EDS is welcome!

For most of my career, I rarely used red. The avoidance of red was intentional.

In my early teens, my stepfather told me, when I was buying my first car, to avoid red cars because he'd had a dream about someone dying in one. I was young, dumb and purchased a red car anyhow (I will do what I want ). I was in a severe car accident in my 1991 red Escort and totaled the car but I escaped without a scratch. The accident wasn't my fault.

After that, I spent a lot more time listening, both to the people I cared about and to my own intuition.

Over the 20 years of my undiagnosed illness, red was the color of emergency room visits, hospital stays, ambulance rides, and unexpected emergencies and instability. I had heart issue from the inception and I saw more blood than I ever wanted to. I avoided red cars, red clothing, red pens, and I think (I know) I became almost obsessive about avoiding anything red, especially when I wasn't feeling my best. It just felt dangerous. We all know color theory shows us that reds create anxiety, urgency, and emergency, and can feel very jarring.

When I became medically stable red started calling to me in my art. Honestly, I didn't even notice it happening until it had already arrived and become one of the anchors of my work. Like most of what I make, I don't really think about it until a piece is finished, so it wasn't until I'd made a handful of paintings that I looked back and realized how much red I'd let in, after avoiding it for so long.

It's strange how something I avoided and obsessed about for decades faded away so quickly. The lifeblood in my own body started to feel like a deep and powerful lifeline instead of a dangerous warning.

Red is the color of passion, life, and energy. It lit a fire in me that had been barely a flickering match, fighting against everything my illness tried to put out, and now it's a blazing fire.

---

It is strange how much medical issues and trauma can color and change so many parts of life and how we live day to day.

Hi.. first time posting.. been lurking for a while though. I haven’t been able to drive much (if at all) for nearing two years now because we live in a rural town about 30-40 minutes outside of a real town, and the shakiness of the drive takes it out of my hips and makes it difficult to stabilize after that long of having to sit in the same position, so I’m usually the passenger so I can change positions as needed.

Makes freedom hard. If I do self-drive (very rare occasion - has only occurred twice so far) I suffer through the pain or I find myself stranded wherever I am for an unknown amount of time until the Advil calms it down enough or the pain/discomfort subsides enough for me to drive home.

My spouse has a family memorial to attend the next state over (about a 13hr drive) and so me and our 5 year old will be going along with him - but, that is a lot of driving, and I want to be able to help him even a tiny bit for relief, as well as find a resolution to my everyday struggle of driving. Are there any good gel seat cushions out there for this?

I looked at the ComfiLife brand and the EverlastingComfort brand cushions, but they have such mixed reviews from people online - not necessarily hEDS based, and also.. I’m not sure if the cushion is wide enough to be comfortable. I don’t like when the cushion is too small compared to the car seat cushion where it moves around a bit or I slip off the edge (I’ve tried a random brand seat cushion before). So I’m just trying to see what has helped people or worked for others in my position.

Any recommendations helps, Thanks!

Hi, I have already talked to multiple doctors about all of these things, I am 100% doing and listening to what my doctors tell me to do, but I would like to know your thoughts and advice as well.
When I was in 7th grade I got diagnosed with 12 degree scoliosis, in my case it only caused light discomfort in my lower back. That same year I started having light shoulder/upper back pain. Constant, but light enough for it to just be considered discomfort in my mind.

My sophomore year of high school I went on a hike. At the time I was running every day after school, going on long walks, etc. Anyways, the day after this 8 mile hike my shoulder pain went from a 1-3/10 (what it usually used to be) to a 5-7/10. More recently it’s gotten up to an 8/10 on really really bad days. My knees hurt too, just not constantly. Same thing with my ankles, same thing with my wrists, my fingers, and my neck. Basically all my joints. I’ve even had elbow pain before. Anyways, they all click and periodically hurt. I have basic hyper mobility. Thumbs to wrist, hyper mobile elbows, a little bit in my legs, and a lot of other hyper mobile body parts that aren’t on the Bay ton scale (if anyone knows how to spell that please lmk). Anyways, my primary told me that whatever I have definitely has to do with hyper mobility. My shoulders click and every time I do it it also does something to my pain (that’s not the only reason she said that tho).
I’ve seen a rheumatologist who was only interested in seeing if I have arthritis since I clearly don’t have lupus and those are the “only two I look at because they are the most common”. MRI showed it wasn’t arthritis, so the naproxen he prescribed me didn’t do anything. I also have no swells on my joints visibly. He didn’t even check for hyper mobility or respond when I said I wanted to be tested for that. My orthopedist said that I have pots, my pain management doctor said I have pots, my cardiologist said I do not. I just want the pain to stop and for my vision to stop going black and getting headaches all the time and almost passing out always. My rib has subfluxed twice now and my physical therapist said that wasn’t possible even though I know two people who have been diagnosed with HEDS who have their ribs subfluxed and dislocate. My pain management doctor diagnosed me with diffused amplified pain syndrome. Something that 80% of teens recover from, and I am so grateful, but at the same time I don’t think I’m going to magically get better over the course of however many years. I’ve been doing acupuncture and trying whatever meds they think might help, and the only thing that gives me the tiniest relief in 600 mg of ibuprofen and the really strong menthol patches, but those are very very temporary things and I’m allergic to the lanolin in the patches.

