Where are my bendy friends at?! 😂 I'm curious... did you always know you were "double jointed" or hypermobile? I always assumed I was only flexible from training it in gymnastics. This was surprising to learn about myself in late 2021!
@@zaeblet_ That's interesting. Ring finger? Mine is flexible too, and the middle finger. Thanks for teaching me the relationship to autism, I didn't know that! I think double-jointed is just kid slang for hypermobility, but I'm not sure!
Fellow bendy friend here (also with POTS, migraine, autism, all the fun EDS-related stuff)! I could never do the things my flexible peers could, like the splits, so I thought I was just stiff and definitely not ‘double-jointed’. My gastroenterologist tested me on the Beighton scale when I was around 9 and low and behold, I was indeed hypermobile, primarily in my upper body.
I’m hyper mobile but when I did this test with my dr my technical score was 2 for the wrists. My elbows and knees were at about 8-9% just missing the 10% mark they are looking for. My fingers similar thing, definitely could see I’m really close to the number they are scoring against. The final one my fingers are on the floor but my palms not fully touching the floor. We finish the test and the dr is writing things down and then turned back towards me and notes I’m sitting on the table with my legs pulled into a weird position and I’m basically folded over at the hips stretching myself out after these tests because my joints are all sore. The dr said to me well based on the test standards you don’t have hyper mobility but being so close on all of them plus looking at how you’re sitting right now I think we can just agree you are. I used to do a lot of gymnastics with my friends and I have a notebook where one of them left me a little message about how cool my bendy over trick with my hips was because none of them could do it. I left with a bunch of paperwork to try and pin down if a specific condition was the cause or not with high suspicion of EDS which was actually negative and I was positive for Sjögren’s syndrome which looks very similar in symptom presentation. I was also told that sometimes the bloodwork doesn’t show anything but the symptoms and hyper mobility can tell a lot about the direction they should be investigating. I’ve had that same blood panel done on 2 occasions years apart, first time I was negative, second positive. When we compared blood results against reported symptoms we found I tested positive when my symptoms were more noticeable and likely I was in a flare at the time of the second test. I think we repeated the test again when I wasn’t having as many symptoms and I think it was negative but I can’t remember exactly and my own notes just say the date and then some squiggly lines… 😂 not sure what that means I clearly need to have a word with myself about note taking. I was recently diagnosed with adhd and have heard there could be some connection between the two conditions in some people.
I didn’t even consider myself flexible until after my joint problems started! I have EDS, and we think I got it from my dad because his whole side of the family is hypermobile & has related issues. I was homeschooled, so had no exposure to a bunch of other kids in PE/gymnastics/dance or anything! Once I started doing theatre I realized that my body didn’t move like everyone else’s.
For me was diagnosed at age 57. Had a family history of hypermobility ,migraines, IBS, MTHFR C677T and MCAS. My mom ,sisters and cousins. We all have slightly differing symptoms. But are all Zebras and my older sister has a drippy nose Doctor told her it was chronic sinuses. She has a spinal leaking. Wish you continued secess on your wellness journey. ♡🙏
I am 20, I only have IBS, chronic abdominal pain, constipation, migraines. No joint pain or any other symptoms and just the mentioned ones. I got a couple of questions. Is this hypermobility thing a life threatening issue? Could it cause any more problems? Is it serious? Does it reduce life expectancy? I’m kinda worried! Thanks!
Thanks for the explanation on the knee joint part of the Beighton score. I thought my legs were straight until I tried your "flex your thigh while sitting on the floor and if your heel comes up..." thing and sure enough, foot upright and pointed, it was about ¾in off the floor. And there I was having doubts.
After being bedridden for 7 years and even going to Mayo Clinic I am finally diagnosed with EDS. I had no idea I had this and fighting over the years. Omg the neck, that’s why. Thank you so so much.
I've just been diagnosed with Hypermobility EDS. I'd honestly been wondering if you might've had it, since we have such similar symptoms sometimes (chronic migraines, POTs, etc). Wishing you all the best on this crazy journey, and hoping you can get everything figured out!
Congrats on your answers, I hope you are doing okay with your EDS. It's deceptively tough to live with. I'm a prime candidate, aren't I? Was doing this Beighton test part of your diagnosis process? This was just step 1 of several things they checked on for hEDS for me.
@@MommingwithMigraine Thanks, it was both stressful and very relieving to get my diagnosis. Haha you really are, so many of your issues over the years really seem like a lot of the issues related to HEDS. For me, it's been about accepting my limitations instead of trying to push through them to be "normal". And honestly, your videos have really helped by seeing someone else struggling with these issues. Yeah, they tested my Beighton score (8/9 haha, just couldn't touch the ground with my hands flat because of getting a compressed disc several years ago from standing too long...), along with for POTs, mast cell activation, and asked about migraines, stomach problems, chronic pain, and more generalized things.
