My hamstrings also tend to be very tight, which is fairly common in EDS people. If my hamstrings get too tight, they pull on my knee joints and cause knee instability and pain. I've found that keeping my hamstrings as stretched out as possible has greatly reduced my knee pain and has stabilized my knee joints.

@LifewithStripes

2 жыл бұрын

I have actually found the same to be true for me! But it seems like no matter how often I release them, they are always tight right away 😂

@taysresilient

2 жыл бұрын

this is so helpful, i’ve struggled with tight hamstrings my whole life too!

@kysscum111

2 жыл бұрын

I used to be able to do it from time to time too. My hamstrings have sadly gotten tighter but I'm still able to do it, somehow

@chloewangensteen7660

2 жыл бұрын

Omg I have the same issue!

@debpaskall

2 жыл бұрын

Same issue. I stretch them out every day or my knees and low back hurt even more.

I wish eds bruising criteria took brown skin into account. I’m way too dark to see most extreme bruising on myself, nevermind light purple bruising. You don’t see bruising when I get shots or blood taken, when I’ve gotten cut, hit on something really hard by accident, nothing like your bruising. I’ve had an exercise pull bar on a door frame fall on my head and ran head first into a brick wall, still nothing. Essentially, it doesn’t come on with actual trauma, and definitely doesn’t with little to none of it. It makes it harder to get diagnosed because everything isn’t as visible on everyone , so you get dismissed .And sidenote, I don’t have any visible blood pooling with pots,but it’s definitely pooling. It’s just a thing medical professionals don’t think of.

@IzzyKDNA

2 жыл бұрын

Absolutely. I'm angry that it doesn't indicate what to look for in brown and black skin...this kind of bruising is clearly going to look different from white skin, yet it only takes white skin into account.

@fibromiteready2fight809

2 жыл бұрын

@@IzzyKDNA yup :( .

@jericabarge4787

2 жыл бұрын

Yes! It took decades of me going to doctors and specialists to finally get my diagnoses. It’s still a fight to ‘prove’ my external symptoms when they present differently than a textbook case.

Me: Follows along with the tests in the video Me, 10 minutes later: "why are all my joints hurting?"

i'm so glad mickey brought up the muscle tightness as compensation for joint laxity!! i've felt like i've had that for a while but i had never heard anyone else talk about it, so it makes me really glad to know i'm not alone there. i can't touch the floor at all despite my hips and knees and ankles all being pretty naturally hyperextended.

@kikitauer

2 жыл бұрын

Yes me too. I have once been to a very bad doctor whose breath stinked like alcohol. He only let me do the hands to the ground test and said "You are not hypermobile at all." He then proceeded to prescribe me some massages. LOL

@LifewithStripes

2 жыл бұрын

It is such a problem for me! People don't think about anything being tight because EDS causes loose joints, but muscles do get SO TIGHT from trying to hold everything in! Then you have to release them and stretch them out which seems so counter productive, haha

@justahappylittlebunny2656

2 жыл бұрын

My thigh muscles are solid constantly. like I've run a marathon when I can barely walk to the bathroom !

@kysscum111

2 жыл бұрын

I have an anterior pelvic tilt

@chloewangensteen7660

2 жыл бұрын

Well and even more so when I exercise it gets worse. Like the more stress I put on my joints the tighter my muscles become, and unlike most normal people they stay that way a lot longer. Everyone just goes “it’s fine” or “you just need to stretch” but that doesn’t work the same for me.

The bruise one shook me because all through my childhood I had bruises that I didn't know where they had come from but were always just assumed I'd forgotten as I was a clumsy child and bruised easily. So much validation that I wasn't just a forgetful clutzy child but there was something more to it

@annawilson3519

Жыл бұрын

⁰

I still think the shoulders should be tested! Maybe the test where you reach up your back with one arm/hand and connect it with the other (if that makes sense?). When I was tested for eds, my doctor used the Beighton score but also looked at other joints.

@arieldacruz2044

Жыл бұрын

Yes!!!

@cic5347

Жыл бұрын

I agree with you. I don’t know if I eds or not since I never knew about it until recently by chance, but I’ve always been super flexible. I can do what you just mentioned as well as the praying hands behind my back and I can also touch my elbows together behind my back.

Yes to the instability! It’s more damaging and a bigger source of pain.

I've always been able to do all of these things, I have undiagnosed chronic body pain, gi issues, chronic fatigue, and a rheumatologist didn't even bother to ask me any of these questions. More doctors need to be aware of this disorder..

@MJ-gj6mj

8 ай бұрын

The rheumatologist didn't even examine me! No joke...sent me out for blood work RA & lupus....never looked at my chart, the 6+ pages of symptom info I had to fill out ahead of time...the cartlidge & ligament damage from MRI! So many other symptoms too and ortho didn't check either. Meanwhile, I have another injury! I think the only way to change this is for us, the patients, to get on social media and start making people aware so they can pursue treatment and ask their Drs. Strength is in numbers.

@joeynarciso94

6 ай бұрын

​@@MJ-gj6mjalso, what does that mean, "cartilage and ligament damage from MRI." Was that a typo there?? Thanks

@joeynarciso94

6 ай бұрын

​@@MJ-gj6mj Oh sorry - addendum. Yes, that pain doctor was NO COMPRENDE x FOUR MONTHS!!! Did NOT know what those word parts meant whatsoever. As I recall getting my BS degree in the 80's, this instructor just kind of slapped a stapled up packet on the table for medical terminology and said, "LEARN IT!" We learned it all right ....

my hamstrings have been tight all my life (including now) and I can touch the floor with my hands flat on the ground -- when you both mentioned that it relies a lot on hamstring flexibility, that was sort of a wake-up call for me; I'm hypermobile enough to be able to touch the floor *despite* having super tight hamstrings. no wonder my back hates me so much lmao. thank you both

@silentfriend369

7 ай бұрын

Same here

@joeynarciso94

6 ай бұрын

Wait! What?? Hamstring flexibility?? Can you define your terms there? I will go Google that but basically what I was saying about consulting a therapist. Well, I'm a therapist from way back and don't know this but I'm overthinking it as in more flexible in the tendons, more lax ligaments. Like flexible where in the hamstrings exactly. I guess that would be what is being referred to but curious minds would really like to know!

@junipre985

2 ай бұрын

@@joeynarciso94 when people talk about hamstring flexibility they are referring to the muscles

They should clarify that all these tests are for young people. My kneecaps used to move around like crazy but now they have virtually no cartilage left and don't move at all. I don't know about most other things when I was young except touching the floor and going way beyond hands flat on the floor was easy up until fairly recently, and my finger joints still lock out. (I couldn't play the flute when I was young because my fingers bent backwards and then would lock out so I couldn't bend them forwards. I had problems holding pencils too.) There needs to be a different test for people approaching 60 and beyond. Forget shoulders. I've had frozen shoulder 3 times, encompassing both shoulders.

@andreawisner7358

Жыл бұрын

I can still touch my heel to my butt.

@MJ-gj6mj

8 ай бұрын

60... I'm thinking atleast an over 30 criteria honestly! My cartilage is about gone as well and it's been worsening for years. Nobody ever checked me for hypermobility and joint instabilty. Had no idea I was hurting my body, just believed I was flexible.

