Hypermobile EDS Diagnostic Criteria 2017
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- čas přidán 6. 09. 2024
- Here is me explaining the new diagnostic criteria as of 2017 for Hypermobile Ehlers-Danlos Syndrome. In 2017, the Ehlers-Danlos Society released new criteria to better specify and ensure no one without EDS gets a diagnosis.
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WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.
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#ehlersdanlos #eds #diagnosis
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.
I'm so glad you finally got your diagnosis! I know...I felt the same way before I had my diagnosis. Validation is so great, and hopefully you can have a more specific treatment plan now!
ooooohhh say hi to Rafael and Abby💕💕💕💕
@@abbyabbycaleigh7575 Hi to you, too. Thanks!
Can you explain to me what EDS is please?
FoolyLiving, I’m so sorry for you. I’m glad you had somebody to help you. I did too. If it weren’t for my cousins being diagnosed and me having the same symptoms, I’d be in the same boat. My immediate family wouldn’t have done anything for me. I’m so happy you got that special person in your life.
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
Such important things to say. So many people have some hypermpobility but do NOT have EDS, while some with EDS didn't even realize they would ever be considered hypermobile!
@@IzzyKDNA I didn't realize that I could hyper extend my limbs for the longest time and I didn't know that getting dizzy and blacking out when you stand up was unusual. It wasn't until I got sick with a different disorder that my EDS was discovered.
I passed section 1,section 2(feature a and c) not sure on section 3 as my family has a history of rumitoid arthritis and reinards.
I also get dizzy alot
ella rosenberg, That’s true, this is the reason why you go to a Geneticist or Rheumatologist to get the proper diagnosis, like I did. If I were you, I’d do your research to why people are posting their comments on here. I don’t think they are putting them out to find a self diagnosis. Most I think are getting answers and trying to see what they can do and where to go to see if they do have Ehlers Danlos Syndrome. The people who have EDS are very knowledgeable on the Syndrome, because they have know what their limits are with their body. I have a lot limits. I thought I had Lupus. When I went to a Rheumatologist to find out whether I had Lupus or not, I found out different. I got diagnosed with other things that same day. So that’s why people should always do their research. Just like you should.
On this episode of: what might possibly be wrong with me
literally my life before my diagnosis
@@IzzyKDNA I'm so happy to hear that diagnosis is possible. Happy for you.
@@IzzyKDNA TY for your channel. I just got inspired by my hip surgeon who said I was prob hypo stretchy or something like this, when I was young. I came home to look up some stuff, on you tube when your channel popped up in my feed. I've been suffering over my whole life, with most ALL these ailments....and it upsets me that nobody would think to test me for this. You would think @ age 52 someone who cared enough would say *ah, Ha, I think I know what this is*. Thanks to you, I am about to go get tested for this, so at least I can have a proper diagnosis. If I'm wrong, I'll let you know........ Thanks again. I wouldn't wish this junk on anyone. Stay well. Peace & Love to ALL whom suffer.....
Dawn if you had EDS you’d be hyperstretchy instead of hypo.
Mellianaify literally me rn
Anyone else stumble upon this and not know what EDS is😂😂
Keedan Smith yup
Yep
Yep. CZcams recommended for some reason...
me
I just assumed it was EDs as in eating disorders and, as someone with one I was automatically interested, I just clicked to see who was sharing content promoting eating disorders and was gonna report it but false alarm I guess
I clicked on this video thinking it was about eating disorders but this was very interesting and educational
Ava Carter when I read the title I though that for a minute the I realised its not because eating disorders are ED and this condition is EDS.
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!
OMG NO WAY!!!! I'm applying to genetic counseling programs in December!!! Where do you go?
@@IzzyKDNA Ahhh that's so cool! You're going to make such a great GC, omg. Just finished my first year at Indiana State. Best of luck with your applications!!
@@hannahjochem8884 That's so awesome!!! I was actually looking up Indiana State's program yesterday! Thank you!
My son used to tell his friends, “I have the softest mom. Touch her!”
Love this video. One thing I learned from my geneticist is there cannot be (much) resistance on the Beighton Scale for example I can touch my thumb to my forearm but because it requires some force those didn’t count.
I know I’m hyper-mobile but not sure I have Eds. I passed this but still not sure
Regan Simmins same, I have hyper-mobile joint syndrome which just means I have less ligament in my joints
you should see a doc about it then b/c if you passed the criteria, then that means you deal with chronic pain so hypermobility + chronic pain + all of these other connective tissue markers likely means you should see a doc
Same but I live in south america where doctors cant know if i have eds or not.. I was just told i have hiperlax ligaments.🤷 But I aced this criteria.
@@Abb3yCh3rry in Ecuador and chile are many doctors who knows about this, don't know about the other countries in sudamerica
Passing = diagnosis so I would see a doctor!
