Hypermobile EDS Diagnostic Criteria 2017 

On this episode of: what might possibly be wrong with me

After a lifetime of being told "i'm fine," "it's all in your head," "you're imagining it," "you're so negative all the time," I finally found out that I have EDS. Thank God for one human being that cared about me and wanted to help me after all these years. Just knowing that I do in fact have something that has caused me pain and grief my whole life, and I'm not crazy, was the blessing and comfort that I needed.

just an fyi for all the people self diagnosing in the comments. you dont always have to have to have hypermobile joints to have eds and having hypermobile joints does not mean you have eds. its just means you hypermobile

Anyone else stumble upon this and not know what EDS is😂😂

i just have weirdly flexible hands i think

I clicked on this video thinking it was about eating disorders but this was very interesting and educational

I know I’m hyper-mobile but not sure I have Eds. I passed this but still not sure

I'm a genetic counseling student and found this video super helpful for understanding the EDS diagnostic criteria. Your channel is such an amazing resource for learning about the experience of living with EDS + comorbidities. Thank you so much for posting!

Im researching EDS for an assignment, and every single person with it on the tube is gorgeous lol

I was diagnosed with hEDS last Monday. I was at a rheumatologist and they checked me for RA at first and then I started to explain all the pain I've felt since I was little. All it took was one amazing doctor to listen to me, a doctor who finally wasn't saying, "It's from your fibromyalgia, Celiac, all your past dislocations, bone breaks, etc". In a way it felt good to have a name//label to what I've been dealing with. But people w EDS honestly suffer. The pain, sublaxations (hope I spelled that right), and dislocations hurt A LOT. Also all the other things that come w EDS is scary too, depending on the type you have. I'm very happy I stumbled upon this video

I pass almost all of the criteria, but my doctor refuses to try to test me for EDS. It is very frustrating, I did not even know about it until an urgent care doctor mentioned I may have it

It should be noted that this is only for hEDS not all types of EDS. The distinction between clEDS and hEDS is small but very important; just like the distinction between cEDS and clEDS and hEDS is also very minute but a major point in diagnostics. I have been given a preliminary diagnosis of EDS from my doctor and am waiting months for yet another doctor and more tests in order to figure out if I have clEDS or hEDS. This has come after 12 years of problems and being tested for rheumatoid arthritis, lupus, and a whole host of other disorders. To people in comments: Please don’t just self diagnose. EDS is weird as shit and there is a reason it took doctors 12 years to make the conclusion in my case.

My sister, and daughter (16) and I were just diagnosed. My sister and I were misdiagnosed with fibromyalgia. We’re both over 48. So thankful there’s a lot of information. And we were NOT hypochondriacs!

😅 I’ve been able to touch my thumb to my wrist my whole life. No pain 🤷🏼‍♀️ It didn’t come into conversation often when I was at school, so I didn’t realise it was quite unusual I just thought my friends hands weren’t as flexible as mine. I can bend my pinky back as well but again it never came up in conversation so I never realised it wasn’t “normal”

I'm 63 and only VERY recently was diagnosed. I lived a lifetime of dislocations, sprains, constipation, IBS, anxiety and depression, plus I can do the Gorlin sign, and many men over the years have complimented on my super soft skin! It took a fabulous family physician taking the most complete medical history of my life! AND, then, he took my son's history. My son was tested for Marfan (negatve; whew) but he did have Osgood-Schlatter, kyphosis and scoliosis, and joint pain. I "passed' nearly every one of the criteria on this young lady's great video except for a few that I used to could do but got too old! LOL However, my son can do nearly all of them. I bruise super easily too and my knees? SUPER flexible ... looks like a ostrich legs! Just KNOWING it's something is a relief! It's NOT in my head, and it's certainly not in my son's head. WHAT A RELIEF! Of course, he can get a genetics test, whenever he can afford it. I'm too old, ie, past childbearing years so need. OR .. so say the docs in Alaska where I've lived for the past 40 years. Not great medicine up here, trust me on that!

You're like a friendly doctor. Very informative and thorough. Thank you and all the best on your journey.

I always wondered what was wrong with me till my aunt and parent were both diagnosed, and finally understood the constant pain and hyper flexibility. It was a relief to put a name to it rather than 'I have lax joints'. I really enjoyed this video, and have learned a lot more that I was not aware of.

