I don’t know if it’s just me, but lying down is genuinely one of the best feelings in the world. It’s where I feel the least pain, my POTS doesn’t flare, and everything is supported. Getting out of bed is hard sometimes because I know the moment I do I won’t feel nearly as good.

No joke, my biggest fear is the embarrassment of going to the hospital for constipation. You guys, I came way too close to making this dream come true tonight. I have suspected I have impacted stool for a while now, my GI is slow af so it’s bound to happen. Doctors don’t have much advice beyond diet and exercise just like everything else. I do my very best at keeping my gut as healthy as possible but just like all of you, I’m not perfect. Stomach/bowel cramps started this evening then gradually increased over about an hour to this pain in my lower left that was right at the top of my level of tolerance. My 10/10 pain scale now has a higher bar. I wasn’t super concerned about the reason behind the pain, I could tell it was my bowels moving, but I was minutes away from saying this pain is too much. I couldn’t breathe, dizziness, nausea, hot flashes, the whole thing. And then the most glorious thing happened, I passed a fucking petrified turd the size of my fist. Ugh the instant relief! Im weak as hell and need some sleep, but I can’t even begin to tell you how happy I am to not be at the ER right now!

Seriously, why does the Beighton scale— the BASE test for diagnosing any form of hypermobility— cover so few body parts? I know that it shouldn't be exclusively used in order to diagnose HSD or HEDS, but a lot of doctors rely pretty much solely on its numbers and don't do much else to check, not to mention it being mandatory and irreplacable on the HEDS diagnostic criteria. My knees and pinkies hyperextend, and my back hyperextends but due to having extremely tight leg muscles—seriously, do they just keep forgetting that's a very common issue with connective tissue disorders?—I can't touch the ground without bending my knees. In fact, I'm pretty much entirely inflexible, where many of my joints can easily pass a threshold that my muscles completely restrict me from.

Anyways, thanks to that lovely fact my score is exactly one point below the threshold. I know that means they just ask you some questions and if you answer yes it still counts (which I do), but I'm not mad about MY score, I'm annoyed at how rigid and inflexible the test itself is. How is something like being able to pop your joints out of the socket not considered part of that criteria?? What about ankle flexibility? How far the spine can bend backwards? Why does it effectively narrow a disorder that can affect ANY of the joints in your body down to only specific movements that some of them can or can't make? Why is it that there are NO other tests, checks, or questions on the official diagnostic criteria if you fail beighton's? If my knees don't hyperextend past the 10° they need to, am I simply going to be stuck with no medical support for the constant subluxations, chronic joint and muscle pain, and every other common symptom that is STILL not listed on criterium A (Seriously, how are spinal and orthopedic issues not on that list? That criteria can also lick my balls.) for the forseeable future? I'm barely 18 and have the physical challenges of a 50 year old, I literally have carpal tunnel and toes that don't bend the right way (which HURTS). That is not something I want to continue experiencing with no mobility aid or physiotherapy coverage, I'm already broke.

When I (22F) was 14, I started to get horrible right hip pain where I felt like I could barely walk. Soon after, I also got pain in my left hip. My high school campus was big (we had 7 minutes between classes), and I could barely make it to class because I was limping so bad. I asked my parents to take me to the doctors and they did x rays and found nothing wrong. They told me to work on my core strength, and I did. I started working out and the pain didn’t go away, my hip kept slipping out of place and I had no idea. At that point I was so depressed from the pain, abuse from my first BF, and my parents’ separation (they separated 3-5 months after the pain started) that I stopped working out, and had to start therapy. My parents continued to dismiss my pain because of their failing marriage and business. My mom had a friend that needed a place to live until she could get to a new job. She actually picked up a lot of the responsibilities of me and my younger sister. I was in 9th grade and this was the first time I ever had a packed lunch by my caretaker since I was maybe 9 (4th grade). She listened to me about my pain and did research and offered to get me what I need to help the pain. She got me a hip brace and turmeric supplements which surprisingly helped a lot. After I turned 18, that’s when the cascade of other issues started. Migraines, dislocations, falls, hiatal hernias, POTS, deteriorating mental health.

Fast forward to this week, I met the first physical therapist who truly understands how deep it goes, and struggles with it herself. After talking with her and thinking about my medical history, I had many realizations. The main one being my hip. I went on Facebook earlier and I’m in EDS groups there too. I came across a post of someone showing their hip doing the same motion that mine has done and asking what was happening. All of the comments were saying snapping hip/ subluxation. And I just wanted to sob. It makes a lot of sense because I have had 24/7 SI pain for years as well. All of the doctors and family who dismissed my pain. I am so enraged, yet relieved that I know what’s happening now. I will bring it to my PT and PCP to see if I can get some assistance and scans to see if there’s damage. I am grieving for all the pain and dismissal my younger self has endured. I would love to hear how any of you have coped with grief from your medical issues. Thanks guys ❤️

I can't even spend a few hours walking downtown without spraining/breaking an ankle. Today, all I did was step wrong off a curb and my ankle is fucked, I scrapped my knee (what am I, 9 years old?) and scrapped/ bruised my elbow.