@zee-wf6wo

2 ай бұрын

for older people the tests instead ask if you can remember being able to in the past

I find my ability to pass any of these is so highly variable based on what week of the month and if I've had ibuprofen yet today or if I've had a recent URI

@SobrietyandSolace

2 жыл бұрын

Yeah my whole life I never considered myself ‘double jointed’ or even vaguely flexible (I know that’s different or hypermobility) but once I looked the criteria properly I was shocked I could do most after a few tries and then some days it would be a struggle but others it would jus t happen. I definitely am more loose some days than others.

@lamelaxity

2 жыл бұрын

I'm 90% sure (as someone who isn't a doctor lol) that it is all easier during the 2 weeks before my period. And everything hurts a lot more at that time lol

The thing about the Hospital Del Mar criteria is that it is *good* that there are easy and hard items. Sure, most people (in childhood, at least) can do the foot-to-butt (9. Knee hyperflexion) and elbow-by-side (4. External shoulder rotation) tricks, so you shouldn't consider someone as hypermobile because they can do them, but they serve the purpose of making the people who *can't* do them get a lower score. If something is easy, it means that *all* hypermobile people (and sure, some or many normies) will score that point. It's like IQ tests. They don't just have quite hard questions that only smart people will get right. There are some really basic questions, some ridiculously hard ones, and everything in between. You don't want anyone scoring zero or 100%; you want a representative spread. It's also just good to include lots of joints to get a clear general picture. I actually have some trouble doing the external shoulder rotation. I suspect that it might be something that nearly all kids can do, but continuing to be able to do it as an adult is indicative of hypermobility (I am 43, with injuries & extremely tight muscles). By contrast, the calf lunge (7. Ankle and feet hypermobility) is supposed to be one of the hardest to do, but I can get near 60° of dorsiflexion, which my podiatrist had never seen before even though she mainly works with dancers. Anyway, overall, I think that if a cut-off of 4 points results in too many people passing, the answer is simply to raise the bar to 6 or 7, not to start removing items. If anything, more items should be added, and partial marks too. My elbows hyperextend about 5°; you have one that does 5° and one that does 10°. These minor extensions should count! -- just not as much as the greater ones. The only one that should definitely go is the palms-to-floor one. It depends way too much on how fat you are, back pain and the state of your muscles. So many EDSers are unable to bend forwards like that that some researchers have even suggested that being able to do so is indicative of *not* being hypermobile but instead of being in good shape! In my life, depending on my pain levels, I've either been able to get my palms to the floor easily, or not even get past my knees. It's a bad test.

Me with the heel to butt thing: "What the heck, can't everyone do that?!" The discussion abt instability is really important and interesting, especially how different our instability can be. My hands, neck, and his are unstable and sublux all the time, but unlike you two, my patellas don't move at all. Izzy, the painful for 1 second thing? My ankle! Idk why, no pain when it goes out but when it goes in it hurts so bad for just a second. Hate it so much, lol. This was so fun, love the collab!! Never heard of the DelMar criteria, thanks for the info, ladies!!

I've sprained my ankles so many times I'm amazed I can still walk... At 47 yrs old I can't do many of these without injuring myself. But I used to be able to do All of them in my 20s.

@MJ-gj6mj

8 ай бұрын

Ok...this is me. Do you have an actual diagnosis? Or no, since you can't actually do these tests without injury? I'm just curious because I've constantly sprained my ankle and now, my kneecap dislocated but then popped in place with some ligament damage left as the result. None of these Drs. even test me for hypermobility issues!

Izzy. I nearly cried out when you talked about your elbows subluxating! It’s so hard to explain the overwhelmingly intensity of the pain that only lasts for moments, but occurs at the absolute worst times. I would never wish it on anyone, but thank you for allowing me to feel a bit less lonely in this world.

@MJ-gj6mj

8 ай бұрын

I think this happened to my knee as well. I def understood the pain for sure.

That hospital Del Mar one- I got all of them too, and I too was like, can people really not do this or that?!! I used to rotate my patella so much as a teen that now they’re very tight. Great video ladies!

Love this video, it's helped understand what the rheumatologist was remembering when he "tested" mine. I say "" because he only did my ankles & my ankles are the stiffest joints I have lol but still sublux as they are hypermobile in a different way, if I sit like a 🥨 I can turn my ankles so my feet are sole up, facing me lol. He tried to stop it there with hypermobility as his diagnosis... but I made sure I showed him my shoulder dislocations, my joint hypermobility in my wrists and fingers but forgot my elbows. Lol. I showed him my knee instability & my spontaneous hip dislocations, my shoulder instability & my skin & he said it's hypermobility spectrum disorders & never seen EDS in person. He said physio will sort it until I showed him the instability. He then jumped out of his seat in shock at the sight of my joints & tried sending me to the EDS clinic but NHS only accept rarer types. I went to see a private physio specialist after, who knew & understood the 2017 criteria & diagnosed hEDS with the recommendation of gene testing due to my family history. I'm shocked at how many drs don't know the updated criteria.

@kikim282

2 жыл бұрын

Hi, did you bring it up ED to the doctor during the appointment or did you wait until he said something? I am actually planning to see a doctor but I don't know were to start, I am afraid that if I bring it up to the wrong doctor he won't even know what is it 😥

@MJ-gj6mj

8 ай бұрын

How can we make them more aware?? Nobody seems to know anything relevant these days to get a proper diagnosis!

I’m someone with high instability but relatively low hypermobility. It makes me question my diagnosis all the time as I dislocate & sublux almost everywhere, but barely any of my joints are hypermobile

@IzzyKDNA

2 жыл бұрын

It's weird how we're all so different! I definitely would say I'm like 50-50...I guess as hypermobile as I am unstable hahha but some people are one or the other

@anyalazor7978

2 жыл бұрын

@@IzzyKDNA do you know if a person can still be diagnosed with EDS without being hypermobile (or hypermobile enough)? Thank you!

@Correctrix

2 жыл бұрын

@@anyalazor7978 You can be diagnosed with anything if your doctor feels like it, but if they're properly following the 2017 hEDS diagnostic criteria, the absolute lowest passing Beighton score possible is 3/9 (lowered from the default 5/9 by one point for fulfilling the 5-item questionnaire, and one point for reaching the age of 50). That's hEDS. For any of the 12 rare types, there is a sole criterion: possessing the known genetic marker. OK, for vEDS a skin biopsy also works. There's also the fact that they will refuse to do testing in the first place unless they see some signs of EDS like hypermobility or skin involvement.

@vanessabrannan4059

2 жыл бұрын

I'm like that too!!

@Summahtyme

2 жыл бұрын

I have Heds and I dislocate hardly ever BUT my joints are like jello. I question why I don’t dislocate, I definitely sublux but nothing pops extremely far out of place.

Izzy I want to just say you made me feel so super normal to have tried to explain that my knee is gross to my Dr as a small child. Thank you I know someone out there gets it. I thought and still do think jellos pretty gross in texture. All I could tell him is it's like jello. You saying it's the grossest feeling you get I'm sitting here screaming yes yes exactly that. Recently asked my Dr now that I have more words if it's hyper mobility or eds were gonna do some hopefully genetic testing to see how scary my type is. I brought the new criteria with me thanks to you :) and even bruised myself while showing her how wrong my skin is and how wrong I move. Just like you guys meant in this dark purple for no reason basically. Gives me a relief to know my nausea and gut and period and head migraine problems are explained more completely when I mentioned that I'm flexible to the point of dislocations. First time in 35 years I wasn't gaslit while visiting a Dr.

