Hypermobile EDS Diagnostic Criteria On 5 People w/ Ehlers-Danlos
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- Опубликовано: 28 авг 2024
- In this video, five people with hypermobile Ehlers-Danlos Syndrome run through the hEDS diagnostic criteria from 2017! Hypermobile EDS is a painful genetic connective tissue disorder that makes connective tissues abnormally weak, fragile, and stretchy, leading to chronic joint and muscle pain, joint instability and dislocations, dysautonomia, fatigue, and GI tract dysmotility, among so many other symptoms. While the diagnostic criteria help to diagnose, it barely scratches the surface of the impact of this disease.
The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
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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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⚠️just a reminder that MOST people with hypermobility don't have EDS...otherwise, over 20% of all people would have EDS lol ⚠️
I am curious if you also have an absence of a lingual frenulum like me? This is a newer discovery of EDS I believe.
True which would be like 1 in a 120k. However, new research indicates that hEDS is thought to be 1 in 500, *not* the 1 in 5k to 10k as originally thought. Bottom line it is more prevalent and not as rare. Therefore, many of us have been misdiagnosed and/or not diagnosed for literally decades and more medical professionals should know about it.
Very well done presentation. I only came across EDS information recently while reading about a friend’s great-niece’s health issues. With the exception of weight discrepancies and diabetes we have the same health problems. I am on insulin and I think it causes me to have higher weight. I’ve got Gastroparesis, all the fun joint tricks, one leg where the ball slips out of the socket. Of the 4 children my parents had, I am the one who inherited the double joints from our mother.
'Stree-A' is how I have heard 'striae' pronounced. Easier to hear, as well.
please look bellow for me x
The family criteria is frustrating when you have multiple family members that have symptoms. But none have a diagnosis because none of our doctors had heard of eds until we mentioned it
That is very frustrating. I'm sorry to it has been so hard to find a doctor knowledgeable about EDS
My mom is one of 9 and about half of her siblings met the criteria, including her. Not sure about my cousins, but I've of them probably does somewhere. One aunt in particular for sure has it, but has been in denial about it since I mentioned my dx years ago. After her last hip replacement and knee replacement she started to consider it. I actually think my cousin passed away with vascular eds, but I don't have it in me to mention it to my aunt. He passed away at 30. No cause was ever found despite a thorough autopsy and he was a surgeon in peak physical condition. He had other symotoms throughout his life too. Thankfully, the testing for that is more accurate than the testing for HEDS, so my geneticist was able to confirm that I do not have that one. Still... everyone in my family holds their breath until they are 31.
My grandma who was 98 least year when she passed could still touch her toes.
@@IzzyKDNA Even knowledgeable docs (my neurologist is involved in some research) will avoid evaluating (instead just dx JHS) because it's faster and easier. 😞 And my gp (who dx herself w/ type 2) doesnt seem to be knowledgeable about hEDS.
My sister is the only one who really presents as bendy with issues and my entire moms side of the family all have joint issues, healing issues, reperferating wounds.. But my doctor said he took it into consideration although it wouldn't stand alone. I had my geneti s referral by phone mid covid lockdown, but in person he said my skin, my palate and a long list made it. I was prepared to not get it based on family, though!
This popped up randomly on my home page, and within the first few tests, I realized I could do all of these, and have been my entire life. I've been struggling with dislocations since I was 8, have had more tests than I can count, multiple surgeries, injections with 6 inch needles, the works. And nothing ever helped. I'm fully disabled to the point of often needing a wheelchair because of chronic pain, or dislocations. What I call my "loose knee days" where every bend could move into a dislocation or subluxation easily. And in 10 minutes of this video, I had an answer that doctors haven't been able to give for years. I'm bringing this to my PCP soon, and we'll see how it goes. But this, honestly, has given me hope that there *is* an actual answer for all of my pain and illness.
Get yourself to a good EDS familiar Genticist, also look up POTs (Dysautonomia), Mast Cell Activation and Hughes Syndrome. Good luck.
Good you found this!
Same here.. just had knee surgery
Same
UPDATE: Tentatively Diagnosed!!!! My doctor heard how serious my worries were and brought me in for an appointment as early as he could. He went through everything with me, and said that I meet all the criteria! He's got it in my file now, and has me being referred out for genetic testing to rule out any other subforms of EDS, and other potential causes, but he said that he's pretty confident in the hEDS diagnosis based on everything I brought him. This has literally changed my life, and how every doctor I've talked to is treating my pain and my subluxation complaints. Thank you *so* much for posting this video, I cannot tell you how much this has changed my life. I've been crying in relief for days now.
I'd love to see all these manifestations of EDS next to one "normal" person. I didn't know that hypermobility was abnormal until my mid-20s, so who knows what else I might think is normal that isn't. 🤷♀️
I totally understand that. I had no idea that these things were unusual.
I didn't find out that I have eds until after I lost my leg and had a kid.. So in my opinion is just not talked about enough. I truly believe it's way more common than recorded and in my experience, not enough doctor's know about it.
i’m guessing you may of already seen it but if not, she has posted a video with a person who doesn’t have EDS going through the criteria!!
@@forgetful_hq I couldn't seem to find this video, do you have a link by chance?
@@milesfinnegan6015 of course!! here it is ruclips.net/video/iXnORSBEjps/видео.html
I was diagnosed hEDS last month as a 46 year old guy. Scored 9/9 on Beighton. I had no idea people aren’t supposed to be able to move this way, it’s always been my normal.
Yes, I used to think all the other kids at ballet just weren't trying!
Same. I was diagnosed as hypermobile at 43 but could do all these things today and now realise I actually have EDS.
I always knew I was double jointed and flexible, but I didn’t realize the extent of it until doing all of what they can do. I wonder if I am just hyper mobile or could have something else that is similar. Does everyone with eds have chronic pain? If so I’m wondering if I could possibly have a mild form of Marfan syndrome then especially since I have always been tall and slender and I have longer arms. I messaged my doctor so hopefully I’ll find out if it’s worth looking into and getting evaluated.
@@cic5347 In US try to see a geneticist. Look into chronic pain/arthritis home treatments in meantime if not already. CBD oil orally?
@@cic5347 definitely worth checking out because there can be some serious symptoms of marfans you may not be aware of (heart probs etc)
Best of luck🧡
A retired occupational therapist here. Worked in pediatrics for 51 years and always checked the children’s range of motion. I found that the children with hyper mobility resisted handwriting tasks due to fatigue. I would have the children work on tasks to alert their muscles to contract, such as, “push,pull, and vibrate” , this is the Golgi tendon organ. We hammed modeling clay, move furniture with a push, Dust Buster or hair dryer , and monkey bars. Found that the child improved grip strength doing exercises at least twice a week for a short 10 min. Session.
That's really interesting because I struggled all through grade school in the 80's with hand written assignments. I would fatigue so quickly. I've had to work on my grip strength my whole life.
I was always hypermobile and did that exact kind of therapy for years to improve my handwriting when I was little.
I am also fatigued with texts. I have long thin limbs and carrying things at arms length including my arms all day, makes me seek relaxed positions and I think small controlled movements like text-writing really taxes the heart, especially when uninteresting. I don't even think I could do anything to change it, unless I improved my heart's health from an emotional engagement perspective. Same with my head, has always felt heavy leading to bad posture. Thanks to this comment, I am starting to connect certain things.
I actually have really good grip but I exhaust easily too.
Interesting...handwriting is almost painful to me. Yes, I am hypermobile.