Last time I went downtown, I broke the other ankle. I'm so frustrated.

Every now and then, without warning, I get severe muscle cramping on my entire right side of my body. My left side is completely fine, though. On top of it, I get a severe migraine and feel nauseous. I just had my second spasm this week about twenty minutes ago.

I was wondering if anyone else had the same thing.

I didn't know I had hEDS until this series of events happened... (37F)

My question is, have any of you experienced issues with your ulnar nerve, carpal tunnel, and de Qervians tenosynovitis all together? What did you do to help it? Currently, it's in my left arm but this is my second round dealing with this problem except the last time was in my right arm and I had no idea. Context below: So last year in September 2024, I suffered an injury to my ulnar nerve in my right arm after I spent a couple of months crocheting off and on every day. At the time I did not know that, I was out in my yard actually and I reached out and felt a pop in my bicep area and shoulder but it wasn't a joint pop... It was different. And I had felt it before, and the last time I had felt it I was told it was tendonitis. I made an appointment, and went to my doctor who referred me to a specialist. Living in the area I do, it's hard to get to a specialist and I wasn't necessarily wanting to try taking neurontin for the nerve pain because the last time I did the side effects were not so great, on top of the weight gain (I struggle with my weight and I recently have lost 100 lb on my own so I'm not willing to gain more) so I did what I could with CBD, and a tens unit and all of the other things like that. Also, I work as a housekeeper, for a large company and have always had super physical jobs like that. My body is constantly going through sprains and strains, and I've had carpal tunnel surgery in my right hand. Turned out my mom had hEDS, undiagnosed but with all of her other health issues, when my doctor was going through my history and I started mentioning some of that it all fell into place. She passed at 63 from CHF. Turns out he thinks my 12 year old son has it, as he was at the appointment at the time and was able to do some basic flexibility testing, etc. Another question I had I guess is, after finding all of this out after both of my parents have passed, in the short amount of time that all of it happened, how have all of you managed? What kind of jobs do you do? What keeps you from feeling like no matter what it's hopeless sometimes? I watched my mom fall apart for years, and no matter what she did she was always in pain and she could barely move without being in pain. I try to be the opposite of that, and I'm still in a lot of pain but I worry. I'm beginning to have some of the same issues she did.

Hi! Would anyone be willing to share their own experiences, good, bad or in-between, specifically with electrolysis with EDS with a lot of skin involvement please?

I have lean PCOS and hirsutism, but my skin is incredibly soft and velvety (like a baby) and hyperextensible. Marks last for a long time. Laser is not an option due to previous hypertrichosis, nor are other hair removal methods for various reasons. I can’t take spiro due my comorbidities, and various supplements don’t work after months of trialling.

I’d love to hear about experiences of electroylsis on the face, but also other parts of body, as well as healing times and any specific extra steps you may have had to follow.

Thank you 🙏🏼

i have the symptoms of restless leg syndrome but its my whole body. im sure im not the only one has anyone experienced this and more importantly does anything help?

When I first started having joint pain and general health issues my mother told me “have you tried cutting out gluten” and I audibly laughed. The year continued on and as I got worse and worse she seemed to be more and more understanding but would still throw in an occasional “maybe it’s what you eat”. For context I eat very well for a broke 21yo, my mom is just a full on almond mom. I was being fitted for a wheelchair and she still managed to bring up food?? like clearly the food has nothing to do with all my ribs popping out and not being able to put any weight on my right side. This has died down over the last few months until this morning. I got MRI results back that show I have degenerative disc disease and some pretty herniated discs that are pushing into different nerves. My mother then texts me about different solutions and puts “maybe a diet change?” like WHAT THE HELL! I just don’t get it. She is very fitness-y and I think she’s truly more scared of having a not skinny daughter than having a disabled one. INSANE!! Anyways just wondering if anyone else has had anything like this and what tf they said or did to get it to stop.

EDIT: adding a few things. I have brought up the diet thing to both my pain management doctor and rheumatologist and both of them agreed that just “eating well” is best for me and neither believe I would benefit from any kind of strict diet (cutting out gluten or dairy etc)

My mother is general has gotten a lot better at understanding my issues but also still recommends running (?) when i can’t walk and different seemingly impossible work outs. I think a lot of it is her fear of me “letting myself go” or “giving in to my disorder”. She has some fundamental issues with bodies and food and ableism that are definitely contributing.

