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 😂

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

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

Omg I have the same issue!

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

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.

@@IzzyKDNA yup :( .

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.

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

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

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

I have an anterior pelvic tilt

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.

⁰

Yes!!!

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.

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.

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

​@@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 ....

I can still touch my heel to my butt.

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.

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

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.

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

Same here

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!

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

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

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!

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

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

@@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.

I'm like that too!!

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.

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 😥

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

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.

Yes! 💯

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."

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!

Hope your PT went well!!!

Thanks Georgina!!

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

@@LifewithStripes would totally love to see more

"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.

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.

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

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.

@@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.

Country docs treat people like animals.

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

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.

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

@@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.

@@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.

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 :)

@@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!

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.

@@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.

same

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

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

@@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

I don't understand why it bothers Dr. so much to run a few diagnostic screenings. I mean, it's your money and your body...they get compensated well. Meanwhile, the patient lives in pain.

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

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 😭

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

@@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).

@@IzzyKDNA You actually did a combination of hip flexion and abduction. I would say the passive abduction test is like in this video: kzfaq.info/get/bejne/nZaImplp3trFiYU.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.

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

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

HDS has a high occurence with autism/ADHD

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.

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

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

In my opinion, I think it's less that hEDS isn't EDS but that hEDS is multiple EDS syndromes lumped together. If you look at how many people with EDS are hEDS type, it way outnumbers every other type and it's the only one without a specific gene.