I actually got diagnosed with EDS last year and I kind a wish I found this video sooner because it would explain so much that weird things that were going on but it’s nice to see someone to tell people what this condition is because it’s hard to explain I find so thank you

Me: Definitely doesn't have EDS *Takes EDS test anyways* Me: "I have EDS"

Hi Izzy! I just wanted to let you know again how much I appreciate this video! I’ve recommended it again to a newly diagnosed EDSer! U r conquering EDS fear and giving strength with just this ONE video!! 🥰

Thank you , Izzy. This is so helpful. My daughter (aged 19) defn is hypermobile and some doctors "suspect" she might have hypermobiile EDS , others say it is "hypermobility". In high school she developed POTS - thats what made me start to look at EDS. I'll show her this video with the NEW criteria and go from there.

After several years of chasing mystery illnesses, my daughter, who had just turned 17, was finally diagnosed with not only EDS type 3, but also Lupus (due to the blood condition that goes with it) and PCOS at MAYO clinic in MN. We were just so thankful to finally have a diagnosis to her aches and pains, and weird blood work, and it'sall in you head or it'sjust a virus. Every one of my kids has some variation of EDS symptomology, but she is only one officially diagnosed. Helpful video, nice public service.

Thank you so much!! Its a relief to know that I just have weirdly stretchy skin and not EDS. My heart goes go out to everyone struggling with it though, I send my best wishes and love! You're all amazing I hope you have a great day 💕💕

This description is the absolute best one I've heard. literally going trhough ur videos right now and bindge waching then hahahah

Maybe I’m the only one who sees it but you look a little bit like Claire Wineland

I’m not sure if I’m just hypermobile, I was diagnosed with that as a teen, I had severe hip pain/crunching and was “diagnosed” simply by a surgeon putting my thumb to my wrist like you said.. it’s now been 8 years since then but received next to no therapy for it, basically I got palmed off..they said they couldn’t help my hips however I passed allot of these, especially the dislocations in my hips & shoulders without prompting. I feel like my doctors won’t take me seriously going back about it, it’s so exhausting having an issue and feeling like no one is taking you seriously. Making you feel as though you’re a hypochondriac. Thanks for the informative video Izzy

Thank you for this. My son's ortho surgeon discovered he has a high likelihood of having EDS. He is 25 yrs old. I never thought twice about his hypermobility growing up.

Thank you for posting this! I've been going through doctors trying to find someone to help me out for years, and now that I know more about the process of a diagnosis, it's very helpful!

Literally didn’t know it was weird for your thumb to be able to touch your wrist until I made my friend almost puke in fifth grade 😂 low key could also touch my pinkie to the back of my hand too 😬

why am i watching this i’m literally fine

This video helped myself and my EDS family break down the actual scale into more than just flexibility and helped me get properly diagnosed. Thank you so much for this video. It helps me get a foot in the door for better care

Izzy, PLS never take this video down! I STILL refer to it and pass it along to others! Ty again for helping me!

This explains a lot of things I’ve been dealing with my whole life. My jaw dislocates extremely easy (yawning, eating and apple) and my ankles dislocate as well, just by laying in bed and relaxing my feet. I have to prop my feet upright in the correct position or they dislocate just by gravity. Both of which are very painful. I’ve also been what my Mom and Dad called “bendy”, lol.

Wow! Thank you so much for this video. For most of my life (I am in my 40's) People have asked my why I am so hyperextended and other weird things. I also have had some issues with treatment related thing (I have cancer), that my nurses have asked me if I had EDS or some other mobility syndroms. I really never knew what it was. But many youtubers have opened my eyes to this. But I still never knew what the criteria was for these syndromes. And after doing the tests you mentioned, I am definatly a candidate for someone with these syndromes. And my children are also. Now I know what to ask my doctors and my childrens peds, what to test for. Thank you.