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
ugh I'm sorry to hear this. I hope you are able to see a new doctor who is willing to test you for it.
have you tried a different doctor ?
@@gracelynpugh9933 I am currently looking for a new doctor who would be willing to test me
Have you got a 2nd opinion?. Also if you don’t, go to either a Geneticist, or a Rheumatologist to do a DNA on you. The type of Ehlers Danlos Syndrome I have doesn't show up with a genetic test. They have to go by the symtoms. I have all the symtoms. You can try to self diagnosis yourself. Then bring it up the issues you are concerned about, with those 2 type of doctors, when you see them. That's your best bet instead, of going back and forth with your doctor. All people have to get a referral from they’re primary care physician in order to go to a specialist.
@@tinaj.rhine-schmidt152 just thought ur comment would be a good place to do an update. I go to Kaiser Permanent so my primary physician has to refer me to specialists. I have been having pain/joint issues since I was a little kid. Every time I mentioned it, I was told that it was growing pain. I am now 20 years old and definitely not growing. When I recently saw my doctor and I mentioned testing, or sending me to a specialist (because all my rheumatoid arthritis tests have come back negative) she said no and that my problems where probably just odd pains and that ibuprofen would be enough. Over the last month, my pain has been increasingly worse and my knees have been buckling/I ended up dislocating and putting my thumb back in place by accident. I called Kaiser once again to try and get a different doctor/see if they'd be willing to let me talk to a speciliast. I got assigned a doctor to have a phone appointment. When I mentioned the comment the urgent care nurse had made about getting tested for EDS and told the doctor that I'd individually been looking into it and had the traits but wanted to get tested, she told me "YOU'RE NOT A PHYSICIAN SO YOU CAN'T DECIDE THAT." She then told me she would not be willing to send me to a specialist without my primary physician signing it off (it was frustrating because I didn't say I had EDS, just that I would like to get tested). She then told me in all my tests my C-reactive protein has been higher than normal which could link to rheumatoid arthritis (but i've been told I'm negative for it so...?). Finally she told me to try to get my primary physician to send me to a specialist. Overall, I am really sad and disheartened because at this point I just don't know what to do and I keep getting told different things. My pain continues, but it feels as if they are not willing to listen. (Sorry for the long rant a lot of this happened today and made me upset). Hopefully i'll have a better update in the future
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 just have weirdly flexible hands i think
Same, and hips and shoulders and wrists
same! people for some reason are scared that i can pretty much do a 360 rotation with my wrists and not break them.
Same except I have this
I can dislocate every main joint on command
Ischa Bemmel i could dislocate my right knee on command, i mean once i just sat down on the toilet and dislocated it along with i just jumper in science the other day and dislocated 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.
Agreed with EVERYTHING said here!
Are there any sites for info on EDS?
Madeline Hunter, your right about what she is saying. She should be saying the differences on here, so people understand and aren't mis-imformed. The reason why is because my cousin has 2 different types of EDS and she has the hEDS and the Cardiovascular type. Which I'm grateful I don't have that type. Anyone who is lisenting to this video, this is only abouut Ehlers Danlos Syndrome Hyper-Mobility type. Keep that in mind while listening.
@@pomcrzymimi1798 yes there is, there's one called EDS Inspire. Then there's also one on Instagram. All you have to do it put it in the search engine.
.
😅 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”
S. Louise being able to do some of these things IS normal. And having a few of these symptoms are as well. It’s when you pass the whole criteria that EDS needs to be suspected. You probably just have a few hypermobile joints
Like that aren’t related to EDS because most hypermobility isn’t caused by EDS
Izzy Kornblau yeah I know so I’m not claiming that I must have EDS (I really don’t need another acronym diagnosis to add to my list of actually diagnosed acronyms) I’m just commenting that huh I didn’t realise those things I could to so easily/naturally, that I didn’t realise not everyone could do them
Louise same!!
Yea that was me when I was growing up but now I got diagnosed and in pain and I'm 18
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!
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!
You're like a friendly doctor. Very informative and thorough. Thank you and all the best on your journey.
hahahah "friendly doctor!" And thanks!!!
@@IzzyKDNA Lol : ). My pleasure Izzy!
Im researching EDS for an assignment, and every single person with it on the tube is gorgeous lol
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’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
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 CZcams 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
NO ONE should have to wait so long at all. I have suspicions that it's probably not that rare. Currently estimates are 1 in 5,000 to 20,000 people, but I believe it's probably more like 1 in 1,000 people. I'm so glad you finally figured out what is wrong.