THEY MIGHT'VE FOUND THE GENE?!! I cannot express how excited I am. My DNA is currently in the research pool when I consented for research for genetics when I went to the geneticist in Aberdeen, so hopefully my genes might be out there to help in this research 😊
What is it?! Where do they list updates? I genuinely believe I have it, but struggle with doctors wanting to diagnose me or giving answers in general
@@larinavigil5225 So for diagnosis you either need to demand to see a rheumatologist or a geneticist. The genetic testing for hEDS isn't complete yet, so you still have to be diagnosed via symptoms. I saw a rheumatologist who diagnosed joint hypermobility syndrome, and then a geneticist who modified that diagnosis to Ehlers-Danlos Syndrome
@@NiaJustNia thank you! It’s been such a struggle!
@@larinavigil5225 I run a chronic illness and disability discord, there's people from all over the world on it, so if you want to come to chat or get advice, or just be able to feel less alone in the struggle, I'm happy to send you a link 😊 it's LGBTQ+ inclusive
@@NiaJustNia I have seen two rheumatologists, and after rheumatology panel being negative, both refused to give me a diagnosis. I have most of the classic signs and symptoms.
I actually work in genetics, and at some point we had a patient who potentially has hEDS, and after he left the room, we started discussing and I said “I have more EDS symptoms, than this kid”. Our main connective tissue person in the department evaluated me and said “well, you do”.
I meet those criteria as well ☺️
Seeing your actual examples of stretchy skin etc. makes me feel better about my upcoming appointment to get diagnosed. I'm always sitting at home bending my joints and stretching my skin, wondering 'is this enough or is this normal?' because I simply lack a frame of reference. Sitting here doing the test with you as diagnosed people and seeing everything perfectly mirrored back at me was so reassuring. Thank you!
hey! how did your appt go? i’m on the path to being evaluated and diagnosed and i’m curious :)
I agree completely. There are always these extreme examples, especially of stretchy skin and that is one that was hard to gage. It would almost be better to know how normal skin stretches to know what is not normal.
Just two had stretchy skin. The others are normal.
@@blablatructruc which two?
exactly the same. I've been doubting my hypermobility, stretchiness, and scars forever but mine are just like these people
I just got diagnosed with HEDS on 23/07/21 and I'm 39 years old, it's been a long time feeling like the odd one out so it's lovely to see others with similar issues to me!! 😍
I totally know what you mean! It feels so nice when you see others who are so similar whereas we normally never see people going through this
So thankful you were finally diagnosed! That was around the age when I finally received my hEDS diagnosis, although it was suspected when I was 21 back in 1996. Unfortunately, the rheumatologist ignored the 1996 referral orders and only checked me for Marfan syndrome.
I was diagnosed this last year at age 36- I know the feeling! It's nice to know I'm not crazy and/or lazy (thinks you hear/feel growing up as the odd one out) you're not alone!
@@princeloup5093 Check the Ehlers Danlos Society website for the worldwide directory of doctors who specialize in care of EDS patients. For a GP, finding one that specializes in internal medicine and can coordinate your care with other specialists is key. Also, if you're in the USA, you need to be referred to a pain specialist in order to have your EDS properly addressed. Laws went into effect six years ago that limits pain management specifically to pain specialists, and my rheumatologist had to bump me over to a pain specialist at that time. Physical therapy designed for EDS patients has also helped a lot to reduce pain.
Treatment of EDS is all about mitigating symptoms, and seeing specialists for each area of concern. There are medications that can treat multiple EDS issues; so if one doctor doesn't prescribe it, a different one might. For example, Mestinon (Pyridostigmine) can treat POTS/dysautonomia so a cardiologist or neurologist could prescribe it, but it can also treat gastroparesis and dysmotility so a gastroenterologist could also prescribe it. Another example is nightly low dose Catapres (Clonidine) can treat POTS/dysautonomia, pain, migraines, RLS/insomnia, anxiety, and other issues; so a wide array of specialists could prescribe that one. Finding medications that can treat multiple symptoms is also helpful, since it can reduce the overall number of medications that a patient is on.
Hey, I’m the same age snd said yes to almost all of these. I can’t even get my family doctor to take me seriously and check my concerns. She dismissed me twice saying that if I had this, I would’ve been diagnosed as a child snd since I wasn’t; then there’s no way that I could have EDS. I’m so frustrated and just want to know either way?
My EDS clinic calls the hEDS "bread dough skin". It is soft in a way that is like bread dough so not just texturally soft but soft to the grab, the fun thing here is different doughs have different types of streeeeeetch so it explains the variation in stretchiness as well.
I was wondering why my geneticist was squishing my arm to see how soft or stretchy it is 😂
I have the velvet skin and it's only thing I like about having this stupid thing. At least it's something
@@malanamarie5206 mine racked mine with his fingers too haha to feel the fascia just like the piezogenic papules in the feet..
@@dana102083 mine did that too until then I wasn’t aware that it was all over the body and not just the heels. I always thought the little bumps were normal!
@@malanamarie5206 yeah!! Im a nurse but i had no idea what fascia was..its not well known at all. Its like tiny ruptures because its like cheesecloth..thats how i see me lol :)
I really enjoyed this video! I was always the kid that was doing the splits and sticking my foot in my rib cage to show everyone. I never knew it was something until I was over 40 and started getting hernias. Over the course of 10 years, I got over 10 hernias, including 4 "huge hiatal hernias" that caused my stomach to go into my chest. Not one single doctor suggested hypermobility or EDS. I am 65 now and plan to get a diagnosis as soon as I can.
I have not been formally diagnosed with H-EDS, but I passed all the criteria with flying colors. It actually explains a lot. The "did you freak out your friends as a kid/teen with your flexibility" question really gave me a chuckle, because I used to do that. All. The. Time. At one point, I could bend my spine backward far enough to touch my toes to my scalp, and I can bend the first joint of every finger without moving the others. Looks freaky AF, but doesn't hurt at all. I actually almost made someone puke with my "witch fingers" once. 😅
I bend my fingers 90* when simply reaching out with my palm up to grab things from people, and it freaks them out. That ain’t normal? I mean, I get by the fact that it freaked them out it ain't normal, but still.
i used to be able to touch my butt to my head by bending backwards
Haha! When I was 9 I was flexing the double joint in my thumb and the babysitter freaked out about it. Years later I was experiencing pain and my doctor said “probably joint hyper mobility” and now I just casually have a disability
omg i have “witch” fingers too!
I was diagnosed about 7 years ago. I am one of the few that actually went from "borderline" to "yep it's hEDS" with the new criteria. It didn't happen to many but as soon as my doctor saw the 2017 criteria and we ran through it all again, I am firmly in the hEDS category instead of borderline.
My kids and I were told by their paediatrician that we are hEDS, we’re all freakishly flexible, have stomach issues, joints that crack, pop and fall out of place (we’ve learned to reduce them ourselves much of the time but sometimes a chiropractor or more drastic intervention is required (like that time of bending at the waist to pick up a seedling caused 5 discs to slide on out), chronic pain, headaches, irritable uterus, brutal bruising, and last year my retinas started to separate (for lack of a better description). EDS is quite “the thing” although entertaining to do namaste hands behind our backs, drop thumbs out of handcuffs (don’t ask 😂), and super helpful for washing our own backs and not looking our age 😜
Wow thank you for sharing. It know this isn't easy. I appreciate the positive outlook, despite the difficulties. Are you eyes better now?
Funny how family seems to have a hard time accepting this dx. I look ok on the surface but I have limitations due to this. Now my daughter is showing worse (by far) symptoms. Hope it doesn’t take years for her, with me having the dx as well.