So my life came crashing and burning down around me when I turned 13. I gained sever stomach pain, joint pain, exhaustion, and various other problems that I took to doctor after doctor. They'd run some tests then when they couldn't find anything... they gave up. Or told me I was faking, or told me I was just looking for attention. Or that I just needed to see a mental health doctor that it was all in my head from years of trauma. Then, my mom comes across a short on tiktok talking about this thing that is comorbid with autism and can cause all the problems I've been having. The fainting, the stomach aches, the aching joints, the random wrist pain, shoulder pain, back pain, knee pain. My horrible temp control where it can be 84 in my room and I'm wearing a sweater because I won't stop shivering and sweating at the same time but don't have a fever. Your videos, it was your videos that helped me know for sure. Listening to you and your friends explain things they had a kid that they over looked, that everyone over looked. It blew my mind. It was like listening to all the problems or weird things I had as a child and going "oh shit that all make sense now" Taking this test and passing all the cut offs, listening to all the things you have to deal with and going "shit me too. Shit I'm not alone. Omg.... I'm not alone." Man I started to cry, like, ugly cry. I am... 30 years old, 30.... I've been dealing with this for 17 years. 17 years of doctors saying I'm faking, there nothing wrong with me, they didn't find anything. It's all my head. And finally.... after 17 years of suffering, of pain, of agony, of thinking I'm going nuts just because I'm hurting and that I'm losing my mind. And then a tiktok.... and your videos.... changed everything. It was like opening a door to a whole new world... A world where I have hope that I can actually be treated... not cured. but at least treated.... That maybe, just maybe, with proper help. I might be able to live a somewhat normal life again. I can't help it, I'm crying again oh gosh. I just wanted to say thank you, thank you so much for making these videos. I tried youtube, I know the effort and time and work it takes to make these. Thank you.

Thanks for a very informative video, Izzy! Many of my grandkids have EDS symptoms, my sister has been diagnosed, as has her daughter (my niece), and I have many symptoms as well. I'm in the process of being diagnosed-waiting to see a specialist in Boston. I did not know about the new criteria, so thank you very much for bringing that info out for me to discover today!

My goodness watching all of this makes so much sense. My mother went through so many dislocations in her life and told me and my sister “Hey your arms could dislocate, it’s normal in our family”. Never looked much into it but took her word. Fast forward to being 25 years old and I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) years ago. I ask more about what happened and she gives me more symptoms described in this video. I go online to RU-vid to look at people who have POTS like I do and I see the acronym EDS. What is that? So I go online to the wiki and my god it’s everything me and my mom have gone through. Go to a doctor and he confirms my suspicions. I’m sorry this is so long but people shouldn’t also have to WAIT this long to understand that you have a medical disorder. I thought I was just “special” and I just functioned differently. Turns out I have a genetic disorder that no one in 25 years knew what I had. Insane! Thank you for posting content about this disorder, not many people know about it, and since I’ve been one of the “firsts” in my rural hometown to have it, many other people have been diagnosed because of talking about it. Thank you thank you thank you! Hope your journey goes well and both our bodies try to “stay in place” ;D

I’ve always been told by other handicapped friends to get tested for EDS since it’s going about 7-8 years of chronic issues and little to no answers but since I’m underage I have to ask my parents to take me to doctors for testing. I always feel like I sound like a hypochondriac whenever I tell them about new issues oof.

Nicely done! you went through the criteria in such an organized manner! Thanks

My daughter has all of this. OMG. You have set us on a right path with both POTS and EDS. I will fight to find a Dr to test for these. Thank you

Do they mention contorting into weird positions in sleep

Lol I got 9/9 😂😂 (I don’t have EDS tho, I have Stickler Syndrome)

Izzy, I want u to know how much u have meant to me n my EDS life! After seeing this video, u gave me the courage to b tested. I have been dx’d with EDS. I have also sent your video to at least 6 family members so they could either understand my dx or so they could seek a dx for themselves! Ty! You have made a difference n my world and u need to know how much I appreciate you! May your day b filled with many smiles and many spoons!

I pass a good portion of the criteria, especially the pain ones 😣. It would explain so much if a doctor does indeed confirm it for me. Thank you so much for this video! These kinds of videos have helped me in narrowing down what i could be dealing with so much.