Yeah I'm not a doctor but I would certainly bet a lot of money that you have EDS based on those things ever before you got diagnosed lol. I also suspected POTS starting as a young teen but a cardiologist laughed when I asked about it and didn't test me... so I didn't get a POTS diagnosis until 26, 12 years later, when I was diagnosed with EDS. To think that if I had been listened to, I could have been diagnosed at 14. I'm glad this was helpful to you though, it's such a relief to find some useful leads for our issues!
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.
SO glad to hear your daughter finally got diagnosed with the conditions she has. I'm sure it's very validating, and hopefully she can now have more specific treatment options because of the diagnosis!! :)
Can you tell me more about what you mean by "due to the blood condition that goes with it"? I'm not aware of a blood condition that links EDS and lupus so I am curious. Unless you mean they did blood tests to check for autoimmune stuff in the process of diagnosing EDS and incidentally found out she has lupus too.
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"
If you pass the criteria, it counts! I mean, it must be done by a doctor to be official. But it can still be EDS even if you don't experience super severe issues. The severity of it varies a lot. Mine is relatively mild but I definitely have it. Only after the diagnosis, which surprised me a lot, did I realize how much it actually applies to me and how many things I always thought were normal are not. I also realized that I was tolerating more chronic pain than I thought because I was so used to dealing with it that I had learned to ignore certain pains when possible.
@@labiandmabimabi5550 There's no cure, so EDS is treated symptomatically. If you get dysautonomia or POTS from your EDS, they could give you beta blockers, Clonidine, Guanfacine, Mestinon, or Ivabradine to treat it. If you get gastroparesis or IBS-C from your EDS, they could give you Mestinon to treat that. A pain specialist is necessary to adequately treat chronic EDS pain. Treatment depends on which health issues your EDS causes you.
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.
Izzy, PLS never take this video down! I STILL refer to it and pass it along to others! Ty again for helping me!
I'm so happy it's helpful! I'll definitely keep it up forever
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.
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.
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.
YAY im so glad to her you finally got your diagnosis!!!!! It's a weird feeling when you get it. Like should you be happy? I was really sad and happy at the exact same time when I got my diagnosis. Hopefully the fragile skin is just classical type (or hypermobile type though not that common). Honestly though from what I know, the fragile skin is more common with the classical type than even the vascular type!!
Izzy Kornblau hoping your right about the skin-classical type. There’s a new good vid by “life with stripes”- she thought she had hyper mobile but was never blood tested, so finally got the blood drawn after a year of torment thinking she had vascular type due to her skin, turns out she has classical.
And yes, still in that happy? Sad? Phase, which you addressed beautifully in your next vid 👍 btw I was just up in nyc again a week ago for 2 nights/ omg there is this amazing gluten/dairy free/vegan bakery on orchard street that is just... amazing! I can actually eat there stuff/ but they don’t ship 😂
yeah i know i saw her video about that!! hopefully its the same for you! omg whats the place called???!! im away at school in st louis but when i go home to nyc id love to check it out!
Izzy Kornblau it’s called Rawsome Treats 158 orchard on lower east side- it’s to die for oh my god!! Sooooo goood and edible (small amounts) for us allergy and GP folks! You should DM me on IG I think I’m kat.mom3 - maybe I can coincide my next trip for when your home and we can have a sbux! I met an ig friend this past trip for first time in real life and we had a great afternoon shopping at Zara and coffee! Glad you saw her vid too!
Good I'm happy for you. Not all types of EDS show up in a genetic test. They have to go by the symptoms. The doctors went by my symptoms and that the medications they were prescribing weren't working. Until they started prescribing the medication they do for EDS. Then I started to get better. Having EDS you won't really get better. You will get worse over time, but the medication is to keep you as comfortable as possible, in order to have any quality of life. Because some people who have EDS it is severe and they are in a lot of pain. They have had a lot of surgeries because of broken bones. Like me. A lot of people with EDS also have other criping issues as well. Like Fibromyalgia, Osteoarthritis or Degenerative Disc Disease. There is other things to, that fall under that criteria. Well any way I'm glad your on your way to the proper care you need.
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 😬
Yeah I thought everyone could do it until I guy told me he couldn't and I tried to force his to do it and he was screaming bloody mary so I quit trying. I thought I was inflexible though.
Do they mention contorting into weird positions in sleep
Salene Brom no that just means you’re possessed
Like what type of positions? Like a pretzel?
@@Trash.baby.2004 😂
On the ceiling?
Mr. Marshal ......🤷🏻♀️now I really just wanna know
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.
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 know this is an old comment, but if I could make a suggestion... a wheelchair isn't a bad thing, in my opinion. It's a tool to make your life better or easier. Think of it as an accessory to help you, like the way a backpack helps you carry things more easily, or a belt to help keep your pants up. You might even be able to modify your wheelchair to make it reflect your personality! Think holographic vinyl if you like that sort of thing.
I hope your pain is more controlled now. You have a lot of wonderful things to look forward to!
