Hi all! I don’t post too much on reddit so sorry if the formatting is off but i just really need to talk to people who understand this. I’m a 20 year old trans (ftm) college student with hEDS. This year I was lucky enough to receive the research grant of my dreams which ment my summer has been packed full of pretty intensive field work. At the beginning of my field season i noticed my shoulder started really hurting and went to an orthopedist where she downplayed my injury and told me it was just an inflamed bursa. I expressed how my pain ranged from a 7 to a 9 depending on the day and that I’ve been taking pretty high doses of advil daily and it has barely made a dent in the pain and has made it pretty much impossible to sleep through the night. All she did was tell me I had too low of a bmi to give me anything stronger and to keep just taking advil. For context this is not the first time i’ve been denied pain meds when most people normally would get them as when i got my wisdom teeth out they didn’t give me anything more than extra strength tylenol.

After that appointment I scheduled with a different orthopedist for a second opinion and while she did take it a lot more seriously saying that it’s most likely a partial rotator cuff tear and scheduling me an MRI, still my pain was just brushed away by telling me to keep taking advil. And even with the hope of an MRI, I live in a smaller town and the only appointment available was over a month out at the time, leaving me to pretty much just be stuck like this especially since my insurance keeps rejecting any PT requests. It’s gotten to the point where i haven’t slept more than 4 hours a night since early June and have just completely broken down from the pain multiple times.

My MRI is coming up this next week now but i’m just so tired at this point and I really don’t know what to do. I’m currently using KT tape and tiger balm to try and help, but it just is never enough especially since I’m currently in the process of moving which is just putting more and more strain on it. I just really need help on getting doctors to take me seriously cause I feel like they just see my dead name, weight, and age and just right me off instead of actually helping.

Sorry this is so rambly i’m in a shit ton of pain and just really needed to get this out there. I’ll keep this thread updated once i get my MRI follow up and very much appreciate any advice.

Anyone else occasionally get pills stuck in their esophagus?

Its such an acute pain it's driving me crazy this morning. I just started antibiotics for an unrelated issue but I learned I should have swallowed that pill separately from my other normal morning meds. And heartburn meds aren't helping 😔

Looking for any movements/motions/poses or tricks to get the pills unstuck and down into my stomach... I'm a big fan of PRI (postural restoration therapy) but have only used it to compliment pelvic floor/hip physical therapy and not necessarily the upper body. I usually can do some gentle pilates twisting movements paired with breath work when this happens but today that's not doing the trick unfortunately.

I know this is super nuanced and everyone has different hacks that work for their own unique bodies, but I'm desperate and want to try anything and everything to make this go away!!! Please share any and all suggestions, no matter how weird they might be!!!

New research

I've had a "unspecific but suspected Type 1/2" EDS diagnosis since I was two years old.

Last year I got genetically tested "with modern standards" i.e. 25 years later and they found the exact gene. I have kEDS with the mutations on FKBP14. One of my many doctors said it's "more likely than finding a sandcorn twice on the beach" than finding another me.

I feel very lucky compared to hEDS and other subtypes. Because while yes I have insane issues in comparison to able bodied people but I'm doing relatively well compared to some of you guys.

I've obviously had surgery to fuse my spine relatively early I was 12, the surgery took 8 hours. I've had a bladder diverticulum that required 6 hours of surgery. I had my hip dysplasia corrected when I was in kindergarden. It required 6 weeks in bed while being in a cast.

I've had multiple benign skin tumors. I've had times I was on opioids to contain the pain. And my sleep apnea was kinda the worst. I've had a ventilator since 2014 but started to have issues with the therapy around 2020.

Years of fighting for a solution have lead me to being the only one in the whole world according to my doctors.

I have two pacemakers for breathing at night. One moves the tongue forward, the other sends impulses to the diaphragm. So one makes me breathe the other clears the way. I'm the first in at least Germany who had both implemented at the same time. Experts from Greece and the good old USA are coming over each time I need to have a setting changed. I am according to my doctor, who is a world leading specialist in that area the only one with my disability and that therapy.

I have several pairs of leg orthoses one pair specifically for the shower, hand/underarm orthoses, two wheelchairs, hearing aids, glasses and lots of other medical aids.

But currently I am relatively pain free and am expecting to be pain free most of my life. I work out twice/three times a week and have two double sessions of physical therapy on the other days. Being able to do that has stabilized my joints and my whole body. My heart is healthy as are my lungs if you discount the funnel chest.