Oh, finally a hypermobility test that I pass!! I don't pass the beighton, but I was diagnosed based on severe dislocations and being far more flexible before having many injuries that have stiffened my joints and made my muscles horrifically tight in compensation. My joints are all horribly unstable. My fingers have never been hypermobile in the ways they test, but they're very flexible side to side and I can stack each finger on top of the other in little loops. Beighton doesn't test shoulders, which are by far my worst joint. And not only can I kick myself in the butt, but I can put my foot in my armpit! I can do so many of the "stupid human tricks", like linking my fingers, then popping one elbow through the other, and putting the resulting loop over my head. I can do reverse prayer and touch my entire back. I've always thought it was weird when when ask for help zipping up a dress. I grew up dislocating my knees almost daily for about 5 years after severely, traumatically dislocating them both the same summer. Until I grew a few more inches and "grew into" my stretched out ligaments, they just kept falling apart-- usually just while walking. Luckily, my dad was a remedial massage therapist and taught my how to fix them. I think the most painful dislocation for me is my hips. It has happened less than a handful of times. Once in college, and twice in my first pregnancy, once in my second (relaxin is EVIL for zebras!!) My ankles are the most "wrong" dislocation, because I can't even weight bear, where everything else is painful, but at least I can still kind of function (well, ok, not the hip). Or I could say my wrists. But I started dislocating them when I was 7 (my dad also had to show me how to fix them!!), So I've gotten used to it, though I do get sick to my stomach sometimes if I can't get them back into place. Sometimes it's a few days. And only 2% of people can move their patella around like that? Seriously? Mine feels like it just floats freely under the skin!! And I had no idea how flexible my toes were until I tried this!! I have some of the least common things on the list, but not the more common.

I'm in Australia and have been dismissed by multiple specialists as I have "low hypermobility". I have a lot of muscle stiffening to compensate for my lax joints, and am hypermobile in most other joints, I just miss some of those included in the Beighton. I've found plenty of studies that recommend counting other joints in this situation, such as the hips and shoulders. I meet all the other criteria, but the docs here are pretty reluctant to diagnose hEDS. It took me 5 rheumatologists to just get an HSD diagnosis. I can't wait for them to update the diagnostic process and remove the Beighton!

@MJ-gj6mj

8 ай бұрын

5 rheumatologists! Did you have to get a referral each time to see them? It took me over a year to get a referral to see one and he turned out to be horrible. Never did ANY physical assessment, just blood work.

Some of us also cannot do hands on the floor in Beighton because our ribs slip out of place in that position and it is excruciatingly painful.

@StephanieDefinitely

Жыл бұрын

Yes! 💯

I have been reading that hyper mobility has links, among others, to the fight or flight hormone adrenaline and also drug and epinephrine sensitivity.

I also really appreciate the first one showing the ankle instead of the forward bend. The forward bend is SO bias by muscle tightness it can miss people who even have really hypermobile hips

Thank you so much for mentioning kicking your butt when running in school. I am 57 years old and finally being tested after daughter was positive to Shriners Hosp. I can remember class mates laughing and talking about it when I ran in competing.

Growing up I thought being able to move your patella was normal and that everyone could do it so it’s really crazy to hear that only 2% of people in the study could

I was diagnosed with hEDS the same day I was diagnosed with Dysautonomia. I BARELY passed the Beighton score test thingy but a lot of my past injuries validated my EDS per my doctor. I was ALWAYS getting hurt when I was younger without knowing why and I gained a "reputation" from it from all my classmates, teachers and coaches. I was sent to a rheumatologist who only tested my hands for hypermobility and didn't go any further. Needless to say, he did not diagnose me. It was only when my POTS came about years later that I had a doctor who listened and tested me to find out why I had POTS, that's when I was diagnosed with hEDS. I have never been double jointed (except in one finger but that doesn't count lol), but I am hypermobile in my hips, both knees, one thumb and one pinky finger. Some of the joints hurt a bit doing the test because, growing up athletic, having to stop all sports and working out has made my muscles very tight (plus mild scoliosis for the hips part). Also with me being on the chubbier side, my fabulous fatty areas can get in the way of some of the hypermobility tests. Kinda funny. When I was fitted for my wheelchair, they had to test the range of motion for my shoulders and the PT assistant was shook by how far back I can rotate my arms/shoulders. There is so much that can cause you to fail the Beighton test because everyone is different. Muscles are tight in some and not others. It's crazy how much our bodies can range in motion while still being hypermobile and/or having EDS of any type.

@mxngos7493

Жыл бұрын

Yeah! Like for me some days my pinky can go back over 90 degrees on both sides and other days it just is like "let's actually do 85."

@MJ-gj6mj

8 ай бұрын

Yes, the Beighton test is NOT a one size fits all. There has to be more testing done and the Dr. must be willing to do this!! The rheum I saw didn't even do a physical exam, dismissed any notion of hypermobility ( despite numerous signs) and sent me out for blood work (RA & lupus). Even MS was not considered which could cause joint instability too. It saddens me to think how many others are out there suffering each day and unsure what is wrong with their bodies!

This is pretty cool you can see how two different people can have same disease but score differently .

Thank you for this video, it's really helpful! I am 27 and only recent found out I have hypermobile joints after I went to see an osteopath. For the past 10 years my muscles have been super tight, especially in my legs and back so I'm really inflexible and never thought I was hypermobile. When the osteopath told me I was like ??? but it made sense when she explained that my mucles are protecting the joints. My spine, shoulders, knees, ankles, feet and neck are super wibbly wobbly but I always assumed everyone was like that haha. I've been diagnosed with CFS, POTS and fibromyalgia but am now looking into getting assessed for EDS. First step is gonna include hypermobility using the beighton score. I've been really nervous about it because there's no way I'm gonna try and put my hands on the floor cuz my POTS is so bad atm and I don't think I could do it anyway because of muscle tightness. Also my inflammation and pain levels atm are so high I just don't want to be messing with my joints. I spoke to my osteo about it and she said that they should be able to assess me while I'm lying down.

Thanks for doing this! The different scales are so interesting to learn about. That foot to rear thing at 17:10 is how I quickly showed my doctor I'm hypermobile (though I think I went beyond/to the side). Even though your research showed 97% of kids can do it, maybe it's something a lot of them grow out of. I recall being very confused in 9th grade gym (I believe it was) that during our gymnastics unit, the athletic students were unable to do that warm-up stretch, and I (who was allowed to do the warm-ups, but put on the sidelines to practice somersaults by the teacher since I was hopeless at gymnastics) didn't feel a stretch from it. I figured I must be doing something wrong! 😳It would be interesting to know what percentage of adults can do it. Thanks for another interesting video!

@MJ-gj6mj

8 ай бұрын

I used to think I was lucky to be so flexible. Sadly, I can barely walk now and this is well before what society woudl consider the "expected" age to use assistive devices. My cartilage is about gone....tons of injuries over the years. And I've never had a Dr. even try to test me for hypermoblilty. Now, with all my issues I don't know what I could still do lol! But a few years ago, could do pretty much all them.

@MillsSkits

8 ай бұрын

@@MJ-gj6mj It never hurts to let a doctor know you feel you may be hypermobile! To be diagnosed, adults don't have to be as hypermobile as kids.