So I was watching this as I’ve been looking into EDS (hEDS specifically) as a couple people I know have said they think I fit the criteria but they’re not sure. I wrote it all down as I’m seeing a doctor, I just wanted to compose a list before I went as I find talking to doctors to be somewhat difficult and i find my results to be pretty interesting. 8/9 for criterion 1, 3/3 for 2 and a pass for 3. Thank you for making this video to bring awareness, and also to help people who may be in a similar boat to me, wanting to compose research before going to their doctor! Have a great day/night/evening

Ive never seen anyone's ankles do what mine do and roll inwards until now 😭❤ Also thank you so much for this I have an appointment next week and I'm so scared of being ignored or brushed off this is so helpful xx

First I want to say, you’re so beautiful and smart. I love how real you are. Secondly, today I went to a new doctor and she has EDS and thought that I also do as well. I’m watching this video and wow, I can do like half of these things. I’ve gotten like several points and I am just so shocked. Been in this body for 17 years, how could I have not noticed this??? When I was 12 I would do this cool wavy thing with my hands and I saw a classmate try to copy me. I know no one who can do that. And I can do this weird thing with the tip of my fingers and poke them a bit out if it makes sense. I’ll keep you guys updated and let you know if I actually have EDS. Thank you so much for this video, extremely helpful. I hurt so much so often, and it started right before I turned 14. Being told nothing is wrong and being brushed off, I knew something was wrong. I think my mom, sister, and grandma may also have this. My mother was diagnosed with a connective tissue disorder but they didn’t say which one, but she also has a bunch of other medical conditions such as autoimmune disease. My sister is flexible and was told she has “floppy joints”.

I was diagnosed with hEDS then just left to deal with it, discharged without any further information or anything; watching this and other videos about it has been super helpful and I am waiting on a referral to a specialist who can confirm the diagnosis and give me some better details on what to expect etc (I am already in a wheelchair when outside most of the time). Best of luck to you and thank you for the video, it helped me to show my mum what the criteria is.

Thanks for making this, it's very informative! Criterion A was a breeze, but B and C not so much. I have celiac and have a rheumatoid factor, but have had lots of hypermobility issues as long as I can recall, such as 9 ankle sprains and hips dislocated regularly as a teen. Working on finding the answers.

Why have I never thought to search my own disorder on RU-vid. Been feeling so alone over here.

You are a freaking rockstar 🌟for this! I had searched for something like this before but must have missed it ,but luckily I recently started following you and am just now going through your old vids and found this gold right here !🤗🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓

I am honestly crying right now because I have been looking for answers for my chronic pain. My neurologist hinted at this today, but didn’t want to say it outright. I have a friend who has EDS and pointed me to this video. I have some signs of Marfan’s, meaning my sternum and rib cage formation. I am crying happy tears because I have made peace with the potential diagnosis of EDS, and I don’t feel like I’m crazy anymore. My pain is 95% spinal. My new neurologist thinks that I may have that hyper mobility in my spine because of how out of line my sacrum, pelvis, and hips are. I’ve been in hell for six years and I have made peace with all the bad diagnoses I could have. I just want answers, and you have given me hope and knowledge to present on my next visit. Thank you, so very much. ❤️

I was watching this for fun and I passed everything

Good vid as usual. I pass 99% if the criterion, but since last I posted to you I finally DID have my genetics appt last week, after a 9 month wait , and I DO actually now have the official dx of HEDS... which I basically suspected for last 2 years... but it’s strangely validating... and still ... idk if shocking is right word... but I just cried when the dr told me “yes” after sooooo many years of so many drs not believing my issues of telling me it’s all in your head etc. now I’m waiting for the blood work to come back, as I DO have the very fragile skin, but she said it doesn’t necessarily mean I have Vascular type... fingers crossed... and apparently I have pots, mcad... as well as all my other co morbid... GP, dysautinomia..etc.

So much information organized beautifully!! Thanks!

I am in the process of getting diagnosed with POTS and I noticed I've started to have systemic pain that keeps me up at night. I have a toe and two hips that pretty much dislocate and lock back in with every step I take. Both my mom and grandma also have these problems and are hypermobile. And I happen to have stretchy skin, which I never even realized! Thank you for raising awareness by making these videos. I'm going to ask my doctor to see if I have it.

I got diagnosed with eds about a year ago, im 14 and it’s so painful and horrible.. i had to quit dance because i was in so much pain, i might be getting a wheelchair soon.. hopefully not though

I’m fine I just have hyper mobility

Just listening to you talk about this you are so intelligent and seem super sweet! I love learning about all of these different diseases/conditions. I personally have Crohn’s disease and I think my brother has Marfan’s, but he refuses to go to a DR to get a proper diagnoses.