@@MommingwithMigraine I am experiencing so much of what you describe in some of your videos. I truly think EDS could be the answer for you. Just think about it please. A lot of the stuff you describe dealing with are common comobitities of EDS. POTS,IIH,CFS leaks,ect. If you need more evidence to justify looking into it I have resources i can share. I’ve been blown off by doctors for years and recognize so much of what you are talking about in my own experience.
@@ciliciaging4991 nightmare for me CFS 26 years diagnosis fybromyalgia 2018 which I don't no if it's still CFS as CFS you get pain.neuroligist said it's migraine in my shoulders armpits? Heal pain from rest ime hypomobile all allover heal with keyloids.not sure if eds or hsd rhumo doesn't no hypomobility all over.diagnosed yesterday Asperger's mum hypomobility severe ms had detached retinas and a prolapse in past.how do we no if it's CFS leak causing pain or migraine or fybromyalgia
Thank you for spreading awareness. I was diagnosed with hEDS and I scored 7/9. My little fingers are not hypermobile but I scored positive for thumbs, elbows, knees and spine. I also have TMJD, flat feet, knee issues, shoulder issues and much more. The journey to an EDS diagnosis was difficult even though my identical twin sister was diagnosed before me... If I struggled I can't imagine what it must be like for others! Thanks again. Xxx
So far I'm diagnosed with ADHD, endometriosis, chiari malformation type 1 and I also meet the diagnostic criteria for hEDS (not just beighton, I get a 6, but the skin issues etc) and I'm 98% I have POTS. I'm finding that its all linked!
Watching your channel like two years ago keyed me into my own dysautonomia, which has led down a WILD path of discovery. Recently, my sleep doctor brought up EDS, which I knew about but also didn't think fit because, much like my narcolepsy, I only knew the stereotypical bullet points and not the whole picture. Funnily, I've always been 'weirdly flexible,' but not double jointed in anything other than my pinkies and maybe my hips. Recently realized I've been subluxing my tendons pretty much since forever, which is absolutely an EDS thing.... But I'd been discounting it as just my weird pain and extra flexibility, since what I knew about EDS was largely dislocations, of which I've had extremely few and only very, very recently. Further keying into the whole EDS thing is the fact that I was diagnosed as ADHD years ago, but have had an autistic self discovery the last few years. Guess what's often comorbid with those two conditions? Yepppp. So is MCAS, which I'm in the process of being tested for. My aphasia (I think we talked about how we both experience vocal aphasia, but can weirdly still communicate in ASL to others, and understand spoken word FROM others while affected) and migraines may also be part of the autism, which has been an interesting discovery. All that to say that I'm glad you keep sharing on your channel, because even as you're discovering and seeking and discovering again about yourself, you're helping other mystery cases find kinship, and the right questions to ask.
HEDS here!! 7 on the Beighton score. I am 45 and have pretty bad arthritis and am currently undergoing prolo therapy in my lower spine and knee and starting my neck. I too also have a leak. God bless you.
Also omg Jen I just got to the part where you STAND ON A SPINNY ROLLY CHAIR AND REPEATEDLY BEND ALL THE WAY OVER AND STAND UP what do you think you are doing
My doc did a half test and didn't think I was hypermobile. So I told him I wanted to show him a few things. I folded over and touched the floor, did prayer hands behind my back and put my knee begin my shoulder. While sitting in a chair. He smiled and said 'okay I see what you mean, you could join the circus with that.' :')
I have connective tissue disorder they just don't necessarily think it's eds. I had surgery for chiari this year and it gave me part of my life back, working on the other part still 😅 I found you when I first started dealing with these more severe symptoms in my second pregnancy. Crazy that it's so hard for these symptoms to be diagnosed in people when there seems to be quite a few of us. I did have a tiny csf leak they found during my surgery which was surprising, they never would've found it if I hadn't had someone to do chiari surgery tho because my brain was blocking most flow. Hope your doing ok and hope the family is well 💕
I learned I have hypermobile EDS at age 58 when my bendy cousin's daughter and grandkids were diagnosed. (My cousin used to do all sort of party tricks, like tucking her legs behind her head and walking on her knees...we should have gotten home movies of that one but sadly never did.) Learning from them, things started to click in my brain, even though I was not quite that hypermobile!. It still took another couple of years to find a doctor who knew enough to diagnose me. I obviously am not as flexible as I used to be, but at age 58 I scored a 6 on the Beighton scale. Lots sprains growing up. Also gastrointestinal involvement and venous insufficiency now. Cranio Cervical Instability that I'm trying to address right now too, so i'm very interested to hear about your neck! I'm guessing that is a big contributor to our chronic migraines.