Me passing all the tests and figuring out that the placental abruption I had when giving birth was most likely related to EDs, and still gaslighting myself 🙃. Im also an MA for a clinic that works specifically on joints and im like “nah. Im not gonna bother the doctor with all that”

I just hope you both have good docs. Wisconsin docs treat Ehlers-Danlos with yelling, gaslighting, and antidepressants🙄😡

@alfonschoubek2984

2 жыл бұрын

Country docs treat people like animals.

This was pretty fascinating to watch! It feels rather validating that even between you two there’s such differences. When I first brought up EDS concerns to my neurologist she mentioned Beighton but I was like yeah see I’ve read about it but I have to modify it bc I’m only hypermobile passively bc I have spastic Cerebral Palsy in 3 limbs. So I can’t do much standing but I can pull myself all over the place lol. I actually ignored the possibility of hypermobile joints for years bc it seemed to clash too much with spastic muscles but they are technically different things! Sadly it took me absolutely ruining my right thumb (doesn’t have cp) to realize. I often wonder if my spastic muscles keep me from dislocating bc I never have dislocated it’s everything just hurts. I don’t even know if I have EDS , maybe MCTD? I feel like I’ll never find out tho bc I had no idea EDS was the boogeyman and made doctors slam the door in your face. The internet and photos of thumbs have changed my life but did not warn me of that part! Im tempted to change my identity to someone who never had suspected EDS in her file just so I can get into the genetic specialist 😭😭 like I’m trying to see what ELSE it could be too yall but you refuse to test meeeeee so how will I ever know it sucks. At this point I may just convince my mom to go bc she doesn’t have that suspected in her file (her rheumatologist is also someone who refuses to see me 🙄) and then use that to fight for non-EDS secret me next lol

@MJ-gj6mj

8 ай бұрын

"Everything just hurts." I can relate to that 100% The rheumatologist that I saw just ordered blood work, no actual physical exam which didn't make any sense to me! I hope things have improved for you, or at least you received some answers.

Thank you so much!! I have always been able to put hands on floor but last couple of years it has started to hurt My mom was able to do this into her 60’s as well as “shoulder trick.” She can no longer walk without a walker (74.) Same thing happened when my grandmother was 68. I can still do the elbow and both my knees “passed” before osteoarthritis showed up. I’ve had one total knee replacement which was a Miracle for me (twisted bone and compression fractures..) I’d like to hear more about the EDS related osteoarthritis. or what some docs called “early onset osteoarthritis” (measurable osteo in Several joints in 30’s-40’s). It started in my 30‘s with several areas of the spine, then knees, elbows (had ulnar nerve repositioning surgery 15 y ago) now both wrists and numerous joints in fingers on both hands and toes, foot bones. The reason why osteo is important to note is because a lot of these measures can become difficult or impossible to do depending on the extent of the osteoarthritis and doing them is most likely part of the cause. Knee to butt👍- 👍before knee osteo.As a child, brought me to numerous specialists for bruising, including Yale. What did they all say? “Give her more vitamin C” 🙄Also, heart valve insufficiency/regurgitation.. I only hear about MVP. All my valves are insufficient, the worst being the aortic valve (moderate-severe). Instability of inner ear bone (often resulting in ménière’s).another HM criteria: scoliosis. Weird family thing😜: mom has HM and instability, dad has very fragile skin. He has not ever been without at least 1-2 bandaids and has a cabinet full of various bandages for as long as I can remember. I’ve been diagnosed with HM/classical. . Finally, I have never gone to an EDS conference because, from what I understand, there is a lot of “competition” regarding subluxation and dislocation as well as visible aspects of EDS symptoms, feeding tubes, NG-tubes, IV ports etc. Many people (esp with classical and classical/HM) subluxate mostly small joints. Not all people with EDS have obvious symptoms and visible treatments. Many people also have subluxation that self-resolve (and may not even realize it!) . I have swallowing and motility issues that are treated with diet. Not (yet🙏) tubes. We should be there for each other..not to compete with each other!!

I was wondering about the hands on floor test as well. I used to be able to do it easily, even to almost lay my forearm on the floor. Now at 37, my hamstrings are often very tight, and I can't do it anymore.

@merlinsgirl9311

11 ай бұрын

I can put my hands on the floor but my family insists it’s because I have a weirdly long torso and proportionally long arms. They’re not wrong, I do have a long torso, I’m 5’1.5 and 19” from nape of the neck to waist. I measured recently when I was getting frustrated with my mannequin because the chest and shoulders were the right height but the hips were too high.

@MJ-gj6mj

8 ай бұрын

Wondered the same.., certainly something to be mindful of and hope a Dr. would take notice.

I'm diagnosed HSD, suspected hEDS. My rheumatologist actually used a few of the things from the other tests not just the Beighton test. He did the ankle, I can't remember if he did my toes. He did the heel to butt... And I have to chuckle as I could always do it, however let's put it this way, my thighs are so thicccc nowadays that it prevents my heel from going to the butt 😅😅 but I can grab my foot and squish it to my butt quite easily. Lol!!

This video was so well done, well done both of you 💗

@IzzyKDNA

2 жыл бұрын

Thanks Georgina!!

Heck yeah! I am currently (carefully) warming my stiff body up for my first PT and sooo happy for this content.

@LifewithStripes

2 жыл бұрын

Hope your PT went well!!!

4 outta 5 on the Beighton Score. I used to be able to do the elbow thing...like, 30 years ago 🤣 my geneticist got a chuckle outta that one. The Hospital Del Mar is great if you're younger. As an EDSer ages you become stiffer. I am an echimosis sufferer from a young age.

This was great to watch, thank you! Love it when you both collab

I was diagnosed with EDS this week, and I sat there going "Wait, that's not normal?" at most of the criteria. Everything makes so much sense now.

I’m doing these tests along with you out of curiosity 😂😂 Also, that’s a super interesting point that Mickey made about your knees not hyperextending but still having so much instability 😅

@iammellbell

2 жыл бұрын

I did some too! I thought it was interesting what Mickey said about knees too!!!

@Correctrix

2 жыл бұрын

Yep! My shoulders don't do anything too crazy to look at, but the right one hangs significantly lower and further forward than the left, leading to Thoracic Outlet Syndrome that has caused total paralysis of that arm. I've been recovering from that for a year now, and I'm only just able to sign my name again. Also, my knees don't significantly hyperextend, but the patella is loose enough to sublux and make me give up running, and the fibula fully dislocates from the back of my knee if I twist it by standing up funny, causing utter agony until I can slam it back in. I've been able to avoid that for many years now, by standing up very carefully and never W-sitting.