@@Lindamorena no - they have black spots throughout my vision. 🤷🏻♀️ it won’t change. I have to be super careful and kind of freak out a little on the inside when I start seeing stars or sparking. It’s generally “nothing” but I do worry that it can become a bigger something. Life goes on though and I have worked out adaptations around things as best as possible - it’s all we can do to be honest, and living in a bubble is not at all my jam 😅
Do you mean like floaters? I have many of the criteria and just developed floaters and it’s so frustrating
Like black dots that zip around in my vision. They’re like debris/cell material or something? I was like m’kay so can we get rid of those? Short answer - no. I also have those things that look like amoebas but I think those are common in lots of non EDS as well
Would be interesting to see this done with some people over 50 like me, for whom this was not even a diagnosis that existed when I was young and even more hypermobile than I am now. I could do every one of the things on the list when I was a kid, but not so much now, but still have all the horrible joint pain and instability, GI issues and dysautonomia issues. I do pass on 5.
That is in the criteria. If you had a history of it and it’s now “stiff” or locked or feels “arthritic” etc.
@@Little.MissDiagnosed When I got in a room with a PT who knew what she was looking at, I got diagnosed with hEDS in about 10 minutes, actually had an 7/9, but then later got gene testing and I have classical like EDS due to TNXB deficiency. It's crazy how long it took to get this right.
@@HouseKatArmyThe PT has said as much, but for me it's getting the Dr. to see as well. What type of Dr. actually listened to you and ordered a test?! I'm to the point I just want to order genetic testing myself and take the results in but I don't even think that's a thing.
@@MJ-gj6mj I ordered my own genetic testing and paid out of pocket for it, I had to distill out the relevant genes and send them to my doctor and beg them to look at it. Basically. It was my endocrinologist who finally looked and figured it out because I also have adrenal insufficiency which turned out to be caused by Congenital adrenal hyperplasia, she saw it in my gene and it turned out that I have a contiguous gene deletion that spans two genes (CYP21A2 and TNXB) that causes both. But I had to push to finally get it figured out.
I was diagnosed with general hypermobility when I was about 12 because my primary physician thought I might have marphans. less than a year ago, I found out that hEDS is a thing, so I looked into it. it explained so many of the issues I've been struggling with my whole life. I'm still trying to find a doctor so I can get a diagnosis. I'm just so glad I finally have a name for it. thank you for making this video!
Fellow hEDS Dr here. I love seeing all of the research and that it’s being worked on by people who live with EDS. Depending on what my body is feeling like, sometimes I get stiff(I have RA too) but I can do a majority of these tests. My original rheumatologist was actually the one who had me bend and hyperextend to do these lovely tests and it wasn’t until maybe 7 years later that I got my official hEDS diagnosis. I’m really glad that I came across this video and your channel
Why 7 years later?
I’ve questioned this for years but never thought I actually would pass the criteria, but seeing all these different examples is SO reassuring! I’ve suffered in silence and confusion most of my life, and this makes me feel so relieved. There’s an actual answer! Thank you guys so much for making this video! ❤️❤️❤️
I appreciated this video SO MUCH! I had never heard of EDS until this came up in my feed. I watched it, thought “hum this explains a lot”! I went to the EDS website and found a doctor in my area and was just diagnosed with hEDS last week. At 43! This has answered so many questions that I have had about my health, my Mom’s health, my Grandma’s health… and it has given me the knowledge and power to help my children so that they don’t have to go through decades of being told its all in their head. Again thank you!!! 🙏 🙏🙏
I soooo wish there were channels like yours when I was diagnosed with HEDS 21 years ago! I was diagnosed at age 20…after being a competitive swimmer for 13 years (butterfly was my thing!), and after 6 shoulder surgeries had failed. I’ve now had a total of well over 80 surgeries on all my joints (I stopped counting at 80…too depressing). After 36 failed surgeries on just my left shoulder (9 of them being extensive limb salvage), I ended up having an amputation. I am in severe nerve pain (due to nerve damage) 24 hours a day, on top of some pretty severe joint instability/pain pretty much everywhere. Going over all of the criteria, I’m saying yep to almost everything. Ugh!!! 🥴
It is incredibly frustrating…there’s only a couple of people in the medical community in my area who have ever even heard of EDS, so when I have an appointment, I get bombarded with questions. They don’t want to do the research! 🤦🏻♀️ Thankfully I found the one GP locally who seems to have a good grasp on it, as does my pain specialist, but I have to travel 2 hours to Chicago to see any other than those two docs.
Prayers for peace, comfort and healing for you. God be with you!
I have a Dr at University of Chicago. I have to drive there from South Bend, but I won't be able to see well enough to get there after this summer.
God bless you! 😮📖🙏
Ah, now I know why I was banned from learning proper swimming forms from an early age. I thought myself how to swim along with backstroke and other simple ones by seeing others, but I can't do them for very long befire I need to switch back to my weird form of doggie paddle. I mainly just like to float on my back and take a nap since the water is so relaxing. I try to enjoy the water any way I can without causing myself harm.
I'm so sorry that something you were passionate about ended up causing you harm. I hope you find simething that improves your nerve pain.
This was phenomenal Im so grateful for this channel. I’ll be 50 next year and I have had minimal care. I believe I started having symptoms when I was at least around six years old though I was not diagnosed until I was 41 1/2 in January 2014 and even now I have no doctors who understand or have any real clue as to what to do with me most of them just wash their hands of me immediately. I do have a pain management doctor thank goodness but other than that I have nothing. And I have three adult children all who have it two of them pretty severely and one who is now just starting to get it where its negatively affecting her life and she is 32. But it is so hard having no doctors who truly understand the disease itself which makes it very hard to explain to friends and family who don’t understand how all encompassing it is but your channel is so helpful so thank you so much for all of your help more than I can say. Doctors told me from 25 on that I was just depressed and loaded me with pills which was not at all the case. I have severe PTSD now going to Drs and my children all hate drs seeing what I went through to get help even though like the young man in the video Ive had cervical and lumbar surgeries and desperately need shoulder and knee as well. Thank you again.
EDIT: Sorry that this is all over the place Ive had a very rough several days and Im using my phone to write this and at my age its hard to see the small writing 🤣🤣🤣
I feel for you and understand your pain. It is very common especially for women, to be dismissed and disbelieved. It has happened to me numerous times.
I was branded a 'malingerer' and was bankrupted fighting for a fair payout after I developed chronic neck pain from bad ergonomics that my boss ignored for months - in spite of my numerous complaints.
If I had known I had EDS I could have probably avoided the injury because I would have been more aware of me being more susceptible than others.
Most doctors are arrogant and incompetent, in my experience. They just had a good memory and passed exams. Doesn't make them as smart or competent as they think they are and they are held up as all knowing when so many are worse than useless !
I also was diagnosed at 41. I was diagnosed in March of this year.
I am 46 but the doctors told me I probably have h-eds but there is no point in diagnosing me with it.
@@Catlily5 I’m so sorry. I hate it when they say that.
@@trish5111 oh my gosh I agree with you on all of this EVERY POINT! Im so sorry you have had to deal with this kind of crap as well. In my experience with the thousands of doctors appts and doctors Ive seen they are entirely arrogant and self absorbed. They do not want to hear anything they will literally talk over me as Im trying to tell them about documented EDS research. They certainly don’t want to learn especially from some “silly woman” who they think knows nothing about anything (dont I know they are the experts and went to Medical School). The truth is that I’m a million times more educated than any of them when it comes to EDS and i have extra incentive since all my kids have it and 2 suffer greatly. Thank you for taking the time to respond. I truly appreciate it. Sending you strength and healing!
It was interesting to see the criteria demonstrated on multiple people, especially the hypermobility. I've seen videos online of people without hypermobility demonstrating it, which isn't great. I have to agree on the soft skin thing--so subjective! I had to check my diagnosis to see if it was checked. Looking forward to the next video with this group!