I do not live with her and live across the country, she thankfully pays for my medical things and thus asks me about them every single time we call

Anywayz glad that I am not alone but also sorry for all of you who also have a parent with a “solution” to your “problem”. big hugs yall

Does anybody in this subreddit have CAH-X or is familiar with the condition? I'm fairly certain congenital adrenal hyperplasia runs in my family, a lot of people on my mom's side have numerous symptoms of salt wasting CAH. But, I'm the only person on both sides of my family is that has symptoms of hEDS. I recently found out what CAH-X is, and that it's chimerism that causes you to have EDS along with CAH. I've discovered I have a few signs of chimerism, and that this would likely explain why I'm intersex and also why I'm the only person with hEDS in my family. Just wanna know if anybody else knows about this, it's been wild to figure out. I'm scheduled to see an endocrinologist in June to get a bunch of tests ran and figure out what the hell is going on and what we need to do for me medication and hormones wise.

We haven't figured out my type yet, other than it's not rheumatoid.

I've had it for as long as I can remember, since at least age 6. It's primarily in my hips and neck but it's also everywhere else..my shoulders, elbows, wrists, fingers, spine, knees, ankles, feet, and toes. I saw polyarthristis in my doctor notes but they haven't said anything about it

Hey I am debating if I want to move countries. I am wondering in which countries does the public health insurance cover physiotherapy to the extend that someone with eds needs it. Are there countries where all is covered ? Or at least the most of it ?

Hi all,

I’m new to this sub, was diagnosed with Ehlers-Danlos a year ago and I am a 36 year-old female. I am not your typical EDS, my skin is not super saggy or crepey. However, I met enough of the criteria to be diagnosed. I also have hip dysplasia, pots, mcas - all of the comorbidities. The MCAS has been much more of an issue than the EDS. But, even prior to last year, I was aware of my hypermobility (I just thought I was super flexible though). I can pop my shoulder joints in and out and my thumb as well. I have torn labrums in both hip and shoulder.

My question is, at what point did you start having neck and upper back issues? I started getting migraines that I thought were unrelated , but then I realized my neck and upper back were so tight and I got them dry needled and it helped. But then the littlest thing, like trying to wrangle a toddler with my arms while they push me away , messes it back up again!

Do you guys also struggle with finding a miracle drug/supplement only for it to stop working or your body seems to adapt to it fairly quickly?

Hi all! I (22f) have Ehlers Danlos and a ton of comorbidities that go along with it. Because of this I’ve been having a really hard time keeping a job because of how often I get knocked down and stuck in bed, I’ve decided I need to find a job/career that I’m able to do from home. I’m considering going back to school and getting a degree in accounting but I’ve gotten mixed responses on if I’ll be able to do that from home and if the workload will be too much to handle. I really don’t know what I want to/can do so I’m reaching out to the EDS community in hopes of hearing what you do for work and how manageable it is with your conditions. Any advice would be greatly appreciated, thank you!!

I’m on the third day of steroids and my severe pain in my hips is just… gone? This has never happened before. I’ve never had a medication work for my pain like this. It was like when I started Latuda and my intrusive thoughts suddenly went away.

It feels like there’s a hole where the pain was. The one downside is that now that the severe pain is gone, the rest of my body feels like it’s been run over by a truck. But I can sit and stand without excruciating pain. All because I went to a doctor who listened to me and cared sincerely about helping me. All because I got the correct diagnosis.

I know it’s gonna suck when the steroids wear off, but as far as I know, the fact that they worked means the pain was autoimmune in nature, right? I’ve heard that steroids don’t often work on Fibro. Correct me if I’m wrong, please! I’m still learning.

Anyway, I’m enjoying the decreased pain. I’m in shock.

hello there!!! i am not diagnosed with EDS, but i have very hypermobile finger joints (and other joints not noted here). i recently bought two packs of oval 8 finger splints to help stabilize my flexible problematic finger joints (PIP joint in middle and ring fingers on both hands) and to reduce pain when i write (i'm a college student. no further context needed). i was wondering if yall could help out with some questions i have!

1. how often do i wear these things? i have been wearing them 24/7 except when i shower, but i'm worried this might be too much

2. how do i clean them? some skin has been sticking to the plastic, making them look kind of dirty (i bought clear splints to make them less noticable)

3. what are some tips for dealing with joint pain in the hands? tylenol never seems to help. i also tried compression sleeves and they kind of helped?

4. are you able to wear rings with your finger splints? i tried to wear my class ring recently with them but it was admittedly difficult. i love wearing rings and it'd suck if i had to forfeit that for no joint pain

thank you so much in advance!! i really appreciate it!