@ps-cx9hz

2 жыл бұрын

Would you mind elaborating on the process when you knee does that. A few years ago, when I walked or sat down and kinda moved my knee funnily suddenly pain shot into it and it hurt really bad and it couldn't be moved. I then carefully stretched it out and there was a loud knacking sound and then it got better. My doctor at that time said it was only pain from growing since there wasn't anything to be seen in X-Rays an such. I would appreciate it if you answered! XXX

@Correctrix

2 жыл бұрын

@@ps-cx9hz Basically, the pain I feel at the front is minor (it just makes me limp, or hop if it's worse) and knee braces help it, so I've concluded it's the kneecap moving around and the ligaments getting injured. The pain at the back is mind-bendingly intense. It's am agony switch flicking on. I've concluded that it's the fibula because that's the only thing that can dislocate behind the knee. I've actually never seen it happen or been able to calmly examine it with my fingers because every single time it's happened, I've instantly collapsed to the ground, completely blinded with tears of pain, and been able to do nothing but compress my knee as hard as I dare with my hands, while whimpering. I don't even know how long it lasts. It feels like a second or an hour. The pain blocks out all awareness. Then it suddenly stops, and I'm left sore and limping a bit for the day, but it's 1% of the original pain. So, what triggers it? If I just extend my knee straightforwardly like a hinge, it's totally fine. But if there is any twist or sideways bend to it, this may happen. Standing up from a W-sitting position involves extending the knee badly like that. Since I always sat like that while playing in my room by myself, it kept happening. I was very ashamed of it because I had no frame of reference for it, or concept of a dislocation, so it just seemed to me that I'd somehow hurt myself. Just like tripping and hurting yourself, it seemed to me to be an embarrassing clumsy blunder. It probably happened a couple of dozen times, and I kept being more and more careful about how I stood up, until I managed to stop it happening entirely by my early 20s, I'd say. I always managed not to do it at school (where we were mainly on chairs anyway) and I was a neglected child so I was alone in my room with no human contact for the vast majority of my time out of school, so no one else witnessed it even once. My only experience of doctors was of being hurt by them, so it never once occurred to me to ever ask to see one for this or anything else, although I was chronically ill. I'm now 43 and, still, if I extend my knee funny, I can feel the back of my knee starting to come out. It's sickening and panic-inducing. I can remember all the times it happened as a kid. I freeze and carefully straighten it. I've thought about twisting it out it deliberately in front of a doctor or to video it, but I'm too chicken. The pain is horrific. But physically I could do it right now.

@MJ-gj6mj

8 ай бұрын

@@Correctrix That story about your knee is exactly what happened to me , down to sitting in the W position. All I was told at the Drs. was about being too young for my knee to just give out. I didn't know how else to describe it and it hadn't happened before so I was scared. Only my ankle, toes and shoulder have done stuff like that.

Also, can we talk about the inflammation issues! Working out & improving muscle tone has helped with inflammation and pain, but when the inflammation goes away, then things move more, ack! I can't keep my lower arm bones in place for nothing some days.

@chloewangensteen7660

2 жыл бұрын

I feel you girl. I have a similar issue. I don’t have Eds as bad off as a lot of people, but I still do have it and when I exercise I experience similar issues to what you are describing. I hope you are doing well :)

@shae113

2 жыл бұрын

@@chloewangensteen7660 Same! I’m on the slightly less severe end (mostly in the severe co-morbidities end). It’s a bit embarrassing to be hiking with a friend, go for the water bottle in my backpack & end up popping my radius out of place. And the fatigue is real! The days my limbs feel like dead weight sucks, especially when it’s a gym day. Good luck on your end!

@MJ-gj6mj

8 ай бұрын

Omg...this explains a lot actually. "when the inflammation goes away, then things move more" I still don't have an official diagnosis but I have about every sign of these hypermobility conditions. They don't seem to care, but I'd like to know and help myself.

@shae113

8 ай бұрын

@@MJ-gj6mj It took me 24 years before I received a diagnosis. Starting with a rheumatologist helped to eliminate other possibilities. Then I spent a year tracking daily pain levels on a scale I defined for myself. I included notes about dislocations, fatigue & injuries. So, at the end I had evidence to back up my talking points at the doc. Oh, and interview new docs before committing to using them, make sure they’re open to hearing you. I started asking around & found several resources to give my PCP. I even sent her a video by @IzzyKDNA that shows several people with hEDS going through the criteria sheet & demonstrating what things looked like on them.

G-HSD/hEDS here (doctors can’t agree, lol): I’m very hypermobile with lots of joint instability and random, painful muscles spasms (and therefore all kinds of nerve problems). I haven’t dislocated yet (thankfully), but I sublux all the time. But I also figured out many years ago that keeping my muscles strong helps in the long run. I was recently re-evaluated by a physical therapist, and he was surprised at how strong I am, but yet I still get injured out of nowhere. (I was there because I tore stuff in my hip by basically existing. LoL) He said that I would probably be injured a lot more if I hadn’t kept myself in such good shape. Unfortunately, since I have so much pain all the time, I don’t know which pains are “okay” and which are “oops something broke” until…well, something broke. 😂 So it’s a constant struggle. And as I get older (I’m 40 now), I’m falling apart faster. My shoulders are some of my worst joints (and my spine is a mess; don’t get me started!), and yet shoulders don’t seem to be evaluated often when screening for EDS. I’m hoping as people learn more about EDS, the criteria for diagnosis will evolve and get better. Even my eyes are affected (unstable muscles so they don’t focus properly) which causes me a lot of problems, yet eyes are usually not even discussed. (It was my eye doctor who first suspected I had EDS!) Such a complex disorder. It’s amazing how it affects us all so differently!

The toe one made me worry that you guys were going to accidentally dislocate something 😅😅😅

Izzy I’d definitely say that bruise of yours passes, when I get that type of bruising it actually looks slightly different on me due to my skin colour which is interesting

The hormones thing is really interesting and was something I figured out over time and didn't notice for a while until I did research on it. My pain and instability get infinitely worse right before my period when my progesterone is high, and I had trialed a progesterone BC before and oh sweet Jesus was that not possible lol. It made me already bad pain and instability worse. I looked into it a lot and progesterone do in fact make ligaments more loose losing that supper even more. Birth control trialing! What a miserable experience that was. :) Have you or anyone else notice that your bruising increases by a LOT the week before your period? I have noticed this connection over and over... As for the testing, the variations and different issues that can and cannot occur between everyone is SO interesting! I was diagnosed with HSD with only a 4 on the scale for my elbows and knees and almost being able to touch the ground. Like you guys my hamstrings are so tight and I just have bad pelvic floor dysfunction and SI joint instability that I'm pretty sure is also the cause of my upper back and neck pain as well since they have no support the lower back. I feel this is probably pretty similar to most eds folk. I don't dislocate at all, just sublux. Instability is absolutely my WORST symptom to the point I couldn't sit up at a chair or even a couch or at school, which I had to quit because it was so painful, regardless of being in PT for so long before that too. I feel like they don't think about the SI joints or other hip hypermobility. For example, my hips go all the way down doing butterfly pose, like no resistance whatsoever or need to push. They just flop right down like a wet noodle lol. This was actually one of the first things that was noticed by someone else because I didn't realize how abnormal it was. Crazy how these things can manifest.