Laynie Fingers I agree. They could even just use the wheelchair when they go out. Just because you have a wheelchair it doesn’t mean you are confined to it.
Laynie Fingers i just noticed u replied.. i love you thank you.! im doing better!
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 💕💕
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.
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.
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
Ok I’ve tried to explain to people that I don’t trip it’s like my ankles say f- you and then I’m on the ground lol
Hay there, I've had symptoms for 13 years although the joints have been loose all my life. Diagnosed 8 years ago with EDS Hypermobility and Chronic Pain Syndrome and a list of other conditions.
Maybe I’m the only one who sees it but you look a little bit like Claire Wineland
i think its the big smile!
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.
When I pass every. single. thing. and my doctor still tells me it's growing pains.
I actually gasped, you have to be kidding my doctor always says it’s growing pains too.
My dad says it’s growing pains but when I went to a rheumatologist she said I most likely have EDS :)
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
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
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
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.
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. ❤️
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.
Yes definitely go see your docs about EDS if you think you might have it. Hope they can give you some good answers for you and your children. :)
I always thought I didn't have EDS because of my lack of finger mobility, but I have mild hyperextension in my elbows and legs and the part with the jaw issues/palate expander got me because I HAD A PALATE EXPANDER AS A KID. And I constantly throw out limbs without doing any sort of exercise/trauma. I've thrown out my back while getting out of the shower, I've thrown out my neck while making my bed, I've twisted my shoulder by walking my dog, etc. And I, like you, have extreme bloating and pain when eating (currently getting the gastric emptying study to see if it's gastroparesis). Anyway, I don't know why my rheumatologist didn't pursue EDS more with me. THANK YOU FOR YOUR CHANNEL.
not to say it's not eds bc of course it totally can be and im no doctor, but from someone with EDS, I know a lot of people are hypermobile and dont have eds so if your worried, dont be to worried because it is more likely to not be eds than to be eds just based off the things you have explained. not at all trying to invalidate what your saying! hope it does not come off like that. just giving you some advice from someone with eds. do you deal with chronic joint pain? if so then that means there might be something wrong but if not it might just be hypermobility and then you also have some really bad stomach issue.
Thanks so much for your thoughtful comment. I get chronic joint pain. Sometimes it disrupts my sleep. It’s so deep seeded too. I have this insatiable urge to stretch. Like no amount of stretching will ever relieve it. I call myself a tight bendy person. There was a period of time, I stretched for 3 hours a day because the tightness/pain otherwise was so unbearable.
@@MicaelaHoo yeah i totally understand what you mean about the urge to stretch! i hope you can find a doc to check you out to see if you do in fact have it and run the necessary tests for your heart etc
@@courtneysteinberg8140 Thanks so much! I don't have extreme hypermobility in my fingers so I've always written EDS off, but I have enough of the other symptoms here that I wrote about before as well as unexplained stretch marks, uneven shoulders, hands and feet that turn purple and numb, and the bumps on the heels, that I'm going to definitely bring it up with my doctor.
why am i watching this i’m literally fine
lol education i guess?
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!
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
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’m fine I just have hyper mobility
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
Lol I got 9/9 😂😂 (I don’t have EDS tho, I have Stickler Syndrome)
Aurora Bentivoglio if you pass critters 1, that just means you have hypermobility, which is super common in the general public. But stickler syndrome patients might pass the EDS criteria all the way until the end when it says you need an absence of a different genetic connective tissue disease. So that’s why someone with stickler syndrome might pass most but on all of he EDS criteria
Oh what's that?
Howtomakestuff it’s this thing that I was born with and it’s main effect has to do with the eyes but it has side effects such as dodgy bones 🤣
@@aurorabentivoglio9723 Oh lol 😂😂😂 So its like a cool side effect?
Howtomakestuff not really cool lol, subluxations (partial dislocations, common in hypermobile people) can be really painful and debilitating because walking can cause the joints in the legs to slip and lead to a fall.
*Oh my gosh!!*
This popped up out of nowhere and I've been trying to figure out what's wrong with me for years!!
I tried doing the first one and cracked my finger and almost cried so I don’t have it I guess..
its very rare lol, trust me u don't want it....its just pain...a lot of it
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!
I'm so happy this was informative!! And Dr. Mike is amazing
@@IzzyKDNA I saw your comment and I thought "Hmm, maybe I should check this out!" Because it's always great to learn something new!
Why have I never thought to search my own disorder on CZcams. Been feeling so alone over here.
Facebook support groups are also excellent! I am not even a Facebook user really, but I use it just for EDS groups and support groups for other conditions I have.
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
I was watching this for fun and I passed everything
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.
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?
It absolutely can be! Not all dislocations and subluxations are painful. Dislocations usually are very painful, but not always. Subluxations are very frequently not painful. My subluxations are usually painless or mildly painful.