Has anyone successfully gotten mounjaro covered by insurance for EDS symptoms? I have POTS and mitral valve disease and after getting weak from heart failure and surgery and gaining weight fast my joint pain (feet especially) is completely overwhelming and my health is spiraling out of control. PT did not help at all and I usually really benefit from it! I noticed even +10lbs I had significantly more joint pain and injuries and now Im +30lbs and the only positive I can find is my BMI is high enough to potentially be covered for these drugs. Do I really need to go further to be helped?!?! I cannot be trapped in pain at home like this.

I heard so many encouraging things about reduction in pain and inflammation as well as help with hormones (I have likely PCOS never assessed and PMDD) but I also have some stomach issues and mounjaro/zepbound has less side effects.

My insurance will not cover zepbound point blank but can be convinced to cover mounjaro. Anyone have success? How did you argue it and what did you put on the prior auth?

Hi stretchy people. Did my doctor do me dirty?

I 22F saw a rheum a while ago. After examining me, he concluded that I have benign joint hypermobility (I know this is an outdated term, which was my first red flag) or as it's known now, HSD. I then tried explaining to him that my symptoms go beyond joint involvement and I have full-body issues. We spoke about hEDS as well as other disorders on the spectrum and he insisted that it was "benign", because "you're not ripping in half like I've seen with patients much worse than you", even though I VERY CLEARLY had additional symptoms. Out of curiosity, I checked the hEDS diagnostic criteria and I meet ALL the requirements. Do I go back to the doctor or just accept what he said that "it's treated the same anyway, so why bother"?

im 23 and in complete hell. i tend to avoid groups like this. i'm miserable, you're miserable, we're all miserable. makes me pessimistic. so i'm looking for anyone who has been in disabling pain who has gotten better and got their life back. tell me your success story

Does anyone have a lot of guilt for dropping out of events and such due to chronic pain?

Chronic pain fluctuates daily, and thus can often be unpredictable for days ahead. Some of us can prepare all we can to make sure our body and mind is able before an event. However, that's not always enough. I find there's times, despite everything I do, I'm still out of energy or in pain. I end up contacting friends/family day of, saying "sorry I can't make it". It feels unreliable and people tend to see it as a cop out. Plus, the more I explain in depth about why I can't go, the more it feels like an excuse. I find myself doing this more and more because I prioritize necessities. I.e work, chores, grocery shopping, the basics. By the time everything I need to finish is done I have no energy left for the people I care about. Typical solutions, like meeting someone halfway or having them come to me, don't quite work. I live an hour plus from family/friends, while all of them live in the same city. So it feels assinine to ask them to meet me, especially when they all live less than 5-15 minutes from each other. Chronic pain is a spectrum. Almost everyone feels and treats it differently. The same way everyone with chronic pain gets treated differently. I'm a younger gal, so any "excuses" I give are treated as laziness. Mostly by my other chronically ill family members. The very people I once went to for understanding and compassion. I'm aware there's more to this dilemma than chronic pain, some of it's the mental toll of chronic pain, some of it is the people. It just feels like any effort I put in is never enough. Like I abandon everyone because I’m being “selfish”. So I wonder if anyone else has felt this way? Do you find that family and friends make an effort to understand?

I am turning 30 this year and still walk on my toes. Any other adults do this and what has helped?

(23 M) Straight out of highschool I went into a tool and die shop working toward my journeyman's card which usually kept me pretty active moving and lifting parts around. About a year and a half ago after earning my card, I got a desk job at the same place in quality control. My lower back and shoulder aren't killing me nearly as much as they did when I was on the floor, but I find myself getting headaches and upper back/neck pain a lot more often now just sitting at a desk for hours staring at a computer screen. I honestly don't know which is better for me as when I was on the floor I was at least getting exercise and keeping my muscles in shape. Any of you guys find yourselves falling apart after switching to a desk job from a more active manual labor job? Anything that has helped you resolve some of the pain? I've been trying to be more active outside of work again but it's hard because I'm usually so tired.

Hello! I (24F) am on the journey to find out what the hell is going on with my body as many others here, and i’m fairly certain its some form of EDS. I just saw a Rheumatologist who was able to confirm my symptoms are not autoimmune related and confirmed most of my joints are hypermobile (even those not on the Beighton scale). However he said they cannot diagnose me, but based on my presentation and symptoms said its entirely appropriate to continue forward with EDS testing, so they are giving my doctor the go ahead to refer me to Good Hope EDS clinic in Toronto.

I’ve heard mixed things about the clinic, and i’m a little anxious about not being taken seriously or being told I’m so close to meeting the criteria but not quite there. I KNOW so many things are wrong with my body and I really can’t handle being dismissed. My folks live down in Dallas and i’ve considered getting testing done and paying out of pocket but I don’t feel safe enough to go to the US right now, so I wanted to get some opinions on Good Hope on whether or not its worth pursuing to begin with or wait until I can get testing done elsewhere.