Hi thanks for sharing your storie i am 43 and been diagnosed with hypermobility syndrome , i had score 7 out of 9, when the doctor asked me if i consider myself double jointed ,i was like i dont know😂. I do get a lot of paind all over my joints and body ,specially fatigue ,tired like i cant be bother t9 do things ,lack of energy ,in my past i was energetic like adhd ( not diagnosed though), now ive been refer to the neurologist to find out why i get memory lost even i forget frequently what i was saying in yhe conversation,saying that i had to many child traumas so i believe its gonna be difficult to find out the cause,i cant even remember my childhood or my children good memories when they came and ask of i remember certain things, i do sufer from panic attacks ,stress anxiety and other things ,the list is long 😂,hopefully im still alive to ny 90s
I have done so much dancing. Like Jen and gymnastics ballet causes flexibility also. Jen and I developed a body awareness do to these activities. It is important to keep in mind that these type of activities do not always affect all joints. This is why the test has some weird joint are tested like the thumb to the wrist. Personally I do not have this issue but can see where this could lead to inflammation.
@@Chronically.ServiceDogJones aww you're so sweet! There are some in IG if you scroll down. Want to find the one you like best? instagram.com/mommingwithmigraine
i havent been tested for EDS yet but i am extremely hypermobile. but not really flexible weirdly enough. my hypermobility causes alot of pain. my neck is constantly stiff
After suspecting for over 2 years that I might have it - the main things that clued me in was that it took a full 9 months for a broken toe to heal, my orthopedist said that my shoulder dislocating when I was little (I was so small that my parents could still pick me up by one arm until after I turned 4, and one of those times it dislocated) was most likely due to something genetic, and my chiropractor telling me that I was extremely flexible even though I don't do anything to build or maintain that flexibility (I did ballet once and gymnastics a couple times, but that was kindergarten, 1st, and 3rd grade, respectively, and I haven't done either one in the last 20 years); my mom also called me a contortionist when I was in grade school because I could get into small tight spaces that no one else could (I never showed off as party tricks or anything, though) - I was officially diagnosed with hEDS last week Tuesday. I have a Beighton (I've always heard it pronounced "BAY-ton", but you're right, it does look like it could be either one) score of either 5 or 7 (pretty sure my elbows go at least 10 degrees beyond, but we haven't actually measured them; my knees, back, and pinkies hyperextend the required amount), with the only ones me not being able to do being the thumb to wrist - I've sprained my wrists a bajillion times (mostly from playing volleyball for fun - for almost 15 years, I've had to wear wrist braces when I do, otherwise I pay dearly for it the next day or two), and at least one of the bones in each wrist is chronically subluxed from that, causing decreased mobility, so that's probably why, since I used to be able to do it when I was younger. The current official hEDS (I know that's only one subtype, so I'm not claiming that it necessarily applies to all the types, because I'm not familiar enough with the other 12 to know whether it does or not) diagnostic criteria requires a minimum Beighton score of 6 for pre-pubertal kids and adolescents, 5 for pubertal men and women up to age 50, and 4 for men and women over age 50, with additional criteria if one point below the applicable minimum. Even with the different diagnostic criteria back then, I'm pretty darn sure I still would have tested positive for hEDS back in 8th or 9th grade (almost 15 years ago), but I didn't suspect it at all back then because I didn't have joints sublux or dislocate randomly, at least I didn't think I did (turns out things did sublux, especially while sleeping, I just didn't realize it at the time), because they didn't do it the same way that they did for my best friend, who was diagnosed with EDS-III (now hEDS) when we were 14. With POTS and OTA mold poisoning (the latter is definitive proof of a genetic mutation - I forget which gene it is, but ~25% of the population has the mutation, and it makes it nearly impossible to literally impossible for the body to detox on its own), after listening to the video you linked about POTS and CSF leaks, I'm starting to suspect that I might possibly have a leak as well, especially since the hEDS has been confirmed. Last summer I started get bouts of allergic rhinitis that I wasn't entirely sure what was causing them at first, so each time I start getting one, I test it with my glucometer, just to make sure it's not from a leak, and thus far it hasn't been, but that doesn't rule out a leak somewhere else that isn't causing my nose to run with CSF.