I actually think the opposite. I don't think I have EDS but I definitely meet the majority of the hypermobility criteria. I've always thought it was normal, for example, to be able to touch your thumb to the wrist since it doesn't hurt or stretch at all. I've never seen someone who can't do these things attempt it genuinely and I would love to see someone do that. It seems that a lot of them are just demonstrating "how to" do it without actually attempting to see where their own limits are.
@@catinabox3048 A video you might find helpful, here on RUclips, is "The Beighton Score | Generalized Joint Hypermobility (Laxity)" by Physiotutors. The person it's demonstrated on appears to have a normal range of motion (not hypermobile).
The only reason I know that my skin is soft is that people always tell me that. My thought was always that skin is skin. What, did they expect it to be rough? But apparently it's unusually soft. 🤷♀️
@@anyascelticcreations absolutely agree! As they went through all of these criteria, I was just reflecting on my whole childhood and adulthood. Naturally, as I’ve become older, you would think a 38 year old would say, “I used to be able to pop into splits when I was a kid” to still not be something true.
Then as they unveiled all the other things, on top of the little bumps on the heels … I thought it was just something people got when they got older or something, it just really helped me to now seek out help if needed with the pain that started on and off ten years ago that I chumped up to just getting older after years of dance, other reason why I bruise so easily, and teaching my body to not double joint.
But the soft skin one blew my mind. Always had people tell me my skins was baby soft. Again, turned 38 today and that baby soft skin is still there and elastic skin is a little less so (38 + job + slower metabolism makes it a little thicker these days).
Not sure if this means I should get tested and have it on file or wait until there is a problem. Good things to check in when I get my yearly I guess.
Enjoy your soft skin. 😉 One of the pluses of this condition.
@@piddly Yeah, I hear you on looking back at your entire life. Same here. So many of the criteria they mentioned I just thought were normal, too. Like the heel bumps. I thought they were just part of getting old. Happy birthday, by the way! 🎂 As far as getting it checked out, I would say that if you have access to medical care now then definitely do. I gave up on finding a diagnosis for my chronic pain and fatigue while I still had health insurance. I am no longer able to work or pay for medical insurance or to go to the doctor at all. So it would be next to impossible for me to seek diagnosis now. And no diagnosis means no disability. I didn't see this coming at the time. So, if you can get diagnosed now, I say go for it. Especially if this can be considered a disability. Just in case you will need that down the road. I do hope you have a wonderful birthday. And you enjoy that soft skin, too!
I'm 58 and going to discuss this with my doctor. I've been hypermobile my whole life but am now finding many symptoms of EDS. 2 of my daughters have the same symptoms as me. Thank you for all this info that I will definitely take to my Dr.
Thank you so much for putting this video out. I'm in tears seeing how happy, beautiful and purposeful you all are. My daughter and I are pretty sure she has hEDS but none of the doctors or specialist we have seen have gone through these criteria with her. They tell her to bend and stretch things but don't actually go through the whole criteria. They just say even if you do have it it is best not to seek diagnosis because there is no genetic marker, no cure, and it could affect insurability. It is so frustrating because my daughter has suffered pretty much her whole life with a myriad of seemingly random issues that can all be explained (if not cured by) an hEDS diagnosis. When she started learning that there are other people out there like her she said, maybe I'm not crazy, there are other people out there like me and maybe that is why I am here (on earth), to help other kids so they don't have to suffer in the dark like I have. I'm going to show her this video and we'll go through each step, take pictures and share findings with the doctors. Thank you again for your work in this field, educating people, being role models, and demonstrating to people like my daughter that you can make meaning of and overcome these challenging symptoms.
It's sad that getting a diagnosis where you live could affect your ability to get medical treatment due to insurance. It's one of the reasons that I'll fight tooth and nail for the NHS: medical decisions are for medical experts and everyone should have equal access to them. I hope your daughter has been able to get her diagnosis and some treatment.
I was diagnosed with generalized HSD and I don’t believe it’s a downgraded diagnosis. I do have many of the same comorbidities of other people with Heds! UPDATED 4/23/2022: I went to genetics and they diagnosed me with hypermobility Ehlers-Danlos syndrome. I went to see my rheumatologist last year he wasn’t able to do the full assessment for heds.
I was diagnosed with generalized HSD too because I failed the Beighton test. But I have hyperlaxity on my hips or shoulders and that's not a part of the Beighton test which is honnestly very confusing and problematic.
Last week my sister was diagnosed with a hEDS and so now I tick a new box that automatically evolve my diagnostic into a hEDS. My difficulties and sufferings didn't change. So yes, I think we have a problem with the New York 2017 criteria.
Same, I've been told to push for eds tho. I'm not sure if it's worth it mainly as I don't know the differences 😅 I just know I dislocate and get pain lol
Omg I did the test with you guys and literally cried when I finished it and heard all of you guys said yes to chronic pain. It is the day I find out why I have so many symptoms more and more severe now. And it is the day I know I there is a community out there going through the same things. A life changing day I would say.
I am right there with you! I have almost all of the symptoms that they demonstrate. I also have issues with my joints popping out and back in. When I was little, my hip would pop and I would cry and try to move it back. It still happens!! I would even ask my mom if it was normal to hurt and everyone just thought I was growing. 😢
This video randomly popped up in my feed. Out of curiosity I followed along with everything and answered all the questions and physical tests and it explains so so much about what I've been dealing with my entire life. I need to take this to my PCP and get officially tested for H-EDS. Thank you for putting this together.
I’m autistic and I’m really considering that I have hEDS or HSD. I’m very hypermobile, have pain on my knees pretty much 24/7, get random pains on my ankles/neck/elbows and dislocated my knee when I was sleeping; I also have intense gastrointestinal problems and circulation issues. I don’t think mine would be too severe, but the pains I have on my knees really bother me (although I’ve had them all my life so I got used to them when they’re not too intense. When I was a kid, I used to think that you could break your legs backwards and lose your shins if you extended your legs too far out when you were standing, so I would try not to stand “too hard”. I guess that says a lot lol, I think I should get tested)
It sounds like it’d be a good idea to mention it to a doctor, especially since you’re dealing with so much pain! ❤️❤️
That's interesting that you mention you're autistic and have issues with hypermobility. I'm the same, both autistic and hypermobile. This excellent video has helped me to kind of join the dots finally. I'm also going to look further into this. Good luck with your own investigation.
Same!!!
I'm autistic too and known I probably have hEDS for a few years (but never gone to a doctor about it). I've heard it's fairly common for the conditions to occur together.
@@saphirefoxirlI haven't heard that. I've heard of anxiety disorders and depression overlapping with EDS, but not autism.
Y’all this was so helpful! I’ve spent the last several years trying to figure out what’s going on with me. Today I saw a new rheumatologist and she’s convinced I have HEDS or general hypermobile joint disorder. This is the only video quite like this that I’ve seen, and it confirms in my mind that she might very well be correct. Appreciate you guys!! Hope you’re all doing all well as possible ♥️✨
I've been having issues with chronic joint pain and musculoskeletal pain for YEARS. In the past year, I've actually been trying to figure out whats going on because I've had new symptoms arise like shoulder tendinitis, muscle twitches, and numbness and tingling (which has gone away already). I've been through 2 rheumatologists, an orthopedic doctor, 2 neurologists, physical therapy, occupational therapy, pain management clinics, and endless numbers of tests this past year alone. The common denominator is that I am definitely hypermobile and have hypereflexia which could be causing all the chronic pain. I've gotten referred for connective tissue genetic testing (which no clinics are doing around here because of staff shortages due to COVID). I don't know that its EDS but I can say that hypermobility is a bitch and causes so much debilitating pain. Its such a shame that our healthcare system isn't built to treat patients like this
Edit: forgot to add I've had worsening gastrointestinal issues and going to see a doctor for that too. Everyday I swear its a new symptom 🙃
Just curious to see how you're doing now!