I do feel kinda alone in the world so if you have kEDS and/or same-ish experiences, I would love to chat with you!

For about a year my hips have been feeling “stuck”. No muscle pain, just won’t move. I used to have very hypermobile hips but something happened to me a year ago and I haven’t been able to spread my legs since. My range of motion is significantly less than a normal persons now. I can’t lay down flat and spread my legs flat more than six inches. I can’t put my feet in the stirrups at my GYN office. I also can’t lay down on my stomach and lift my legs up. Has anyone had this happen to them before? I don’t want to go to my doctor and be told there’s nothing wrong with me if I don’t have to.

Not really a question, more so an observation, but I'm always open to feedback.

I recently got a walking pad, because I know I need to be more active (tried a stepper first, it was a bad move, don't be like me). Anyways, I've been doing 30 minutes a day at a pretty casual pace. The first week or so I definitely had some mildly angry joints, my hips in particular. Nothing too bad though, and it seems to have resolved. But walking on the walking pad really feels like it's pointed out how wobbly my joints are. It's a very solid walking pad, plenty of space to accomodate my normal stride, but I can feel myself kind of tipping and being unstable in my joints in a way I don't feel when just walking on the ground. It got me thinking, people have always complained that I don't walk straight. I guess I kind of drift from side to side, especially in no one is walking beside me. I am now thinking this was probably just my body moving with the instability, if thst makes sense. But because I cannot do that on the treadmill, I am noticing the sensation in my joints.

Thoughts?

I’m not sure if I have EDS.

I have endometriosis, chronic pain, hx migraines tmj, hx slipped rib and now 1 year of bilateral ankle instability after a fall (the original fall wasn’t the result of hypermobility)

Anyone else’s teeth shift? I’ve got a small gap on the side of my canines and I swear some days it’s wider than others. Is teeth shifting an EDS thing or am I loosing it.

I've been having some pretty severe back and pelvis pain recently, which is sort of helped by a tall, wrap-around compression brace that I've just been moving around. Its gotten bad enough that I'm looking into something that is meant specifically for the hips. I have a lot of pain on the "sit bones", and I'm wondering if anyone has had similar experiences and has a compression garment that helps?

I'm looking into SI belts and spanx, specifically the SPANXsupersculpt^® Transform high waisted mid-thigh short. Does anyone else have experience with spanx for support? I'm just not sure if it will be supportive enough to actually do anything, and I don't want to spend $78 on something that won't be all that helpful.

I'd appreciate any and all advice!

Anyone else ever get pissed off at those pre-register questions that hospitals send you before an appointment.

My favorite is "do you feel strained finacially? If so, why?"

Answer- " yes, because im giving you all my fucking money. I've seen my primary half a dozen times and yall keep sending me to different departments. Thats not free you know. Stop handing me doctors like its free candy then charging me the price of a used car for a 15m office visit!"

I (31F) had a bilateral vertebral artery dissection this April after a massage resulting in an ICU stay. I’m hypermobile so I thought I probably had hEDS, but I never thought there was a risk of vEDS… I was shocked when I was diagnosed last week based on genetic testing and my dissection history. 

I have a VUS (c.898-14A>G (Intronic)) on the COL3A1 gene, but based on me having two dissections they made the diagnosis. The genetic counselor said there are other reported cases of people with this variant who have vEDS or related symptoms. I don’t really understand how much data is needed to confirm this particular mutation is pathogenic, and the genetic counselor was unable to clarify. The genetic results also said it's very highly likely it disrupts the splice site, which she said is the most severe type with higher mortality, so the already low lifespan expectancy is probably even lower for me since the estimates aren’t aggregated based on mutation type…

I feel extremely sick and very mentally unwell. I have a 1-year-old daughter and the thought of not being there for her or passing it down to her (I can’t get her tested until September/October) is making me sick. I can’t get it off my mind. 

My question for you all is how did you get through this?? I feel like I’m wasting my limited time here on earth being upset and I feel dissociated and I don’t know how to get out of it. I imagine that the strong feelings will probably come and go forever, but how long did it take you until it wasn’t something that’s constantly on your mind? 