A medical professional mentioned EDS to me, and told me I should speak to my doctor about it. All of my doctors over the years have never mentioned EDS. I’ve been in and out of the ER, and clinics, and DR.s appointments for years trying to understand my stomach/abdominal pain, GI symptoms, Skin problems, and other problems I’ve had, but one chiropractor I’ve been seeing for eight months has put so many pieces of my medical history together for me. It’s finally the most possible explanation for my entire life of pain, and the embarrassment that comes with chronic pain and joint problems. I’m only 20, and this shook my world a lot, but I feel more prepared now. I pass every feature excluding specific medical features I can’t personally see, but I’ve never had such a close hunch.

Thx for the great vid!

I pass all of these, oops. I've always thought something was wrong with me so now I know I need to be tested. Let's see what else is wrong with me! -Migraine disorder I forgot the name of -Medullary sponge kidney -Unexplained seizure -possible EDS???

So helpful. I believe this may be what an in-law has, in my spouse’s family, and therefore I will be extra vigilant and proactive with our children. I will also bring this to the in-law’s attention. Thank you so much for sharing. My atlas has subluxated and won’t stay so I’m having Prolotherapy to fix my laxity. I’ve read a lot of EDS people have benefited from Prolotherapy. I was asked if I had EDS by my doctor, and I didn’t think so. But I wanted to educate myself, and watching this I see a lot of these symptoms in my in-law and I believe they may have it, maybe my spouse also-thank you so much for sharing this information- really could save and help someone!! ❤️

Wow, just happened across your video and I think some form of EDS is what has been causing my suuuper persistent shoulder pain. I would've never known. Thanks, going to the doctor soon.

Holy shit this explains all of the stretch marks on my body

Thank you for this video... I'm going to talk to my doctor about t, because the criteria indicate I should have this checked out.

I’ve seen videos about this before but I never really realized what it was by name, I went to my doctor this Monday for issues with my knee locking up and my hip hurting so much (not the actual hip but the nerve) and he referred us to an orthopedic (we are still waiting for an appointment) he mentioned to us about EDS just in advance in case the orthopedic doctors said anything about it. After learning more about this Syndrome I really have come to appreciate him even just telling us about it considering so many people with this weren’t diagnosed or even told about it until they were much older. My knee and hip aren’t my only issue which is quite frustrating, I can’t lay down on the ground without my back completely seizing and feeling like it pops out of place and I’d say about 3-4 times in the last three years my right knee decides to dislocate or maybe not fully but it comes out of place, I’ve always had some sort of pain but I’m tall for my age so they’ve always just said that it’s just growing pains (which very well may just be what it is but it’s just interesting) I don’t know, thank you so much for all of your videos on this subject, it has helped me learn a lot more and come to terms even just with the possibility of this. I have really bad anxiety so I like to prepare myself even if it turns out to not be that! I hope the best for all of you guys and I hope you all who are searching for answers can find some soon!! Thank you if you get this far I hope you have a great day!

Your channel is very helpful I was just diagnosed with Hypermobility EDS, due to the fact I had a complete mental prolapse which is very uncommon because I never had children , and I’m not elderly , had surgery for it it came back again, my motility is no longer working and I basically am super abnormally flexible I also have pots and mast cell disease

I passed this with flying colors so that's fun- I'm getting genetic testing done for the other types before they test me for hEDS so they don't misdiagnose me. I'm hoping I actually get a diagnosis so I can finally get validation for the amount of pain I experience (everything hurts all the time its so stupid) also I just realized I had the heel things it freaked me out when I checked

I tried doing the first one and cracked my finger and almost cried so I don’t have it I guess..

If i went to a doc and they asked me all this i would get the diagnosis for sure. I already got hyper-mobility in most of my joints.

THANK YOU FOR THIS VIDEO! I have been told my entire life I'm a hypochondriac and I'm fine. I pass so many criteria it's not even funny! I am taking this to my doctor the very next appt! Thank you so much!

When I pass every. single. thing. and my doctor still tells me it's growing pains.

I’ve been searching for answers for 2 years and a few months ago I was diagnosed with EDS

Massive muscle weakness and pain. I subluxate in all my joints from stupid things like walking, sleeping, reaching, chewing, etc. Ruled out everything else. I need to show my Dr this. Ty!