Yeah that's how my sublaxations(partial dislocations) are. it doesn't usually hurt unless I'm swimming when it happens.
So, I doubt I have EDS, but I've struggled with a lot of joint pain. I passed the first Criterion, the second one I only got 3 for A, C and being an Orphan, I had no idea about B. I passed Criterion 3 as well. I'm able to pop my shoulder and hips out of place, I've had knee and hip pain problems for almost 6 years now. I've gone to physio before, but it hasn't been much help. I sometimes have random pains in my body for no apparent reason, so badly that I've been brought to tears by it. I literally was stood up at work for maybe an hour and my knees were so incredibly painful I sat in the back room crying, and every time I went into work I had to take painkillers (which didn't help very much), and sometimes the pain is a random ache. Like, if I sat for a few minutes in a certain position and moved, I would be in a lot of pain just because of it. However, when I bring it up to my doctor, she really flippantly says "You're hypermobile so you just need to exercise more." which sucks because it feels like she doesn't care at all. I do dance, I do drama, I do a lot of physical activity already. I'm unsure as to what to do now. I've fractured my pelvis whilst catching someone after a cheerleading lift went wrong, even though he hit my head when landing. I'm really not sure what to do and it's really bothering me with the lack of knowledge that I have on the matter.
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???
Good luck and hopefully you can find a doc to properly evaluate you. It's also possible for EDS to caused migraines for specific reasons, and might explain some of the other issues you have...if you actually end up having EDS. :)
Connective tissue disorders affect your entire body including internal organs, I get migraine too and also IBS. I finally just took an entire list of symptoms to the dr, written down because I get anxious (another symptom haha!) and he went, well this is pretty obvious to me. So make sure you take a nice list of symptoms, they will appreciate it.
Kaleigh Fish dp
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.
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.
Glad this video could potentially lead you on the right diagnostic path
@@IzzyKDNA I'm actually debating whether it's worth following up. I'll talk to my gp when I see him next.
@@IzzyKDNA It took me a long time to get the courage to ask my doctor about this. When I first mentioned it he asked if I realized how rare it is, and told me that in over 20 years of practice he's only had 1 patient with EDS. After telling him why I wanted to be evaluated he decided to examine me, and afterwards he had no problem referring me to a rheumatologist where I went through the same process. Now I'm going for genetic testing to rule it out.
I wanted to thank you for this video, because this definitely gave me the push I needed to ask my doctor about it. Regardless of whether I have EDS, my rheumatologist will be prescribing physical therapy to help strengthen my muscles to help my joints. So hey, your video helped make my life better!
Hi, Izzy! My name is Natalia, I am Brazilian and I probably have Ehlers Danlos.All the tests I did 100% . Unfortunately I don't know a doctor who knows this Syndrome (2017).I believe I lose everything I have This year. Due to the change in online work I am available 24 hours a day.I cried when I saw you painting the pain.
Holy shit this explains all of the stretch marks on my body
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!
I’ve been searching for answers for 2 years and a few months ago I was diagnosed with EDS
I always had problems with my joints , the knees ,my fingers ,my hips and even my jaw . Never had an explanation ,i think this might be it , this explains everything...my fingers ,my pain and even my dental situation . I will call my doctor
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
saw a guy on an internet forum who thought his hand was broken but didn't want to see a doctor and a bunch of people tried to get him to check it out because it could be bad if it heals wrong after breaking
Are you sure it was broken then? Could have even been a subluxation or dislocation! Just saying, without a scan it's very hard to know, but those things happen with EDS...
I used to have 9/9 with the Beighton Score ... My joints are now constantly in severe pain and so I can no longer do any other than hyperextend my elbows.
I know I don’t have EDS why am I watching this
lol at least you learned something!
Banana_peels123 _ , you didn’t need to watch it. You could’ve just bypassed it. People who have Ehlers Danlos Syndrome, like me are interested in watching vlogs like these. Because it gives us insight on other people’s types they have. Also to see what limits they have or not have in they’re lives. Some people have no limitations and other people have a lot. So instead of being the way you were with your response, you could’ve said nothing.
Tina Schmidt I wasn’t being rude?
Banana_peels123 _ I didn’t say you were. But you didn’t need to say what you did about the vlog. If you don’t want to watch it, by-pass it
I just shared this with my sister. I have hyper mobile EDS, as did is my elder sister and little brother. My younger sister is I denial that she has EDS and refuses any PT or meds... Thank you.
Maybe it would be helpful for your sister to know that even if she feels fine now, PT for EDS has a primary goal of preventing future pain, which usually becomes severe in older age for people with EDS, if not sooner. A lot of people doing PT for their EDS don't notice a ton of benefit in the short term but it's proven to prevent severe pain and disability later on (and for many, that severe pain and disability comes when they're still young). Hope that helps. It is a good preventative measure. But ultimately she has to want to have the diagnosis to ever accept it I think, so you can only do so much.