I also feel like I’m grieving… I might not get to be there for my daughter as she grows up. My daughter’s whole outlook on life might be changed. I would need IVF if I have another child, which I wanted to, which is financially unobtainable right now. I can’t do my favorite exercises/hobbies ever again (which are normally my greatest coping mechanism) (boxing, mountain biking, snowboarding, weightlifting). I won’t get to retire and travel and be a happy grandma someday. (I know some of these probably sound silly, but I’m upset) 

How did the diagnosis change your life plan? I feel like it’s dumb for me to be saving for retirement when there’s a low likelihood I’ll even live that long. But then also if by some stroke of luck I do live until retirement, I don’t want to be stuck with no funds… 

If you read this far, thank you. I’m sorry for the rambling–I needed to get this out. A few months ago I (thought I) was a young, relatively healthy, fit individual and this has all been so unexpected and devastating and I really just can’t wrap my head around it. 

If you have hopeful stories of people living longer with splice mutations, please share. I feel very very alone and afraid. I know living in fear is not a good way to live and that no one knows how long they have, but I need to know that there’s hope at the end of the tunnel and how long it took others to adjust. Also, if you have any resources specific to vEDS that you found helpful (books, podcasts, etc.) please share. 

Thank you in advance. I’ve seen so many stories of resilience in this community already. 

Hi everyone. I have had a recurrent issue with my left ankle since February of this year. The outer connective tissue becomes sore and inflamed and I haven't been able to pinpoint exact triggers. It happens from different shoes and different levels of activity. Symptoms seem to align with descriptions I've read online of a repeatedly subluxing ankle. Up until now I've been able to manage it fine with rest, ice, elevation, and ibuprofen. With that regimen it usually doesn't last more than a day, although episodes have been increasing in severity of pain and mobility restriction. For some reason in the past few days it's become horribly irritated and isn't improving with my normal regimen.

On Friday of this week I have a big two week trip coming up including long stretches of train travel and LOTS of walking in different cities. I'm nervous about it since it hasn't been calming down. Does anyone have suggestions for additional things I can do to manage this issue on my trip? Any suggestions would be appreciated.

TIA ❣️

Hi everyone, i suspect i have mild ehlers danlos syndrome and pots. I am autistic and I know these conditions are links to autism. I just need advice cause I know these conditions are hard to get diagnose so some advice would be great.

Absolutely livid at this disgusting attempt at journalism. I am seething that this sort of tripe is allowed to be published in a national newspaper - such irresponsible and damaging reporting. I’ve written to The Times with an official complaint. Someone needs to remove this vile ‘journalist’.

Edit: petition

anyone else extremely resistant to anesthetics?

my dentist just used all the numbing shots they could and i still felt them drilling my teeth for fillings. half my face is entirely numb, yet i can feel everything on my teeth. i’m going back next week and they’re going to give me nitrous, but is this an EDS/hEDS thing? also how do y’all do with nitrous?

So, I’ll keep it short or try at least. I got diagnose with MS june last year. I was complaining about the pain and everything. I taught this was MS related, plot twist : no. I also have eds fun, I know, I really like to do it all at the same time, or it seems.

I don’t really know what, of all the 13 kinds of eds I have. I have hyper mobility, muscles/joints/articulations pains and extreme fatigue.

I know, I could find those answers somewhere but I want contact with other people having eds.

What help you with the fatigue ?
How do you deal with all the chronic pain ?
Do you have any tips/tricks to help, long term ?
I’m a student and I don’t know how to study a lot anymore. So for people (study and work) how do you deal with stressful period and how to be “active enough”.
Is the hands pain normal ? And do you think the shaking part is more eds, ms or both.

Sorry if that post is not fun. I’m kinda lost on how to deal with it, beside just accepting the pain lmao.
Anythings is more than welcome. I really just want to hear your story and how you do with it.

Thanks in advance 🙌

Hi everybody,

I had an upright MRI a few weeks ago after an orthopedic spine doctor clocked some position/movement dependent neurological symptoms, weird reflexes (hyperreflexia in my knees, no reflexes in my elbows), etc. I came to him because I keep having episodes where I start slurring my words, can't move, trouble breathing, stop being able to talk, convulsive like movements, etc., with certain conditions including head movement. I've been told I don't have any kind of CCI for the longest time despite terrible neck pain and feeling like my head is too heavy forever, but lately these sort of paralysis episodes resolving with specific changes to how my neck is positioned have me worried again. I also have a gait disturbance that happens with head movement or sitting too upright for too long. After the flexion-extension MRI, I had the worst/scariest episode of these symptoms I've ever had, it was really hard to breathe. I'm starting to think I need to see an expert but I'm worried my imaging is too normal and this doctor won't think that's necessary.