Thank you so much. I am currently in the process of trying to find out if I do have EDS. My Dr seems to think it’s likely but because my case is so complex, I also have another autoimmune disorder that they can’t decide between SLE or MS or something else. All I know is they think I have both with a topping of chronic respiratory distress (essentially terminal lung failure). Your information was easy to understand and just what was required. Thank you and please do keep up these videos. 👍🏻😊

I know I don’t have EDS why am I watching this

this edition of: there’s something wrong with me what could it be this time?

I wanted to comment. When I was mis diagnosed with fibro about 2 months ago this video came through my feed. Until I saw the thumb nail I did not know touching your thumb to your arm was abnormal or that I was hypermobile (9/9). Now I have an heds diagnosis (pending my genetic testing) and am finally getting answers after a lifetime of being sick....thank you!

You are very intelligent and absolutely adorable! Thanks for helping me understand EDS and I wish you the best in your journey!

C1: 7/9 (passed) C2:6/9 (passed) C3 whoopsie I guess I don’t have EDS

My joints hurt just from watching edit: I didn’t do anything. I’m just lying in bed and my back also hurts

Just found this video off Doctor Mike's Day in the life Covid edition - Thanks! This was really informative and I'll definitely be watching more of your videos!

im glad i watched this. i always figured i was the hyper mobile type. of course i read about the atrophic scars and stuff, but those scar photos you showed looks a LOT like how my skin scars. i’ll definitely make sure my doctor rules out the classic type.

I don't know what this is but I passed everything so....

So sometimes when I wake up or I fall, I will get a weird feeling in some joints and they look a little off, but it doesn't hurt, just feels like there is preassure being put from the inside. Is this like dislocation/partial dislocation?

I thought I was strange my whole life and I even have OAS which made me thought I was strange but this is very reassuing!

Good to see that after 25 years I still qualify 😂 I was always told I had piano fingers and have never heard that could be part of eds thanks for spreading all this awareness I’ve always felt like a freak and was alone until I had my daughter (I’m adopted so I have no idea of medical history, my daughter has it as well). I’ve had way to many joint repairs next will be a hip replacement from it dislocating too many times and I’m only 37

My knee would come out of it's socket when I kneeled down. I'd have to rearrange my leg to get it back in again, lol.

I can’t point my pinky 90• degrees because I broke it and i didn’t get it X-rayed bc it didn’t hurt that much 💁‍♀️ so now it looks kinda weird thank you for coming to my ted talk

This is really well done.

I’m so happy I found this. I have ra endo fibro Degenerative disc disease. And now I’m thinking eds. I have family who may have it but no paper trail. So on Thursday I meet with a Phisyo who specializes in hyper mobility eds!!! Thank you so much for this info

i’m hypermobile but when i was young my doctors never thought i had eds because i can’t touch my tongue to my nose. based on this video it sounds much more complicated!

I have short fingers 😂😂😂 but my thumb goes past my pinky. I can do that on both sides :) I get so tired of my ankles rolling and my calves and wrists hurting tho

Hi Izzy, awesome video - thank you for sharing! I'm seeing a specialist in May to test for EDS. I can actually hyperextend everything that you mentioned in the first 2 minutes of the video. For Criterion 2 I have the soft skin, hyper-extensibility, unexplained stretch marks, I didn't realize that the papules are EDS related. I never knew what they were from! I have dental crowding - which reminds me that I need to make a dentist appt lol (thanks, haha!), when someone texted you I thought it was my phone! For Feature C, I had the muscular skeletal pain & chronic widespread pain for years but I also have Fibromyalgia, and reoccurring dislocations - but they are not complete dislocations if that makes any sense.

I just got diagnosed! Someone finally listened to me.

The splits are normal though lol

Omg I got told I was faking it but I wasn’t and got told I didn’t need a wheelchair and I would walk and my hip would dislocated I got used to it and now I am in a wheelchair and is a lot easier

Thx for making this very informative vid! I appreciate ur doing this 😊

For 8 months of being physically exhausted, missing 32 days of school, being extremely cold, and connecting with these symptoms, march of 2018, I was dignoused with eds hypermobility type 3