So umm I thought I was just hypermobile, but I'm pretty sure I passed this test. Lol with flying colors. But the thing is, I've never had any issues? Sooo is this something I should get properly tested for? Or can I just ignore this and not do anything about it? Lol so confused! lol wasjust scrolling through CZcams and I come across a video that's on my recommended telling me I might have a medical condition I've never heard about
hmmm so i've never heard of someone passing the entire criteria who doesn't have EDS. sometimes people think they pass but they are just under the cutoff for a bunch of things they didn't realize...that's the only explantation I can think of. BUT I do know that people can TOTALLY pass the first part (the Beighton Score) and not have EDS, but they shouldn't have anything else. If you don't have pain then you don't pass the third criterion so you can't pass the whole thing...Im assuming that part is for the people like you who maybe don't have a connective tissue disorder like EDS but can for some reason pass. I dont know. if you mention it to ur doc tho, let me know what happens!
Same here! I've never heard of this. Off to look but wow...I have MOST of the criterion covered. Confused but about to educate.
Maybe it's just asymptomatic hypermobile type because that just means you don't have pain but you are hypermobile. I'm probably wrong though 😝
I am hEDS too. EDS is a spectrum disorder, sort of like Autism or Cerebral Palsy. Some people are barely affected, and other's are completely disabled. So if you have real concerns, bring them to a doctor. However, they likely won't take you seriously, unless you have adverse effects of some kind. It is incurable and poorly understood, so it is essentially about treating symptoms.
It took me a decade with very severe symptoms to even get a doctor to consider it. It was pre-2017 "makeover" though. It has been a whirlwind since, with open heart surgery to repair an ascending aortic aneurysm caused by faulty connective tissue in the artery wall. I am the only hEDS patient with this presentation I or my team of doctors has come across. I don't fully dislocate. My skin is fragile and bruises easily. My POTS is disabling.
Every single EDS patient is different, and you may get crossover symptoms from the different types. Unfortunately mine are vascular in nature :(
@@giabarrone7422 I'm sorry to hear you've had to have such significant surgery and have such a unique presentation! I'm sure that must be scary. :(
I gather that you had genetic testing to rule out vascular type? (I know all "zebras" are unique, so I don't mean to imply doubt, just want to verify that your doctors are aware/knowledgeable so you can get best care possible)!
I've watched some lectures posted online from Dr. Kenneth Liu, he is a neurosurgeon who was with UVA (Virginia) and currently at Penn state in Hershey, PA, and he's really interesting (well, to me, anyways, haha). He's a leader in researching/treatment/diagnosis of neurological flow issues, and he's taken particular interest in the EDS population, and isn't sure exactly why but he's noted that individuals with EDS seem more prone to having neurological problems with flow (even beyond problems caused by a structural problem like CCI/Chari malformation/etc which, especially something like cervical instability, follows a pretty logical correlation with hEDS). I don't recall if he currently has data on it or if it's just his personal observation, so don't "take my word for it", but there may be some reason to speculate that "typical" (aka not EDS) people may be able to function fine with some amount of less than ideal blood flow to/drainage away from the brain, while an individual with a similar condition who also has EDS could be significantly impaired by, and their body unable to cope (well) with the problems of limited/constricted routes of flow/drainage to/from the brain (so maybe our tissues are generally more susceptible/unable to tolerate as many less than ideal conditions that wouldn't nessecarily become problems in the general population).
I realize to a point that sounds a bit like, "duh...that's the whole thing about EDS, is that our connective tissue, uh... Gots issue?" haha.... I just thought of that little phrase and I'm likely way more amused than I should be, but I'm ok with that haha... At least I enjoy my goofy self ;)
Anyways, I'm trying to not ramble too much (I shouldn't even admit this, but I've deleted a good chunk of my original ramble... Summarizing isn't my strongest point haha), but I mainly just wanted to, I guess, "validate" your experience, if that's even the right word.... At least just acknowledge that EDS, all types, are still not really well understood overall, and the human body is so ridiculously complex, there's plenty we still don't even understand about how it works in a healthy individual, and yeah... Every person is different and there's so many different ways we may or may not be impacted by eds (or anything else, for that matter)! I'm sure you know all this, maybe I'm writing this as much for myself and anyone else who might potentially come across this as I am for you.... I know most of us have been brushed aside and not taken seriously FAR too many times, so I guess it seems well worth following through on any impluse to remind others that their experience may not be the "norm" even among the rare, but that's just how it goes sometimes... You sound like you're super strong and hopefully you're in good hands with your doctors, I certainly wish you better health, at least no further unpleasant "surprises", and hope you're able to find some joy and comfort everyday, no matter how much your health may be limiting in what you're able to do.