@@omgeeash oh wow thanka for checking in! Haha I was officially diagnose with hEDS which answers a lot of questions. There is still a lot that is unanswered since all my test results come back normal. I ended up finding an EDS coah online that helped me a lot. I realized I was gonna have to really do the work and find my own resources and pay for them out of pocket when I have the luxury to do so. Its nice to have an answer and knowledge on how to better manage my symptoms.
Hope you're doing well 😊
wow this has been exactly the same for me. Ive been struggling to get any kind of help :(
You are describing my life. I’ve always been hypermobile my mom was hypermobile. Her father was as well. So I may look into it. Question? What do docs do about the pain and the gastro issues?
@@user-kk4zz8wn1w Hi what have you been doing to manage now? I think I will have to lay out of pocket to get any answers and/or relief honestly. I don't even know where to start but so ready to help myself somehow! I've been to rheum, ortho, PT, PCP etc and so on. Tired of the same runaround!
At almost 47 I still pass nearly all of this. In my mid 20s I saw so many doctors trying to figure out why I hurt so much and always feel so sick. Lots of stuff was suggested. And I got as far as being diagnosed with hypermobility. But I've never even heard of EDS. How is it possible that not one doctor ever suggested this? I eventually gave up on finding any further diagnosis. Though I almost certainly have comorbidities as well. I've never been treated properly for anything because I lack diagnosis. I'm a bit frustrated with the medical community, to be honest. Yes, it is a tough journey for sure.
Thank you for this. I feel like sending it to the rheumatologist I saw about 5 years ago who basically said I was full of crap while telling me that the tips of my fingers were hypermobile. (He refused to do anything without sending me to a geneticist, and he didn't want to do that.) And hey, I didn't know those bumps on my heels were anything! I'm 53, and it would be so nice to finally have something. I've hurt for so. d***. long.
That was fun watching you all going through the criteria. I remember when the new criteria came out, I thought maybe I didn’t really have hEDS. I guess I was hoping I had something fixable! But I met the new criteria, too. I had never noticed those white things on my heels before! I was 54 when I was diagnosed. I wished I had known younger. I happily donated a white coat in memory of Jaquie. Keep up the great work. ❤️
Also, this video makes this screener so easily digested for folks that don't understand clinical terms. Very much appreciated!
I feel like finger prints and struggling with digital fingerprint reading could be on the diagnostic criteria as well. My friends and associates who’ve gotten together and share our experiences with H-EDS struggle regularly or at least periodically with fingerprint scanners or fingerprint identification on a lot of devices due to the velvety+hypotension aspects of our skin attributed to EDS. For me it depends on the humidity as the extra moisture and oil can assist somewhat and make it a little more reliable but even then I can’t use fingerprint identification on devices that aren’t mine/used to my finger with its unidentifiable fingerprint. I have a friend who’s workplace has fingerprint and hand scanning for door access and she requires a coworker to accompany her because it just won’t read or authenticate her fingerprints or hand. This is a shared experience enough from my observation that I feel like perhaps it should be looked into with diagnostics as I don’t know of other disorders which cause this
Have you tried breathing onto your finger to give it moisture? When my hands are too dry my fingers don't scan properly.
Wow! Someone close to me, had fingerprints taken years ago, and it was extremely difficult to get prints, thanks for mentioning this,
I was diagnosed at 28. I did the test with you guys and definitely passed. I had my husband do the test as well and when he couldn't do something I though, "oh that's not normal you can't do that". 🤣😂
I really enjoyed this. Thanks to all for participating! Can’t wait for the next one.
So glad!
I’m 61 and have finally gotten my diagnosis of HEDS. I’ve been under care for back pain and joint pain since 25 years. This video set the stage for me to figure it all out. THANK YOU! For bringing awareness! I’ve submitted DNA sample to test for other things trying to find answers for my fragile veins that blow up on me. It’s been a nightmare to just find someone who will help getting answers. I’ve had a minute man spacer put in my back L4L5 but woke up during surgery because I busted my vein from the IV and it took them several minutes to find another vein to put me out. Not a pleasant experience. PTSD is real! I now have a port to access my veins.
what a great way to educate and yet keep it light hearted! Such a lovely group of people-you cannot watch this video without smiling-THANK YOU and good luck to each and every one of you.
Its always interesting to hear about the family criteria too as so many forget that it most commonly comes from somewhere. For me I was diagnosed first but my mom was at my appointment and we were able to identify it back several generations on her fathers side based on their symptoms/surgeries etc. it also explained so much for my mom about her body and pregnancy complications that were all suddenly explained by the diagnosis.
ALSO so cool seeing so many hEDSers all together!
I’ve been going to doctors since my early twenties with joint pain, fatigue, headaches, & all the things hEDS. Basically, I educated my PCP to get a fibromyalgia diagnosis 15 years ago & a couple of years later I discovered that EDS existed. Same PCP diagnosed benign hypermobility syndrome. I bounced from rheumy to pt’s, to neurologists, with no relief ( did more harm, actually). Last year I was excited to see a local rheumatologist on the EDS website, so I made an appointment. He LITERALLY said “your elbows don’t bend enough for EDS”. It wasn’t until I stretched my neck skin that he suggested genetic testing for classical type. Then he suggested pt-with whoever I thought was convenient-no referral to a specialist! I was so disappointed, frustrated, & am now a 51yo with all but about 4 items in this video & a chip on her shoulder 😣
I can relate. To all every bit of what you have been through. I don't even want to pay for insurance any more. I have never heard of this until now. Not one doctor has even mentioned it or looked for it. They were happy to call it fibro and write a prescription for lyrica. I tried to take it and decided it was better to just suffer from "unexplained extreme pain, fatigue and digestive issues "
I love how energetic and positive these kids are :)
I just watched this, and I passed on every test! This explains so much. Thank you for posting this ❤
Needed this. I'm going in Monday for an official "do we think this is worth pursuing" thing with my doctor on Monday, who is good and understanding and patient, but I'm still terrified to get the "nah, you're fine" haha.
good luck!!! I hope they can either rule it out or diagnose you :)
Same, my doctor is saying I just have hsd. My private physio says I should push (they have eds and was the one who was concerned and told me to get looked at) but idk
How did it go??
@@mlejb4 Ah! Well! My doctor set me on a path of blood tests and evaluations to rule out things like rheumatoid arthritis and stuff. Still waiting to hear back, and I have a follow-up next week
@@TheAbbyNormal that sounds like a great start to rule out things for section 3! Did they do the beighton test?
Thank you for explaining the testing…being a woman of 59yrs, I used to get teased about my mobility and flexibility during my school years. I can still do most of them 😃
Same I'm 59 and I've never heard of this before I pass all as well
I work as an occupation therapist. I found this so helpful as a clear way to check and see if a child with hypermobility should be referred to a doctor for further evaluation. Thank you!
I dont know if i should laugh or cry knowing that my knees actually go even further back than the omes you all showed….time to up my joint-muscle-support-strenght exercises methinks!
Same
It’s really interesting t see how different people are even in one family.
totally!
Are they all of the same family? I couldn't help thinking of my own family watching this, I'm the only boy with 4 sisters and we've all sat around comparing our strechyness before. Only my youngest sister has been diagnosed with eds, I don't think any doctors knew what it was when I was a kid, they just said growing pains.
You are all so much fun, whilst educating us at the same time! I loved how you did this. I'm 56 on Sunday and could do all the mobility tests. I have shared this link w/ the rest of my family to find if any of the others are just hyper-mobile or perhaps have a greater issue. Thanks!