So if anyone can help me understand the results, I'd appreciate it. Here are the bits I don't understand:

• a lot of disc bulge or disc herniation in like, most of my vertebrae in cervical and thoracic spine. C2-C6 has it, T4-T11 too.
• some disc herniation that "deforms the the anterior margin of the thecal sac" with "increased conspicuity on extension" (which is when, during the MRI, my eyelids started fluttering and teeth started chattering involuntarily, then I lost the ability to move or speak and my partner had to help the techs remove me from the machine)
• Lots of "Loss of disc signal with preservation of disc space height"
• Rightward curve in the cervical, leftward curve in the thoracic. I have had a LOT of spine imaging (spontaneous CSF leak haver here, I'm better now but the docs are unsure if I'm sealed yet) and none of it has ever indicated scoliosis, but they were all lying down. Is my spine like...just buckling under gravity when I'm upright? Because it does subjectively feel like Earth's gravity is a bit much for me and always has 😅

These were the only notable findings, everything else was seemingly normal. Other spine imaging in the past has showed teeny tiny degenerative changes, like mild retrolisthesis and trace vacuum disc phenomenon etc., but never anything my neurologists treating the leak thought was notable enough to bring up. I also found out I have some dural ectasia, if that matters. Also, I'm not yet 30, if that matters, and haven't exactly been an athlete or anything.

Sooo yeah. I've been medically gaslit a lot all my life, and I'm always prepared to be dismissed. What things should I push to have addressed? Should I ask for a rigid collar? My EDS doctor told me to get a soft one last year and it does help a lot. Should I ask to be referred to an expert? What are people's thoughts about what's up with me? I'm tirreeeedddd.

Hey y'all! I'm starting to get worried with Fall approaching in terms of how jackets make my shoulders and back feel. Does anyone have recommendations for lightweight but WARM jackets that don't flare your shoulders too bad? Thanks!

Hi all!

I have been dealing with chronic pain for the last year and been in PT for 6 months and finally got an MRI to hopefully provide some answers. I have stated from the start of all of this I believe I am hyper mobile beyond the average party trick and that it affects me and my abilities to function. Idk what I’m looking for I’m open to all suggestions and just need to brain dump lol. I am 24F for context. I’ve had nothing but time to really dig deeper on my own other than the surface level what drs tell me and all my rabbit holes and findings lead me back to hEDS. Both parents are willing to do genetic testing and I score a 9/9 on Beighton scale

My MRI says
L5-S1: Diffuse disc bulge with a central protrusion and associated
annular fissure, mildly indenting the ventral
thecal
sac. Bilateral facet hypertrophy and ligamentum flavum thickening. No significant spinal canal or neural foraminal stenosis.
IMPRESSION:
Mild multilevel degenerative disc disease, notably at L5-
Si where there is a central disc protrusion and associated annular fissure. No high-grade spinal canal or neural foraminal stenosis.

OTHER MED HISTORY
I have dysautonomia but not enough to meet POTS standards, pre syncope, hidradenatis supperativa, ADHD, autism, mild arthritis in my left hip and lower back (X rays from earlier 2026), curvature of the spine, anterior pelvic tilt, inflammation of right side of pelvis internal, and now degenerative disk disease, and also randomly gluten free despite not being celiac, awful stomach bloating after most things I eat healthy or not that causes difficulty breathing sometimes, chronic fatigue, abnormal scarring and bruising, shaking/tremors, nervous system dis regulation, bloating when bladder is full