@laureng3830

2 жыл бұрын

yes the inflammation caused by the hormone changes caused a while cascade of issues. Joint pain skyrockets during this time for me

@alenamaecrossing2319

2 жыл бұрын

Had the same experience with the pro estrogen only birth control! The trouble is I can’t get combined pill prescribed because I get migraines 😭

I get a 5 on Beighton because I don't currently have the hand hypermobility because of OA and RA (could do the hand grab behind the back to full fist). I don't know if I had it in hands younger because I never tried all the "fun" tricks. I didn't know hypermobility was a "thing" until I was told at my first hip replacement at 50. Now at 69 its coming on full force. 8 joint replacement, lumbar fusion, (cervical fusion coming )metal in big toe, bilateral carpa tunnel and need a revision on one and both hamstring tendon fully detached from bone. Just had surgery to repair one and now 4 weeks on I think it has torn again. It's not what you think of as a sports injury, explosive. It just gradually tore the first time and I'm afraid it's doing that again. I was self diagnosed last year, had never heard of it before. My rheumatologist doesn't think my skin is flexible enough to meet criteria but agrees I have all the other symptoms you mention in your videos. Don't remember tight hamstrings but definitely tight calf muscles. Problem is now what do I do, it seems like my retirement is just going to be one surgery after another and repeat with revisions. That comment is actually what my rheumatologist said convince her that I do have EDSh. I made the comment that "it's just one thing after another" and she responded, "That's what EDS patients say"

The main issue that needs to be examined for all these tests is specificity vs sensitivity. I would love to see a study were people who are known to have hEDS (and a control group without and maybe even a hyper mobile group) are tested using each criteria and the results tabulated and compared. This could give insight into which tests are most likely to pick up on someone having hEDS.

9:24 that way that Micky does the dorsiflexion test when pulls her pinky and rotates her hand to maximize the furthest range of motion against the pinky as possible. She pulls it so hard backwards/downwards... it looks like she's rolling her pinky joint directly against the knuckle bone or something. I could even HEAR her pinky joint SNAP if you listen carefully. I see tendons or ligaments fully extended bulging out from her palms. She pulls her pinky hard for the dorsiflexion test wow, thank you for demonstrating this one. 😱😮 I've also noticed varying degree's of thumb to wrist. Sometimes I see people only touch the tip of their thumbnail to the wrist, but Micky brings the thumb fully flat against the wrist and completely closes the gap, like she can hold a paper clip between her thumb and wrist where other people have a gap between the middle of their thumb and wrist. Also, is it possible to pull the thumb further past the wrist so that the thumb reaches the top of your wrist/forearm? Is it possible to bring the thumb beyond the wrist?

It was so nice to see a video, Thank You. In 2021 I was diagnosed with GP Gastroparesis.

I really enjoyed these collabs, they were so fun and love hearing from you both!

@LifewithStripes

2 жыл бұрын

Should we do more!?! If so, what do you want to see?

@iammellbell

2 жыл бұрын

@@LifewithStripes would totally love to see more

There are some of these I could do in my youth that now over 50 I cannot.

@northernfox6420

4 ай бұрын

I am in your boat. I was only diagnosed with Generalized Hypermobile Spectrum Disorder because my arthritis is counter-acting most of these now. One time, bowling with friends, someone tapped me on the back of my head. I whipped around to see who was playing a joke on me, turns out, it was the bottom of my foot touching my head when I threw... WTH???

First time I hear touching my butt with my feet is something "rare" 😆. I used to take naps laying flat with both my feet under my butt. (and still can in my late 40's) I have always been far more flexible backwards than forward. I cannot currently touch the floor with my hands, (I could until my mid 20's) because my knees lock and are too destroyed and inflamed to even dare, and my hamstring gets a painful, and visible knot, one of my hips is unstable and have terrible lower back pain. But I still can completely bend my knees and lay all my body flat facing up, and putting all my weight on my feet. Now THAT should be in the criteria. Also, if you suffer from bad POTS, touching the floor with both hands is as unpleasant as doing downward dog.

I can literally walk on the sides of my ankles and that was not part of the test and should. I got horrible shin splints playing basketball in high school because of this and had to start wrapping both ankles.

@colleenmcbride3656

2 жыл бұрын

I weigh 400 lbs and can run on my ankles with the bottom of my feet facing each other without pain.

And the bruising... the other day I got a bruise under my chin. I had been staying at home (I've become quite agoraphobic lately), simply studying at my desk. My husband asked me, "what happened to your chin! did you fall? We were puzzled. It wasn't until later that I realized I had been resting my chin on my hand for a couple of hours straight, what had caused the bruising. Which brings me to another point regarding differential diagnostic criteria. I bruise quite easily and as a child, I had serious, daily nose bleeding. Yet, it all indicates I have hEDS, and not vEDS, despite the fact I did not do the genetic test when I was diagnosed, over 10 years ago.

I recently got my hEDS diagnosis, but as a male it's really hard to know where I fit in. I've heard many times that I have very soft skin *for being male*, but when you compare my skin to that of women, it's still maybe on the softer side but not exactly remarkable. Pretty much everyone talking about their hEDS on social media is female, and there's very little info and representation of males with hEDS. As far as I understand it, the hEDS criteria are supposed to be interpreted relative to age and sex, but I feel like it's very hard to know how "severe" the symptoms are "supposed" to be in males. It seems like my hEDS affects my life so much less than every woman on social medias talking about their hEDS, and I just wish there were more males that I could compare myself to.

@annabelcrescibene4257

Жыл бұрын

Yevie Oddly is a drag queen who won s11 of ru paul’s drag race is a guy with Ed’s who talks about it alot

Saw an orthopedist for my shoulder and collarbone. Have been diagnosed with EDS by a geneticist, have the records and told them so. They confirmed it and STILL made me do the beighton test, knowing it hurt and was bad for me? And then were just like oh yeah guess you really do. As if my geneticist and I made it up?

@tanyakristeen

Жыл бұрын

Id have walked away if they were asking me to hurt myself I'd have been like what about no harm? This is where it goes from gaslighting to guinea pig to medical malpractice super fast

@emmacarroll3665

Жыл бұрын

@@tanyakristeen easy to say that though when you're not the one in the chair looking for help and they're the only ones who can. They're not the first to have done it and they won't be the last. I have to pick and choose my battles if I want to get any of the care I need

My hip has tended to pop in and out of joint since I was a teen. Which I’ve come to find out isn’t normal. I’ve also always had hypermobility. And hypersensitivity to sounds. Do you ever find that all of these things are related? Also, do you have really bad PMS (PMDD)? I have been reading that all of these things are related as well.

@pegaseg70

11 ай бұрын

HDS has a high occurence with autism/ADHD

@MJ-gj6mj

8 ай бұрын

I don't have an official diagnosis either....but yes, sensitive to sounds and also too bright of lights. I would say actually during the cycle is worst for pain and maybe a day ahead so yes. I have GI issues at times too and I usually resolve with a diet change. There's a ton of symptoms connected to these HM conditions.

@nunyabusiness164

5 ай бұрын

hyper mobility has links to autism and ADHD, which have links to PMDD. I'm hypermobile, I have ADHD, and I have PMDD.

My hamstrings and achilles tendons are pretty tight, and most of my joints are super painful when they subluxate and then when I put them back they are generally fine. My least favorite are the joints on the my foot, neck, and ribs.

Gosh that thumbnail! You two are so bendy & I’m not surprised at all 😂😂

This was really interesting as I am hyper-mobile but I think that I have Heds but I don’t know but enjoy watching your videos thanks x

Thank you. You guys are lots of fun and very informative. My prayers are with you. You are very brave.

thanks for this video, i've always wanted to know which other hypermobility tests were out there before the Beighton scale, but i never really found anything detailed ^^ I also have tight hamstrings, i used to dance and stretch quite often because of that, yet i've never been able to touch the ground with my hands with straight legs, no matter how much effort i put into it. I think it might be for the better though as i am hypermobile, maybe it's protecting my knees.

The most disgusting to dislocate for me aside from patella, the jaw, especially when it pops out and into place, when I am talking or eating and there are people around, who can hear it. The worse is when I cannot put it back in, for weeks.