I’m 67! I love love love you all! What was a fun party trick is crippling me. Thank you♥️ for putting this video out there!
So interesting! When I attended massage school in 99 I created my own massage techniques because my fingertips hyperextend. As a result my work is a combination of myofacial and my own creations which has made me extremely popular because of my unique approach that works quite well. Today you have shown me my hands are extremely hyper mobile although the rest of my body is normal. I’m so glad I recognized back then that a normal approach to my chosen profession would have caused some serious arthritis and a short lived career.
Last year, a rheumatologist said I had “benign hypermobility disorder” and that he couldn’t definitively diagnose hEDS because he couldn’t get a good look at my scars. Then I went back to my PCP and she totally downplayed it and said one doctor will call symptoms hEDS and another will call it fibromyalgia. A new rheumatologist said he didn’t believe I had hEDS but that it didn’t matter what he thought and again, labeled it fibromyalgia even though I don’t have the typical fibromyalgia trigger point pain. It’s so frustrating!
Neurologist diagnosed me. Now I'm off to a genentics dr.
@@theresatrimble7259 maybe that needs to be my next stop! I had a follow-up with my rheumatologist today. Stood my ground and asked to have hEDS put in my chart or have him run through the diagnostic criteria and prove me wrong. He refused and then discharged me as his patient.
@@heathermarchese4371 its gonna be a battle . He has decided to not make it a clinical diagnosis. 😡
What is this game .I'm 64 been batteling this for 11 years. Don't say it and give me info then not satnd behind what ya said. But I'm not gonna give up . Im just not.
@@theresatrimble7259 omg that’s awful!
Chiropractor scored me 6 as a 51 yr old and sent me to gp. Gp sent to spine specialist, he looked at my elbows which go way past and knees and can put hands on floor when bending. Cant bend thumbs or little fingers and he said I scored 1 and discounted it. Have stomach and lung issues, muscle spasms. Had popped a hip out 5 yrs ago. Am really worried as feel I don't have long left and now have this dr who is not a specialist in hyper mobility discounting it all.
As a hEDS’r, just watching the thumb stretches “hurt”… I had surgery 7 months ago to internally reattach my right thumb, and am currently recovering from the left thumb’s surgery 4 weeks ago. Careful, all! ❤😢
This was awesome to see. I was diagnosed in my early 40's by a vein specialist, who has transitioned to diagnosing lipedema in women, who tend to show signs of hEDS in the majority of the cases. I had no idea about the scars! That was really neat to see that y'all have scars like me! I didn't know that was a thing. It is a challenge when it comes to doctors, and I can only hope they will continue to learn and acquire knowledge about things like hEDS. I'm also autoimmune and have been since I was about 3 years old, when I started to show signs of vitiligo. As I got older, more and more issues have compounded, I have RA, I've dealt with IBS for years, I've had women's health issues, including a huge amount of adhesions inside my gut after surgeries. It's amazing how many other comorbidities combine in many cases.
i love this video and this channel, to me it shows that even though this is a painful disorder and these peoples lives are affected pretty bad by this, they can still find humor and happiness in their conditions. i aspire in my own hEDS to continue to not let it drag me down so much. thank you for the lovely videos you make.
Wow, how did the rheumatologists miss this in me? They just said hypermobility. I also have MCAS, and likely POTS. I am looking forward to these conditions being united as a single disorder by the medical community, because we are all coming to diagnosis of all three from one of those disorders. I've spoken to two immunologists in Melbourne who said they're doing research on the triad.
I have the same trio. It sucks trying to get treated in the US. MCAS is what I have e the most issues with
Have you had yours your entire life or did it pop up recently?
@DECDEC1220 I've had it my whole life for sure BUT it started getting worse at 24 then again at 26. Then by the time I was 30 the mcas is the worst thing I deal with. The pots seems to piggyback on the mcas
Went through this with y'all and I passed - I've been suspecting this for years now, but so many doctors that I've seen have been absolutely clueless. My primary sent me to the Rheumatologist and they diagnosed me with pre-Lupus. The same primary that said 'yeah maybe' when I told her I was suspecting it and gave her my reasonings. Some doctors are insane.
Same lol, I always get quick checked but since I can't touch the floor they discard it immediately
@@plant_12 That is crazy because I don't have it and when I was pregnant I hurt my knee (I do pass the knee test/but everyone passes some of them) and because I couldn't bend my leg I couldn't put on my shoes or tie them. So I kept trying to get there as I hated being pregnant and barefoot- literally.. Within a month, I could touch the floor with both hands and I was 9 months pregnant. And they dismiss you because of that one sign? I hope you find a better doctor.
I just found about about EDS a few months ago. I passed all these tests.....i used to show people how flexible i was because it freaked them out, lol. I was also just diagnosed with fibromyalgia. I have an appointment with my GP in about two weeks and ill be bringing this to show her
I was assessed for hEDS and was diagnosed with hypermobile spectrum disorder because I juuuuust didn't meet criteria. Its frustrating to not meet the criteria due to no diagnosed family history or history of dislocations. I still truly believe I do have hEDS because I have researched so thoroughly and its the only thing that explains all my symptoms. I am also suspected of having PoTS. Thank you so much for making this video!
Interesting video as it's nice to see the degrees in various people. However, I would love to see the difference among people of all ages and not just those in their 20s. Those who get stiffer and tighten up from keeping their body upright for decades would be a better comparison.
I’m 56 and not much different from how I was 20 years ago when I started to collapse from exhaustion, but I keep up the momentum by exercising every day. I avoid most of the party tricks and I’m sure it has helped me stay relatively stable.
It can be a painful deal. Never been diagnosed, I got "you have some genetic disorder" i went to an orthopedic doctor. And that was it. 🥺 I live with it as good I can. Kinesiology tape helps a lot.
Oh my goodness, kinesiology tape has saved me so much pain.
Thank you for this channel! This video popped up, and I remembered that my little sister was checked for EDS like 15 years ago, but she didn't get the diagnosis because she didn't have very stretchy skin. I realized I could do all of these hypermobile movements. A few moths later now and me and my sister got the diagnosis hEDS, and my mum will probably get it soon as well. We have been trying to find answers to our many symtoms. Now we finally know what is wrong, and hope to get some help. Thank you for your work!
This is such an amazing video! I wish all doctors had to watch something like this! I feel like hEDS is one of those conditions where I'm constantly doubting myself and my own diagnosis because of how differently everyone with the disorder presents. So, thank you!!
I actually started looking into this a couple years ago and have each of the signs mentioned minus those affecting the aorta. I have been diagnosed in the past with ligamentosis laxity and it makes perfect sense. Thank you for this!
I just subscribed. I literally feel like I could be best friends with every single one of you. I am formally diagnosed. Something my rheumatologist had me do was my hitchhiker thumb, but also when he was looking inside my mouth, I accidentally touched my tongue to my nose out of habit and, he was like oh my gosh you also have “Gorlin sign” and I was like ..What? So many different things coming out and I’m just so thankful. If I was well enough to do what you guys are doing, I would. I also am pending lupus dx :( I know we’re learning so much so fast about this disease and I’m so thankful for you guys. But this video inspired me to make a video of myself doing these things so that when doctors ask, I can just give them a little photo book of pictures with me doing it (showing my face) So I don’t have to repeat them and get in pain again! Which is genius so thank you!! and if that’s not enough, I’ll just keep it on video on USB! Or my phone at least..
I’m gonna watch all your videos. I feel so much less alone.