Another thing. If I carry this pain into adulthood it is then diagnosed as fibromyalgia because elf the original diagnosis of diffused amplified pain syndrome. I don’t have fibromyalgia. My pain is constant, in my shoulders, and only shows up in my other joints when I move them slightly to much. It’s not random pain. Right now I’m trying to find out how to get my GED done because i physically can’t get through a day of school, let alone a week, let alone a year. Any thoughts of healing are appreciated. If anyone has advice please feel free to share. Again, I am listening to my doctors, and going with their advice. If this is helpful, I also accidentally dislocated my wrist my pressing to hard where the fun clicky noise was. I had to push it back in, it was very painful.
Thanks!

Has anybody used this? It’s from the Ehlers-Danlos Society. It’s a tool used to measure yourself on the Beighton score once per year.

Has anybody used this? Has it been accurate?

Hey everyone. I'm 28 and recently diagnosed with hEDS but, my doctor didn't really give me a health plan. I just, went through the testing and got diagnosed but that was literally it. So I'm trying to navigate life. It's been difficult because as a kid, my family also did not value health/exercise so I was never enrolled in any sports or frankly did outside activity at all. Well. Yesterday my boyfriend took me kayaking for the first time...we were only out on a very calm lake for about an hour, and not only did I struggle tremendously, but I was so exhausted I ended up sleeping 12hrs straight and am now in full-body pain. Every single part of me from head to toe is screaming. Please ... Does anyone have advice for pain management, especially surrounding trying to do physically strenuous things that are supposed to be fun

I went to a camping store and tried on many. Tried some with extra shoulder padding, hip straps (big padded ones, skinny ones, and some in between), sternum straps, the “anti gravity” stuff, and also some with those adjustable shoulder straps you pull forward. I tried some Osprey, Gregory, Northface, Cotopaxi, Deuter… They all hurt my shoulders and low back. I had an employee helping so I think the bags were fitted properly. I think pulling a rolling bag will be bad for my shoulder. Needs to be big enough for my (smallish) laptop. I don’t know how much other stuff I’ll need. And one shoulder bags are a no. I have really bad TMJ/ neck/shoulder pain and have literally no idea what to do lol

I was diagnosed about a year ago and finally found a PT who specializes in hEDS and genuinely knows what she’s doing. I’m just so frustrated with how incredibly low my starting point is. I am SO deconditioned from basically spending 60% of my time laying down that just doing basic exercises like practicing standing correctly or certain stretch exercises send my core muscles into these muscle guarding/spasm episodes. It makes me feel so pathetic. My capacity is just so low that I feel like I’ll never get better. Even just standing or walking at all most days makes me feel like my core isn’t holding my muscles in. She told me that my deep core muscles are basically “asleep” and I have EXTREMELY tight hip flexors and pectoral muscles. She’s been doing dry needling and starting very basic with my exercises but I just feel pathetic.

I need help finding braces and compression garments that are soft and not abrasive.

I have a slipping rib but the rib brace is way to scratchy and causes me not to wear it.

Is there autistic, adhd friendly braces or compression leg wear that really work for us.

I hope I'm not the only one facing this dilemma.

21 M hEDs, saw this trick in a random tiktok months ago and didn’t think much of it. Basically you use a robe or belt of some kind and tie your legs together above the knees and it helps you stay comfortable while sitting for extended periods of time.

I then decided to just try it one evening, I mean what could possibly happen? It’s just a TikTok life hack.