The other reason I mentioned neurological "flow issues" (I'm not sure what the best medical terminology is), is just in case you or someone else happens across this and it might be a factor in your health. I've been actively seeking answers for my own neurological problems for years (and 8 years ago when everything started going really downhill, I told my [previous] neurologist that I felt like I wasn't getting enough blood or oxygen or SOMETHING to my brain, and he laughed in my face and said that would be a stroke. Which is true if I got NO blood to part of my brain, and I'm very very thankful I haven't had that happen, but it is also really annoying because I felt completely stupid for trying to explain my symptoms to my doctor, and I've since learned that one CAN have problems with blood flow to/from the brain that are fortunately not a stroke, but I've likely had several TIAs, "mini strokes", and I am hoping that maybe this doctor can at least figure out what's going on so that I hopefully don't have further or worse damage occur. I've also told doctors that it feels like my brain is being squeezed, and I still have no sure answers, but at least my current neurologist believes and agrees with my concerns and agrees there seems to very likely be a flow issue(s), so I'm hopeful that I'll get in to see Dr. Liu and really hope he can help me.
I admit I feel a bit nuts to be excited about the possibly of seeing a brain surgeon, and as nervous as I feel about the possibility that he would agree and do further testing and surgery to correct the problem(s), I'm honestly so much more afraid that he finds nothing wrong.... It's not that I want surgery, of any kind, it's just that I'm desperate, and have been for a long time. At least knowing about potential answers gives me hope, so I hope that, uh... Sharing that info might give others hope, too... And encourage them to trust themselves in knowing their body, and keep searching for answers if something feels wrong.
I wish you the best going forward, and hope you are doing as well as possible! *gentle zebra hugs*
I've recently had a lot of symptoms connecting to HEDS so I thought I'd try this out to see if anything actually matched the criteria.
I'm not using this in place of an actual diagnosis!!
First Criteria: 7 Points (Not containing the 4 points from the questions.)
Second Criteria:
A; Passed (5/12)
B; Failed (I don't have any family members directly related to me.)
C; Passed (3/3) (No dislocations, however I have bad joint instability so I added a point for that?)
Third Criteria: Failed (Said no to 1 & 3. I was diagnosed with Hypermobility Syndrome, and Patellofemoral pain syndrome in both of my knees today. A lot of my symptoms fit those disorders, and HEDS so I've been looking to see if it could possibly be HEDS.)
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.
ugh that's rough and annoying...I feel ya
@@IzzyKDNA Thanks hun :-)
Love this! A few notes, arachnodactyly and also the tall/lanky/long limbs thing are both part of marfanoid habitus. The latter is measured by if you have an unusually high arm span to height ratio. If you have both of these that's marfanoid habitus which can happen in EDS but is more prominent and common in Marfan syndrome. Also the sign that involves wrapping your fingers around your wrist must use the thumb and pinky from the sources I have seen. I don't think hypotonia refers to muscle strength though, just low tone, but could be wrong--I have always just seen hypotonia and muscle weakness discussed separately. I hope this helps someone!
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
I'm sorry to hear people doubted you...that's so insanely frustrating. im glad you are in a better place now bc of the wheelchair!
No matter what anyone says, you deserve a wheelchair if it helps you! 80% of wheelchair users are able to walk to some extent, it doesn't mean they should. It can be dangerous or simply painful to get around for many many reasons besides paralysis--why not use a tool that helps fix the problem? Your wheelchair use is valid, and screw anyone who doesn't know better.
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!
Riley Freemyer I was diagnosed when I was about 2 so I don’t know how exactly how it worked but I do believe I had dozens of tests done and I would suggest talking to your doctor about it
C1: 7/9 (passed)
C2:6/9 (passed)
C3 whoopsie I guess I don’t have EDS
Thankful that you don't have chronic, widespread pain!
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.
good luck to you!!
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
I think I need to go see my doctor soon... I meet all 9 in Crit 1 & answered yes to all questions, 8 in Crit 2, and have been told my stomach issues are Crohn’s disease but am still going through testing to get definitive answers
I have fibromyalgia...recently diagnosed, do Fibro and EDS go hand in hand ( I have other Connective Tissue Disorders too)? X
No, not necessarily.
EDS and other connective tissue disorders are often misdiagnosed as fibromyalgia. In the fibromyalgia diagnostic criteria, there's even a disqualifier section that if you have another condition which can cause chronic and widespread pain (such as EDS or connective tissue disorder), then it's a differential diagnosis that rules out fibromyalgia.