I know that there are people like me out there, my identical twin sister being one of them, (can you imagine? When we were younger it was like “hey this is normal right?” And the other one would be like “yeah, that pain happens to me too; that’s normal” or “yeah I can also do that weird thing; it’s normal”)
it’s actually weirdly comforting to see you guys all together… It really lifted me up. And I checked my foot for papules and… now I know those are there 🤪
I have 3rd degree heart block congenital form, which is quite rare. I have a pacemaker for it. I also have dysautonomia, but the kind is not specified. I have a general doctor who listened to me and is looking into the heds criteria. He said It looked like I hit all the boxes, but he wanted to read more. I've had quite a few sublexations/dislocations. I've popped my shoulders out, my collar bone (from trying to do a pushup), I had a partial knee dislocation from a fall in high-school sports that needed surgery, my hips rotate out of place, as well as pelvic rotations, and recently my ribs have started slipping out. My lowest rib completely migrated and was stabbing me in the side. I also went to the er last Friday because the pain in my body was so severe I couldn't stop crying. I'm so glad a doctor listened because I'm hoping heds will make sense of all these strange pains. I have plenty of other stuff I've seen the doctor for, but I've typed enough of an essay.
An interesting thing that my college art life drawing/anatomy professor taught me: hyperextension in the elbows is much more likely to happen in females than males, so it's not terribly surprising that he wasn't able to do it in this video!
It was something that came up in class because we were discussing the many ways that bodies vary and how to actually pay attention to the shapes and poses you see, not what you *assume* you see or what is assumed to be "correct" or "normal."
My elbows can hyperextend backward a LOT and it was always something that made me self conscious because people would always point it out but hearing that from the professor did a lot to make it feel more normalized
i was diagnosed with MCAS this year and i'm in the process of being diagnosed with POTS and i am also pretty certain I have some sort of connective tissue disorder. I've barely gotten doctors to listen to me about the heart symptoms and MCAS, so I've been reluctant to mention my symptoms. I appreciate this video, it was very helpful, and I will ask for testing for connective tissue disorders soon. take care everyone
I had my first symptom (my shoulder dislocated) at 16 months old and was diagnosed last week at just turned 56. 🙈 my life now makes sense.
I remember as a child telling my mom about how I can do the splits with my fingers. She replied that she couldn't do that but was able to touch all of her fingers to her forearm when she was a kid. So, I attempted to do it for the first time and was pleasantly surprised because I did it effortlessly with no pain. Now, I do not have EDS; I just have very flexible fingers and wrists.
This video was very interesting. Thanks for sharing! 🙂
This video was interesting for me to see. I’ve been suffering with hyper mobility since being about 3 years old. Then I’ve been fighting to try and get another diagnosis as I have constant joint pains, 6 surgeries for recurring dislocations, but was told it was fibromyalgia and I just have to get on with things 😓
Sounds like it might be a good idea to ask about this!
@meganroach do you have an email ? We have a similar story and i was trying to find someone with your circumstance to talk to them
Me too! Love that I take multi fibro meds and they don't really work, but I pass these tests.
When my friends started having kids, I learned babies often have to wear mittens to keep them from cutting themselves with their own fingernails...they looked at me like I was insane when I casually mentioned I still have that problem. This was pre-diagnosis and I assumed everybody just sorta slipped and gouged themselves open with their own nails now and then. I have a number of small (atrophic, naturally) scars on my hands thanks to a combo of clinically "soft velvety skin" and dyspraxia...
I don't have this problem/illness (everyone passes some of these things of course), but I do cut myself with my fingernails and once scratched my cornea in my sleep with my fingernail.
@@pippadawg7037 OUCH--yeah this is basically my nightly nightmare!!
I've started looking into ADHD, then hyper mobility and now I'm at hEDS and pots. I'm dizzy, can't stand for long times, have pain in almost all joints and a lot of muscle pain and unexplained stomach issues for a few years now. Before finding out these conditions exists, I was just told I'm lazy, don't exercise enough and my nutrition is at fault. This is so validating rn.
I clicked on this because I didn’t know what it was, but you were all so engaging I watched the whole video. Great presentation.
I know this video is old now, but thank you for helping me not feel crazy. My pcp refuses to test for it and tried to tell me, that the only test they could do was by taking a biopsy of my tendon. I’m happy to learn there are other ways. And I definitely passed almost every test you guys did.
If your Dr refuses to do possible tests, have you considered getting another Dr?
@@bakerwannabe4435 Yes, but I’m afraid most of the doctor’s offices I have spoken with don’t test for it. The closest Dr. I found, that will test for it, is 3hrs away in a different state.
I’m so glad y’all made this video! I was recently evaluated for hEDS by my geneticist, and I’m pretty sure she didn’t check for soft/doughy skin, narrow palate, or Strindberg thumb correctly 😭 leaving me 1 question away from passing the criteria
Thank you for making the distinction between EDS and common hypermobility! It's really important! 😊
6 months ago my daughter came to me and said she wanted to get evaluated for this. I looked at a few symptoms and wasn't to convinced it fit. I have A LOT of neurological issues. I have small fiber. Had the fibro diagnosis thrown on me in 95. Dealt with 30 years of gas lighting. I push myself threw pain and disfunction, until my body passes out... but I recently met a friend that IS diagnosed with this. And as I'm telling her mu issues she tells me to get tested... but that my neurological issues seem to not fit...
So I decided to do some research, and I found your video. Being 5 interns in a study about it and having it I'm figured probably pretty legit info. I'll be 50 in 3 months. My pinkies passed, elbows passed, pretty sure my knees pass. I can Also twist my arm 360* and used to love freaking my class mates out in band by doing so on a music sheet stand! I would put it at the perfect height and spin.... until my fingers were pointing forward again lol.... when you said it was way more then JUST hypermobility and started listing off stuff to include autonomic issues.... it pretty much told me... I'm on the right path
Ahh this is such a cool video!! I finally got to see a geneticist this week and I'm getting genetic testing done 🥳 they said I'm definitely Hypermobile though 😬 goes us flexi folk
I love this, thank you! I am about to turn 30 and only just found out about EDS the other day. Up until now, I thought my chronic joint pain was normal (it's amazing what we can make ourselves believe, isn't it?) and I tick off almost all the criteria for EDS. I have requested an appointment to get checked out and, I assume, diagnosed!
I really appreciate you always saying the fact that some people diagnosed with Hypermobility Spectrum Disorder can have hEDS. I was diagnosed with Hypermobility Spectrum Disorder in 2019 (after 8 years of misdiagnosis). My beighton score is down by one point... Because my hands aren't hyper mobile. I think a lot of that has to do with my wrist being incredibly unstable, so stretching my fingers immediately creates shooting pain in my wrist... but I digress. But I think that's the one thing I wish was different about this test. That it took into consideration other joints. Like the fact that my hips, ribs, jaw, and shoulders sublux or dislocate completely on a day to day basis. Or the fact that my spine twists all over the place (including major neck issues) .... I also have POTS, crazy digestive issues, mitral valve prolapse, my intestines will descend, incredible fatigue, and skin issues... That scored me above on the other parts of the test... I guess in the end the diagnosis isn't what is the most important, but I do wish doctors would take Hypermobility Spectrum Disorder as seriously as hEDS. Because I myself don't care what my disease is called, but let me tell you its not just some flexible joints... (I'm 27 now and started having issues when I was 18)
Thank you so much for this video. I have a family member facing the same HEDS . You have spoken on everything that they experienced. Day to day is difficult !
I heard that a lot of people on the autism spectrum sometimes get diagnosed with hypermobile EDS or with just hypermobile sometimes as well
Not surprising. I don't think I have eds, after watching, although I do have some of these traits. I'm on the autism spectrum.