@northernfox6420

4 ай бұрын

Woke up one morning and 'caught' my jaw. Another thing falling off!

I used to wake up with bruises on my thighs and feet and arms, I thought that was because I would stump my body on my bed post or table. On the Beighton score I got 7 out of 9 for hEDS

RE muscles being to tight because of hypermobility, I've found Facial Counterstrain therapy to help a lot with that and its related pain. It's helped me while traditional pressure point, massage, acupuncture, and dry needling have made me hurt or feel worse.

I recently tried to get diagnosed at 52. Unfortunately, I was in a flare at the time and my psoriatic arthritis was heightened as well as two sprained wrists. I did not 'measure up' on the beighton score. I wish they would have taken into consideration how ridiculously hypermobile I had been in my younger years. My mother had actually taken me in because I would always 'frog sit' (and could lay down, back flat, etc. Plus, they missed certain other indications (multiple teeth removed because of overcrowding, piezogenic papules (logged as negative, checked at home, definitely positive, etc...) So frustrating... Wish they would have just done a blood test too.

I remember standing up one time and my foot was asleep. My ankle bent 90 degrees sideways. I stared at it. I had no idea I could stand on the outer side of my ankle. I sat down and put my foot back where it belongs and rubbed it a bit. I had no pain afterwards. I was fine. I’ve had 2 knee surgeries on each leg for subluxations. My hips pop out easily. My hands and arms are arthritic so they don’t move like they used to. I have significant kyphoscoliosis so I can’t touch the floor with straight legs. I do get spontaneous bruising.

I'm really confused because I feel like I can do a lot of these but I also generally consider myself very inflexible

@IzzyKDNA

2 жыл бұрын

It miight sound weird but flexibility and hypermobility are actually not the same thing! Hypermobility refers to loose joints whereas flexibility means you have loose muscles (kind of). If you can do a lot of these things then you're probably one of the 10 - 30% of people who are hypermoibile

I have EDS and I’m not sure what type it is. My Neurologist didn’t share that with me. I am going to ask him when I go back to see him, he’s also the one who takes care of my Epilepsy. Mine might be the type that causes Osteoarthritis, because I have osteoarthritis in my back, and I have pain all over my body. I can do that with my pinky. I can bend the tip of my thumb, my friend from church was amazed by that. I might have been able to do a lot more when I was a little child, but I’m older now and I have had trauma to my body due to a automobile accident. I learned that I have Classical EDS type two. The Hospital Del Mar test kinda rings a bell, but I am not sure what type of test they did. But due to my age , I am 48 heading towards 50 I don’t think I was able to do certain things that well. But I got enough to pass.

Based on the beighton score I'm not confident that I'll pass, because my hands are not where I'm flexible. My shoulders, hips, and knees are, but like you guys said my hamstrings and quads are constantly in knots from compensating for my knees, so the palm on floor test is a 50/50 proposition at best.

This was so interesting to watch. I have been in pain for as long as I can remember and on Friday I finally got an HSD diagnosis with a score of 9 (I think it might be EDS because I do tick other criteria but don't have a POTs diagnosis, just the symptoms of it). I have had problems with my sacrioloc joint suddenly causing immense pain, a clunk and getting kind of stuck. I bet it is subluxing! It's like a light bulb moment although I am sure that kind of thing is obvious when you know you have it. But I was wondering, when yours subluxes how do you get it back in? Because I have to lie down without moving that joint and just rest it then it seems to go back but there is no clunk so could it actually be subluxing? My knee does the same thing and my neck also does something similar. When that happens it makes me feel completely sick with the pain but it has always been unexplained x

Regarding the toe flexion, you did toe extension and regarding passive hip abduction, it's done by another person (a medical professional) for it to be passive and I'm uncertain how they're measuring that because I was taught to measure it in a way that the typical end range of motion is a very different value than the 85 degrees noted in this criterion.

@IzzyKDNA

2 жыл бұрын

the hip abduction was so unclear! I feel like we probably did it wrong lol. interestingly, all the studies I saw that had images or drawings shoes the toe thing the way that we did it with it pointing back

@natalieedelstein

2 жыл бұрын

@@IzzyKDNA Oh wait but now I see that they called it dorsal flexion...I assume they were referring to the direction of ankle dorsiflexion, so they probably were just referring to toe extension and seeing from the drawings on the test at the end, that is what is shown and they do the same method of hip abduction I was taught and they just place their axes differently most likely resulting in a different range. It's done where the physician has you lie on your back and they make sure you don't externally rotate the leg (toes towards the ceiling) and keeping the leg level and they abduct the leg out off the side of the table (don't try this without someone qualified to assess it, as it can be dangerous).

@cinnamonagouti

2 жыл бұрын

@@IzzyKDNA You actually did a combination of hip flexion and abduction. I would say the passive abduction test is like in this video: kzread.info/dash/bejne/mWSMyZhxqdfHibQ.html , performing ONLY abduction while holding the pelvis in place. But then again the normal ROM should only be around 45° - and 85° sounds very excessive even for a hypermobile person when compared to the normal ROM. So I'm not sure about that.

Spine is definitely most painful for me as well. When I lay down at night after walking around all day I can feel all of my vertebrae moving and it hurts so much. My si joint dislocated while I was pregnant with my youngest and it hurt to even breathe. The ER told me it was normal to have back pain while pregnant and gave me muscle relaxers (that I didn't want and made me sick). 🤦🏼‍♀️

Interesting video i quickly subbed to her channel she seems like an interesting person and i would love to find out more about her love you izzy beautiful video

I would always kick myself in the butt when running

@northernfox6420

4 ай бұрын

Accidentally kicked myself in the back of the head while bowling... LMAO

Thank you so much for making the criteria videos!! I've learned about this condition thanks to your videos that I randomly stumbled upon, tried them myself and now I've had a proper diagnosis and 3 more people in my family have been diagnosed too!

My ankles are super hypermobile side to side and in flexion, but I have very limited dorsiflexion. In fact, I can't get my foot 90 degrees flat to the ground without pushing. It's called equinus contracture, because we walk on our tippy toes like horses lol. An ankle surgeon specializing in EDS said that many people with hypermobility get really tight calves because the gastrocnemius muscles are working overtime to support various joints, which if bad enough can cause equinus contracture. Because I can't get my feet flat to the ground I start to fall backwards, so then I turn my toes outwards which stresses my hypermobile knees and hips joints more. My PT for that is massaging the muscle and also literally putting my foot in the handle of a dog leash and pulling it to stretch that muscle out. haha

@nunyabusiness164

5 ай бұрын

omg I walk on my tippy toes! And same! I've sprained both ankles in the last few years, they're bendy side to side but my calves and quads are super super tight. Foot barely goes to 90°.

@Annie-A

5 ай бұрын

@@nunyabusiness164 I’ve been doing a lot of exercises and PT working on this issue actually. I now am in a normal range at neutral. I still can’t lift or bend it as much as I want, but it is so much better than before. Most importantly, it does not impact my walking anymore. It was very damaging to my knees, hips, and spine. So getting more dorsiflexion has been very good. I highly recommend 5-10 min of daily exercises to stretch/relax the calf muscle and Achilles tendon.