@@MommingwithMigraine I've been diagnosed with Degenerative Disc Disease and have several herniated discs in my lumbar spine. I've had back pain since I was a teenager but no one ever wanted to figure out why. I've been prone to migraines my whole life. I have Reynauds in my feet and very mildly in my hands. I've always had reflux and severe period pain and extremely heavy bleeding. I didn't have an idyllic childhood and so I was never taken to the doctor to diagnose any of these issues that have been going on so long that now as an adult it just felt normal until I was watching your video.
I'm trying to get a diagnosis for the various health issues I have. I just saw a geneticist for possible hEDS or HSD, we'll see what happens. I have a Beighton score of 6, along with lots of joint pain, symptoms that look like POTS to me, migraines... I've also been wondering if you'd ever been assessed for any kind of EDS because so many of your symptoms and diagnoses fit.
I think (speculation) the sensory issues autism/adhd people face is in part caused by these disorders, and how it interacts internally with developing nerves/nerve endings and such!
I’ve always been extra bendy and after my POTS diagnosis we were asked if I was ever “bendy” as a child and it all kicked off my HEDS diagnosis journey
I'm generally very stiff and not all that flexible. I have a lot of joint pain though, and my joints seem weak. Like, I strain my thumbs really easily, and my ankles and knees give out randomly while I'm walking. My TMJ kills me, ugh. This test seems to show that my knees are definitely hypermobile-- I could lift my feet off the ground by flexing my thighs, with my feet pointed or flexed. I think that my thumbs are hypermobile too. I can pull them to my wrists. I'm not completely sure if I would get points for them if a doctor did it properly. But if so, that's a 4, I suppose. I'm not sure about my elbows-- I've had a friend tell me they hyperextend, but I'm not so sure myself. My pinky fingers do not bend back 90 degrees. As for my back, when I was a kid I could touch my hands flat on the floor, but now I can't, but I think it's because of my belly fat in the way of me bending over completely... I wonder if doctors can account for that at all. I feel that I have some sort of hypermobility-associated problem causing my joint pain. Probably not enough to be EDS, but maybe, idk. I don't trust doctors though and don't know who I would go to to get assessed or how they would help. I feel they'd just tell me to lose weight. I want help and to not be in pain but... sigh I feel like maybe I'm just a whiner lol. People have it way worse. I have friends with EDS who have it way worse.
It doesn't cover all the types, but the Ehlers-Danlos Society has the current hEDS diagnostic criteria (which is designed to be able to be used by medical professionals in any discipline) on their website. It may or may not be what you have, but the criteria on there might at least be a starting point. When I started suspecting I might have it, I went through that list to see how many of them that I met, and it was enough to get that diagnosis - I brought the completed checklist to a dr. appointment and my primary and I went through the list together to confirm it. They have a ton of info on the other types on the website as well, and I'm pretty sure on HSD (hypermobile spectrum disorder), too, so that might also be helpful if hEDS doesn't seem to quite fit. Hopefully it'll give you at least a place to start. I wasn't officially diagnosed until last week, and I only started suspecting that I might have it about 2 1/2 years ago because several things all came together to prompt me to look into it, because my best friend was diagnosed with it when we were 14 (we're more than twice that now) and I didn't get the joints going out randomly and painfully the way she did (turns out I had plenty of joints that were subluxing - e.g. my ankles would sometimes slide in and out while I was walking, and when it happened at track meets, it usually caused me to drop out of my running events at the last minute, and a bunch subluxed painlessly while I was sleeping - I just didn't know that that's what it was, because, except for the ankles, it wasn't usually painful back then). So I delayed pursuing it because my friend and several people I watched on TH-cam had it worse than I do, but it turns out that I do in fact have it, too, it just presents differently - just because someone else has it worse than you doesn't mean that you don't deserve answers as well.
While I don't have whole-body hypermobility, I do have a couple bulging/squishy disks in my back, and when my vertebrae are extra mobile, my entire lower back turns into a giant knot to keep my spine still. So I have definitely endured the hypermobility of a joint can create extra stiffness.
I always just described myself as bendy. I feel like an overachiever scoring a 7 out of 9, only not getting the elbows. I have several other fun issues that are apparently all related. I had no idea until recently. After digging into this more, maybe I'm not the first to say this, but I'm calling it "superhero disorder". My brother got "nerd disorder" aka aspergers, so I get a cool disorder name too.
I have hEDS, POTS, chronic and hemiplegic migraines, etc… I always knew I was somewhat flexible but when I would do my “tricks” I thought I couldn’t be double jointed because they would hurt.