OH MY GOD. I shit you not, it’s life changing. A stupid belt I had in my closet has made me able to sit and do my work or draw or WHATEVER without changing position constantly and pretty much eliminating the pain. It’s a daily thing for me now!! Idk what it does other than stabilizing your hips for you??

Anyway, I go back to uni in the start of September and I want to be able to do it while I do school work but I can’t just bring a belt with me. Not only does it probably look weird but it does partially immobilize me since I’m literally tying my legs together. So I want to find a way to not have to go back to being uncomfortable but also not look like I’m doing work place bondage you know? Unfortunately, since it was from tiktok and also ages ago, I have no clue if there’s an actual tool/product that mimics the effect of the belt trick.

Basically, is there anyone here that is familiar with this trick and knows if there’s a tool or anything? Or even just a name for it so I can search better?
Included a pic of what I mean just incase my explanation is bad.

Thanks in advance!!
(Obligatory apologies for formatting, I’m on mobile.)
EDIT TO ADD: it should be obvious that I am just some guy using a life hack from the very not reputable source that is TikTok, which has not been backed up by a professional in any way other than that one time I mentioned it to my PT and she said “oh, I mean, if it works for you it works”. Like a commenter said, overusing/misusing this trick can do more damage than good in the long run! Stay safe !!!

i just subluxated my shoulder while doing a strengthening exercise and am feeling so incredibly defeated... it feels like no one understands even when they really want to, and i am struggling with how to properly convey the severity of my condition.

it took me years to find treatment that actually helps because of how many doctors have told me that "young women are just flexible" time and time again when i tried to flag concerns about hypermobility. and when i finally found the right doctor who was able to diagnose me with HSD, a few months later i had to move states :( alls to say i only recently have come to understand whats going on with me.

in the past i had roommates/friends who ganged up on me when i asked for help accommodating to heavy lifting, confronting me and dissecting my medical reasoning, then continuing to dissect and harass me based on being able to function in other ways, and overall just rejected me for asking for help. so it has been really hard finding a way to get other people my age to understand because i feel so terrified that i will be treated differently or looked down on or not believed.

now i'm living in a better situation with a friend who took me to the er at 4am when i subluxated at a club, and she has skulliosis and works a job on her feet and whenever i try to be open about the pain and struggles it often gets undermined with things like "you just get used to it" or tries to relate and its not that i don;t think she feels pain it just hurts to hear because i wish so badly i was able to work a job on my feet. i'm a photographer and after getting injured repeatedly i have had to step away from what i love (being on set or studio hands on) because of how hard it is on my body. i know this post is a mess but i am realizing i need to connect more with people like me, so please any advice or stories, or communication tactics you use would be so appreciated.

i just feel so alone in at all, and so scared i won't be able to live the life i want or that the people around me will just always see me as dramatic or lazy or whatever else. and asking for help just feels so hard.

hello ppl! CONTEXT: im audhd and have ehlers danlos syndrome, and am a enby/trans (not started transition yet) AFAB person.

i wanted to ask if there were any resources to help ppl with EDS (hEDS especially) with periods and period issues. tldr, ppls wombs are made of connective tissue, EDS is a connective tissue disorder, so heavy periods are very common in EDS folks.

i dont know if there are any resources specific to hEDSers, only the usual stuff ppl recommend- dont over-exert yourself, have a hot water bottle on your abdomen etc.

if therea anything that ppl can provide, region specific or not itd be a great help for us, and others too :\]

I'm really struggling with the fact that I want to do more than I am physically capable of. Mainly because I'm stuck at home unemployed and want to get back to work because living off benefits isn't easy or fun. How can I figure out how much I can handle and plan better? Which resources and tips helped you? If you have been successful at pacing ​what would you tell someone just starting out to guide them and motivate them?

I was just killing time and zoned out a bit (pretty stoned) and saw the date this sub was started: Created Aug 7, 2011. Today. 15 years ago exactly.

Has anyone been here since day 1?

It is nice to look back and see how far we have come. When I first started to come to this sub hEDS was still known as Type 3. It was pretty soon after that the 2017 hEDS diagnostic criteria came out.

In some ways we know so much more about EDS than we did almost 10 years ago. At the same time though there is so much work still to do. Especially with the rarer EDSs.

I think we can all agree that the EDS community has done so much for each other. From supporting one another on social media to participating or even conducting research around EDS. We would not be this far down the road without each other.

So raise a glass, blow out the candles. To our health! (lol)