I passed all of these. I am suffering a 2nd major orthopedic injury in less then 2 years, I am now starting the process for official diagnosis. I have had issues since I was a teen
I have so many of these and meet all the criteria but my rheumatologist is REFUSING to send me to a EDS specialist
ugh im sorry to hear this. Is there any way you can find one online and make an appt, or do u need a referral for insurance purposes?
I just went back to my normal Dr with my diagnoses, so you don't necessarily need a specialist just someone that will help you with the symptoms and management, if that's any help :)
I've had the same situation. I was informally diagnosed by an ER doctor that also has EDS and I passed full beighton scale but the rheumatologist that saw me just scoffed and accused me of "faking" pain and said that there was no way "I" had EDS because it's too rare. Every other doctor after him has said I have EDS. That doctor refusing to look at me or consider it has made me terrified to go to new doctors/ERs because I'm afraid they will say I'm making diagnoses up for attention.
You have got this!
Nom Did you have the proper genetic testing done? Even if you have hEDS you need genetic testing to make sure you don’t have any of the other types.
@@felicityaeh I wasnt offered and am in UK so not gd support
I was diagnosed with hypermobile EDS under the old system at John Hopkins Hospital a few years ago. I would say I subjectively still meet the criteria here. Under the old test, I had not hit all of the check points, but was close enough the internist made the official diagnosis. Overall, I think that it is still a subjective test with the doctor, especially with the softness of the skin and elasticity. Personally I was relieved for the diagnosis and to have a reason as to why my joints have always easily dislocated. I have to sleep in a brace because my shoulder will dislocate in my sleep without it. My ankle, jaw, hip, elbows, fingers, and knees have also suffered dislocations.
I don't know what this is but I passed everything so....
I have Heds. since i was 4 i have been dealing with knee cap dislocations. over time my eds got worse i had many knee cap dislocations sevral torn liguments and much more before i got knee surgery. i was diagnosed with eds when i was 8 but i didnt have knee surgery till i was twelve i ended up having it because my knee caps were dislocating almost everyday and i had torn my mpfl sevral times. i had an mpfl reconstruction, and now i am recovering from my second. im an so lucky i was able to be diagnosed early and i was able to be sort of normal though there are still the other troubles of eds to deal with i hope everyone with eds can manage to find a happy place.
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!
艾丽马 yeah it’s much more complicated than that! Plus the criteria drastically changed in 2017 to this. It was a lot simpler before but it was too easy to accidentally be diagnosed so now it’s more strict
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!! ❤️
this edition of: there’s something wrong with me what could it be this time?
I have all these and EDS has been Horrible to me in my older years. I wish I had spent more time enjoying my younger years and tell my kids often to do more with their lives now and I wish the best for them. I worked very hard to get where I am now and fight everyday to keep painting which is the only thing that keeps me sane. I wouldn’t wish this on anyone. I hope others with EDS can at least enjoy some of their lives. Thanks for sharing your info. I plan to talk about EDS on my CZcams channel soon. That is if I have a good day
I went to the doctors for a diagnosis for this but they said that I’m most likely have hypermobile syndrome but my mum and my my past relative have it and I think I have it but the doctor said I don’t.
I’m now going to have physical therapy to help my knees because they dislocate.
I used to have physical therapy but it didn’t help
If you have any advise
Thanks pugtastic
You need to get a second opinion. Did they run you through hEDS screening?
www.ehlers-danlos.com/heds-diagnostic-checklist/
Advocate for yourself, and make sure you get screened if you do meet the criteria.
@@Dulcimerist he went through the checklist but not evidently. He went through the British version for hyper mobility syndrome but not HEDS. Thanks for your advice 🙂
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!
naseerahvj I think I might have been misdiagnosed too. I was also diagnosed with fibromyalgia but think I might have EDS instead. How did you go about being diagnosed?
I’m all double jointed and really flexible... I mean I’m 200 lbs 6’2 guy and I can put my ankles behind my head... I’m covered in stretch marks in weird places like the inside of my elbow and wrists and my neck and back my arms bend backwards freakishly far, well one of them does cause I’ve broke the other one and I can’t even straighten it fully anymore my knees go really far backwards I don’t really have stretchy skin though and my whole family is double jointed and flexible
Also I have bad knee back and elbow pain sometimes
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!
My joints hurt just from watching
edit: I didn’t do anything. I’m just lying in bed and my back also hurts
That was very helpful! huh I wouldn't pass enough. I have hypermobile joints that I constantly hyper-extend without noticing, which I also had confirmed by doctors. X-rays and blood tests haven't shown anything yet. Since I have scoliosis, I already have chronic back pain, and I get reoccurring hip, wrist and finger pain. However joints never get subluxed or dislocated so I guess that would be a big part of the criteria...
yeah there are hypermobility disorders that aren't EDS and tend to be pretty common in the general public. hypermobility in general can still be debilitating and painful for some. i hope you can get some good healthcare management