The Brighton test for bending over is very flawed, as a child I could do this but my back has become very stiff due to my scoliosis

I haven’t watched the whole thing but I know what eversion so thought I’d explain it. It’s an ankle movement with the toes moving inward/toward the midline/medically. In dance, it’s a sickle. :)

@JessandIzzGusington

2 жыл бұрын

I was still confused until you said in dance it's a sickle 😂 now I got it!

HEDS here. I did 9/9 on Beighton but need to stretch and relax my hamstrings to get to the floor standing. I can sit on floor or table with legs straight out and get the flexion and quite a bit more easily. Difference: I’m using my hamstrings to stabilize myself when standing and they DO NOT wanna let go.

I will be 70 next month, and I passed all these. My entire family tree seems to have been affected by hEDS and cEDS.

ugh thank you I really dislike the beighton test because I seem to be right on the edge of it despite being OBVIOUSLY extremely hypermobile in several ways and subluxing a lot. And the tipping point is the dumb bend down test. My spine is super messed up, when I was going through testing for hEDS I was recovering from spinal surgery for a herniated disc (at 22 years old with no trauma causing incident) and I even told the doctors I COULD touch my palms before surgery. Even while recovering I could get my fingers mostly flat. Didn't matter though, didn't pass so no diagnosis for me. That doctor was a bit off though. I wasn't aware I was subluxing (cause I didn't know what that was) and at the time didn't even realize I had chronic pain cause of how normal it was to me my whole life. So since I didn't have any dislocations and didn't pass that test somehow that meant it wasn't possible I had hEDS even though a) dislocations are a requirement and b) neither is the test tbh. Going on 25 and still looking for that diagnosis that I know I have. Bleh. I really do hope they change to this new test! Cause if so I pass with flying colors lol

My joints and spine are very unstable, arthritic and hurt, they sublax all the time but I'm not hypermobile enough to pass the Beighton score. So I'm really confused if I have EDS or not because I have so many EDS symptoms and co morbidities but I'm not hypermobile enough like?🤔 My back hurts so much that I can barely walk and I'm only 23. Thank you for this video, very interesting!

@alenamaecrossing2319

2 жыл бұрын

Hi! Do you think that your arthritis could be causing the joint instability/subluxations rather than EDS? I don’t know much info on this other than it can prevent similarly sometimes joint wise

I love your videos and thank you for all of your upbeat knowledge! Do you know if, say, I have hypermobile EDS, but my father has a different type of EDS, could he have passed the gene onto me still or do we both have to have the same subtype?

My original Breighten test was 7/9 in 2008. I used to be a runner, cross country & track, plus I’ve been doing belly dancing since my 20yo was a baby so my knees don’t extend back like they did when I was a kid. However, my knee caps do dislocate. I have to wear special knee braces when I belly dance. Weird thing? The only places I have varicose veins is around my kneecaps, more so around the right one as it dislocated more often. Then, I’ve fallen so many times on the ice, & broken my tailbone so many times that bending over to touch the ground is a literal pain in my ass! 😹😹 Another funny thing? Took my Husbeast a few mins to get the joke “How many 46yo females do you know that can touch their ankle to their ear?!?” Another funny, found out a local EDS friend around my age does this too, we tighten our buttocks when standing to stabilize our hips? She told me she feels more stable I’m heels than flats too! Edited to add: oh! My one party trick? I never put my hands on my hips the “normal” way, & I didn’t know this wasn’t normal until the rhuemy saw me do it, the way I do it is I turn my hand backward, palm front, fingers pointing behind me, which puts my elbow pointing forward 🙀😬😳 Now that I’m older my MCP’s on both hands dislocate regularly. For me that’s the most painful. Middle finger MCP on right hand has been out all day & I wanna just chop my finger off!

The shoulder was so easy??? I can painlessly pull my shoulder away from the socket. Played with my knee cap as a kid. Heel to butt, duh. I can also sit on the ground and rotate my legs so that my heels are touching the outside of my hips. Or even do 90 degrees in the knees, knees together, butt on the ground, making a T instead of a W. It freaks people out. Also, I can press my palms together, fingers up, behind my shoulder blades. Barely pass the beighton test b/c I'm not sure if my knees hyperextend but I am definitely hypermobile overall.

I was shocked that I could do most of these. No one ever mentioned the least possibility that my “limberness” might be a medical issue. I like being flexible at a really advanced age, in spite of many broken bones and joints. Who knew? Not I.

@MJ-gj6mj

8 ай бұрын

In the same token, I'd like to be more mobile at a younger age than walking worse than my grandparent. No offense here, just frustrated that all this flexibilty is prob the root cause of my many, many injuries and cartilage damage :/

I did not know my PATELLAS could do that. Yikes lmaoooo

I've always been told I'm 'hyper mobile' and am waiting for EDS testing. I've injured literally every joint at some point but I have also been heavily involved in sport most my life. I'm not quite sure where I fit into the scale because I've always had chronic pain but every athlete is in pain a lot of the time. My joints have been super unstable and I sublax things all the time but I've put so much physio work in that some of them are semi-okay now IF I keep up a tonne of exercises. I just don't know where I fit in and feel like I don't fit in anywhere

@MJ-gj6mj

8 ай бұрын

same

started physical therapy this week for instability from hypermobility. The most painful dislocation for me is my ribs!

@MJ-gj6mj

8 ай бұрын

Did PT help??

@karacampbell5192

8 ай бұрын

@@MJ-gj6mj it did, definitely.

@MJ-gj6mj

8 ай бұрын

@@karacampbell5192 That's promising!

Wow! Only 4% touching the ground? In my family we use to think the one who couldn't do it was the odd one, lol! 😂

So so interesting! I really wish the testing was different too.

Why don't they use the ability to reach behind the back? As in: I could overlap my hands, palm to palm, touching my wrists with the middle finger of the opposite hand. My little brother and I used to play ducks, by twisting our arms behind our backs, holding onto our shoulder blades, and waving our elbows around, while quacking.

@northernfox6420

4 ай бұрын

My daughter calls her shoulder blades her dragon wings... lol

Yeah I think the hands to floor thing doesn't work for everyone, I can do it but it hurts my hips A LOT. And I do think they should test more joints 😄

Getting my hEDS diagnosis in The Netherlands they tested both the Bulbena/ hospital del mar score en the beighton score which gave a more conclusive answer for my doctor on how hypermobile I was (during testing I did dislocate quite a few joints, but I’m very prone to frequent severe dislocations (about 15 full and 25 partial dislocations per day and my worst joints (shoulders and jaw) have been operated on because it was the only possible solution)

ik this is an old video but i just want to say that i'm so tired of hand hypermobility being like a gold standard for general hypermobility/eds. my hands are not flexible almost at all, but the rest of my body is, however my hands always hurt, lock up, have nerve issues, and dislocate much easier than the rest of my body. it's like the range of motion is so low because as soon as anything goes just too far, everything is excruciating. i've had to explain to multiple doctors that yes i can move my thumb to my wrist, but i won't because i'll have nerve pain for days and possibly not be able to use pencils/writing utensils.

In the Beighton score my knees are the only that don't hiperextend but I also have troubles with them. I wonder if the mobility of the patella is more significant to cause problems in them maybe (?)

I think these tests can be so hurtful. My patellas (specially the right one) are so crazy hypermobile, and so painful, that every time anything pushes it out of place, I cannot walk for like, 6 months. I do not let anybody even come close to my knees. It actually makes me angry to the point I can hit them.