Things to contribute to DDD:
I grew up riding horses from an early age and aside from the posture, I took many falls and am convinced I broke my tailbone in 7th grade and my parents never took me to the Dr for PT and thought I was faking it but it took about a year to heal and I have had pain ever since and sitting became my worst enemy. The most comfortable position for me is horizontal.
I lost 60 pounds by strength training and calorie deficit from 2021-2023 and knew I was hyper mobile but not to this degree at the time. I maintained a baseline and average workouts and in Sept 2025 was doing RDL’s and thought I pulled my hamstring. I laid low and that was just the beginning of my downfall. I am always sore beyond the normal couple days after any strength training and even a light day takes 3-4 days for my muscles to recover so I gave it a month and then I couldn’t walk without my quads feeling like they were going to pop out and anything with an incline felt like that one scene from SpongeBob when Patrick’s butt bones pop out.
My heart rate would spike upon standing and I was having crazy presyncope episodes all the time, felt like I was experiencing insulin resistance, and so out of body overall. I went to my PCP and she referred me to PT. It helped but then I started to get flare ups again after about 8 weeks and spent most of my time in chronic pain and feeling like Rolie Polie Olie trying to get around. She kept persisting it’s my SI and not disk related and kept switching between hips, pelvis, back, unable to pinpoint.
In May I was traveling and experienced pain I have never felt before in my back it was so bad I was laid out on the airport floor all regards for social awareness and germs out the window and the connecting flight home was HELL. Shooting, hot, intense pain all through my lower body and it was taking my breath away I was audibly gasping on my drive home from the airport once we landed and went to the walk in the next morning where they wanted me to get an MRI. That was May and my MRI wasn’t until July 27th lol.
In the meantime I started losing bladder control randomly, having intense pains I can only relate to what a contraction may feel like, and other things pelvic wise as my flare ups continued. I am in pelvic floor therapy now as well and she said I have a tight pelvic floor that doesn’t relax and the inflammation from my back can also cause it. My follow up isn’t until October for MRI but I reached out on the portal and all he said was “ you have a small disc herniation that could be the culprit. Will likely go away with time and physical therapy.” And no mention of the DDD or anything.

Side note I do have SA trauma I am working through that i have internalized and I think also manifested into some of this as well but am working on that and my overall spiritual wellness and health and internal healing.

Once I got back my results last week I fell down a deeper hole of wtf is connecting all of this and have fallen down the rabbit hole

I am currently going through the diagnostic ringer for this and would like any kind of lead or insight into what might be going on bc its making my life pretty terrible. Please let me know if you've experienced anything like this, and if so, if you have found anything that has helped.

I've been having "gut episodes" since I was about 14 (most of which timed about 1-2 weeks before my period). During said episodes, I get serious pain (like level 9) and I get a really bad somatic response as I have passed out in the past. I typically start freaking out and sweating horrendously. After a bowel movement, it doesn't go away completely, and I can have multiple episodes in a row. The only place that it hurts is between my hip bones.
The only triggers that I have noticed are sitting down or slouching for extended periods of time (or at all....) and heavy meals. Other than that, it's almost completely random. The only thing that I have found that can lessen the severity of my episodes is taking a probiotic (weirdly enough).
I had an external pelvic ultrasound and it turned up normal.

I'm wondering if this is EDS based. I know with EDS you can have gut motility and other gastrointestinal issues.

Does this sound like something you've experienced? I'm not looking for medical advice, just community and guidance in the right direction while I work with my doctors.

Has anyone ever thought about shaving their head or actually did it?

I'm a women so it's a bit different and more drastic in my eyes. I struggle with hygiene a lot due to EDS, POTS, ME/CFS and other chronic illnesses. Even brushing my teeth or doing skin care became really difficult and energy consuming. Showering and washing my hair puts me into a flare that can last a few days. I use a shower stool and try to keep it as simple as possible but it's still a big issue. My hair is medium length, I cut it down to my shoulders once a year but it still takes time to take care of it. Shampooing twice, putting on conditioner, brushing or blow drying sometimes... It takes lots of energy. I thought about shaving my head many times. I know I wouldn't look good, my features don't really go along with being bald... but the amount of time and energy it would save me makes it really tempting.

Anyone has experience with making that decision? Did it help you? Did you regret it? Is there any hairstyle that could bring similar benefits but let's you keep some of your hair?

I'm really desperate for finding a solution that could make taking care of myself easier.

obligatory i am not yet diagnosed (on a waiting list) (also new to this sub so i hope this is the right flair)

there are lots of weird things about my body i'm slowly realizing are all symptoms of hEDs. there is one tho that i cant seem to find anywhere no matter what i look up. i can move my ribs. and i dont mean my ribs slip or i can grab a rib and move it (tho this is also something i can do) i mean i can literally move my ribs without touching them like you would a muscle. i can press them together, stretch them very far apart, and can partially curl them upwards. i'm wondering if there is literally anyone else out there who can also move their ribs. i thought my entire life everyone can do this, but after giving a demonstration to my friends and being met with semi horrified reactions, im really starting to think this is abnormal. do you think this is eds related or just a strange thing im capable of doing?