I don’t have EDS but I do have hyper mobility and I have aspergers but I also have ,low muscle tone
Really cool and informative video. Is so great to know and see more people at one place. Your channel helps so much. Right now struggling with heavy fatigue and pain on arms and legs
Very interesting! I am 61 years old and I had no idea this was a real diagnosis! I have had very soft skin; people have always wanted to touch my "baby soft" skin. This explains a LOT of my criteria! I can place the bottoms of my feet together and my knees to the floor. In this position I can intertwine my toes like one can intertwine their fingers. In January 2015 I had a fall in which I received a torn (shredded) meniscus of my right knee which was surgically repaired. In February 2023, I broke my left ankle, both sides and received plates and screws. I also broke several metatarsals on my right foot, which has left me with a Spock salute 😂, and...messed uo my right knee again. Arthritis and bone-on-bone will require a full replacement.
As I said, just from your video, I am convinced that I have this syndrome. Thanks for sharing! I hope you are all doing well!🩷
I just subscribed!!! I’ve got EDS, POTS, GP, MCAS, and a bunch of other diagnoses. This is great! Thanks 😊
Wow, this is the first time I've heard the heal papules mentioned! I never knew it was abnormal. Now I understand why I have them. I can diagnose myself, but getting a diagnosis from a doctor is nearly impossible, especially in a rural state!
The papules are actually extremely common. Idk why they are on the criteria but more than half of people without EDS have them hahah so it’s not abnormal at all! It’s just even more common in hEDS. Hope that makes sense ☺️
It's so interesting about the narrow palate, I had my first premolar removed when it came in to prevent crowding problems later... So it's not obvious but there would not be room in my mouth for all my adult teeth!
I watched this video. I can touch my thumb to my forearm on both hands, can bend my pinkie back past 90 degrees, both of my elbows bend over 10 degrees, my knees both bend backward and I have heaps of photos that look so weird in tight slacks because when I stand they always do that, I can easily touch the floor with my legs straight even though my belly should be in the way. I have struggled my whole life with injuries to my joints. When I was a kid they called it double-jointed. I always considered it that. Strangely enough, I literally have every single thing you put in the video and it's insane that doctors missed this for my entire life. It really blew my mind. I went to my doctor and asked her about EDS. She then looked into my history, saw the hypermobility, and then started looking at my other issues that we've been trying to diagnose. And is now trying to get me tested for EDS.
So grateful for this. I am 42 and just finding out 😮 It answers so many questions.
I thought I had mild hypermobility but watching you guys do the Brighton made me realize I'm a lot more bendy than I thought haha my knees are like
Izzy saying “my fat ass wrists” I felt that in every bone in my body 😂
😂
Did not even know about EDS, unlikely to have it (although slightly hypermobile, I passed most of the 1st section), but watched this just for fun. Great video! It's nice to see a group of friends just talk and interact about your shared experiences.
Thank you for making this video. I’m not sure how it ended up in my thread or what made me watch it but I will forever be grateful that I did. I was diagnosed with hEDS just two days ago finally answering all the questions I’ve been begging for answers to for 42 years. I did all the criteria along with you all then went to the EDS website for a print out of all the criteria and made an appointment with my GP. Had already had so many other things tested for and eliminated so once I showed the criteria it was an immediate yup that’s what you have been suffering with. So now I need to follow up with a cardiologist to make sure it isn’t negatively impacting my heart. Even if it is I will forever be grateful to you all for leading me to the knowledge I needed to move forward.
I wasn’t diagnosed until 2 years using the 2017 criteria. I am 39 now and have to use a wheelchair and my spine and hips are so worn. I am still super hypermobile but as you get older it causes osteoarthritis,scoliosis,nerve damage,many of shoulder and hip operations plus Advanced Degenerative Disc Disease plus lots more other issues. I managed very well with hEDS until I hit my late 30s where the pain became chronic and my mobility is dreadful ☹️
Same. Have you found anything that helps?
In your next video would you consider having each person address what they do to treat their diagnosis? I have pots and eds- I was diagnosed December 2019. I tried treatment for pots which wasn’t working for me but no one ever told me how to handle my eds other than pain management. But I worry about things, like damaging my heart. It would be nice to hear how each of you maintain, what specialists you see & how often. Thank you!
My daughter has H-EDS & POTS. She tried to join a cheer team in 3rd grade and her elbows would hyper extend so far when she put them up in a "Y" position that it made people cringe.
Due to POTS, she had a terrible time with syncope and brown outs, missing lots of school from illnesses that always hit her so much longer & harder than other people experienced. Common colds would wipe her out. Too much or too little sleep would leave her fainting. Hot showers, running, getting up, sitting down, it all made her have brown outs or fainting.
Multiple doctors, including a pediatric cardiologist just poo-pooing her health issues saying "don't worry, she'll grow out of it by 17 or 18". She was finally diagnosed around 21 by a neurologist.
Per his instructions, she drinks a LOT of water & consumes a LOT of salt to keep her blood pressure up and she takes a mild dose of a blood pressure lowering medicine (propranolol) that at such a low dose does not change her BP but it does keep her heart from racing out of control which would cause her to faint.
She takes her health very seriously. She eats a lower carb diet - which keeps inflammation down - and she keeps up on her cardio & strength training, and she is a physical therapist assistant - a very physically demanding job as she is moving around all day long. She is doing so well today, at 26, that she even does aerial silks class (acrobatics & stretching/posing up in the air suspended by long silky fabrics) This is the kid who couldn't even jump on a trampoline because it would hurt her hips & knees! She scuba dives on vacation, and regularly cycles 20-50 miles per week. Her life today is a total 180° turn from her first 20 years. With the right doctor supporting you through this there is so much hope & possibilities. I wish everyone with POTS could have such a good outcome.
❤❤❤🤞🤞🤞
@@luvfunstuff2 That’s so wonderful to hear! Very happy for you and your daughter, thank you for sharing :)
@@lindseym3810 you're welcome! I wanted to convey that life could be better if you are willing & able to try things along with finding a good knowledgeable doctor. When he met her, she already had an associates in health degree and had recently enrolled in an accelerated program to have a career in physical therapy. The problem was she was still having brown outs & syncope and we weren't sure she would be able to finish & then actually work in this field. She was just about exhausted to the point of quitting or having a nervous breakdown!
The doc was surprised at how much she had accomplished so far and was frustrated by our mistreatment by so many docs before him. He was confident he could help her excel and live the life she wanted. She is careful with her joints and pushes herself to stay active doing things she enjoys with others - even does ballroom & swing dancing. When she hits a wall of exhaustion (because of course they do sometimes happen) she knows to take a rest day, but she's careful not to fall into too many in a row lest she lose the conditioning she has achieved. I'm so proud of her effort and that she was lucky enough to have good friends & recent support along the way. Thinking back to 9th grade when she was at her worst, I began to worry what her life would be like. It wasn't easy but determination to have more in life helped get her to this point... that and the good doctor.
I had to do so much research to find the *only* neurologist in the state of Missouri that specialized in POTS. It took another 6 months to get accepted for an appointment. Please don't get discouraged and do keep moving forward, seeking answers and trying things. Changes will happen for you too! Sending well wishes & strength your way! 💞😊💞
this really is nice to see i am not alone with this. trying to find a good doctor to get officially tested, but i passed this test! thank you for sharing
Thank you all for participating. It's good to see how differently it can present. I have had a lot of joint issues and still don't have a great explanation for it. I've been told Fibromyalgia, but some doctors think there is something more. Still to be seen, but thank you all for your help for those with EDS.
Thank you for this! I have an appointment with a rheumatologist coming up, and suspect I may have hypermobile EDS. This helped ease some of my anxiety about the criteria (I meet most of them,) and how to talk about it with the doctor. I was diagnosed with fibromyalgia at 19, but have felt like there’s more going on for a while. (I’m 36 now.)