I have EDS, it took 30 years to diagnose; my 'Journey to Diagnosis' in on my Instagram. I remember saying to you years ago I thought you also had EDS and CF Leaks, just like me. Xxx
@@MommingwithMigraine thank you for sharing your journey too! It's only through talking about our journeys that we all help to spread awareness. If I can save people going through so many years of misdiagnosis by telling my story, then it's totally worth it. Lots of love to you and anyone reading this Xx
Huh... I always thought i was hypermobile. Now I'm pretty sure I am. I just couldn't touch my thumb to my forearms. I have arthritis, and pinched nerves in my spine. Otherwise it just suddenly showed up when i was in my late teens. Super flexible and sore all the time, but I'm still moving so that's a win.
I hope you're not paying for that 9'th point exercise. "Tyrone, you know how much I love watching you work. But I’ve got my country’s 500th anniversary to plan, my wedding to arrange, my wife to murder, and Guilder to frame for it. I’m swamped!" "Get some rest. If you haven’t got your health, you haven’t got anything."
I was in my early 50s when I learned I was hypermobile. From watching a "only 10% of the population can do this" youtube video. My mother always told me I was stiff because I wasn't a contortionist like her. Jokes on her I'm hypermobile and have more issues with my joints than she does. Her problems were mostly with her back. I got all the comorbidities.
I think it helped a lot with range of motion in my jaw and just general neck/jaw stiffness. I don't tire chewing as much, and I'm able to clean my teeth with my tongue more thoroughly. I'm happy I did it, but it didn't fix everything of course.
@@MommingwithMigraine Would you suggest starting with a dentist or a specialist ENT (I forget what specialty you said it was because it has been forever since I watched the video) for pursuing getting ties evaluated for potential revision? Turns out I've got both a tongue tie and 2 lip ties (one top, one bottom), and I'm starting to suspect that at least the tongue tie is affecting my jaw (wisdom tooth surgery 8 years ago caused it to be stuck subluxed sideways, severely affecting my singing ability, and we only just started to be able to fix that a year ago) and other things, and might also be the root cause of me getting a lot of really deep pit cavities in my molars when I was in junior high and high school (probably compounded by the EDS as well as developing an allergy to fluoride). I never suspected I had any ties until I watched your first video on it, though, because a friend of mine had one when we were in grade school that went almost to the tip of her tongue, keeping the tip of it from being able to go out past her front teeth (I obviously knew that wasn't normal, because I and everyone else that I knew could do it), but I didn't know that having an intact frenulum at all, regardless of size, wasn't normal.
I got 7/9 based on this video, i lost point because i can't straight my legs over 180 degrees. I can touch the floor with straight legs but i can do it because I worked on my flexibility and i couldn't do it before I worked on my flexibility
Is it normal to be able to turn your leg fully around to shave the back of your leg? I have always done that but it freaks my partner when he sees me do it
I accidentally came across eds and beighton score... and now I am freaked because I already have a chronic illness... and I am passing almost on all counts and thought all of this was normal... and turns out it's not like tf!!?
You don't like having to to say high to the camera? Pretend you are greeting a good friend, because in a very true sense, that is exactly what you are doing. Granted, you don't get instant feedback, which is probably why it feels weird.
Where are my bendy friends at?! 😂 I'm curious... did you always know you were "double jointed" or hypermobile? I always assumed I was only flexible from training it in gymnastics. This was surprising to learn about myself in late 2021!
@@zaeblet_ That's interesting. Ring finger? Mine is flexible too, and the middle finger. Thanks for teaching me the relationship to autism, I didn't know that! I think double-jointed is just kid slang for hypermobility, but I'm not sure!
@@zaeblet_ I'm also autistic and have hypermobile EDS! From what I've read, they do go together.
Fellow bendy friend here (also with POTS, migraine, autism, all the fun EDS-related stuff)! I could never do the things my flexible peers could, like the splits, so I thought I was just stiff and definitely not ‘double-jointed’. My gastroenterologist tested me on the Beighton scale when I was around 9 and low and behold, I was indeed hypermobile, primarily in my upper body.
I’m hyper mobile but when I did this test with my dr my technical score was 2 for the wrists. My elbows and knees were at about 8-9% just missing the 10% mark they are looking for. My fingers similar thing, definitely could see I’m really close to the number they are scoring against. The final one my fingers are on the floor but my palms not fully touching the floor. We finish the test and the dr is writing things down and then turned back towards me and notes I’m sitting on the table with my legs pulled into a weird position and I’m basically folded over at the hips stretching myself out after these tests because my joints are all sore. The dr said to me well based on the test standards you don’t have hyper mobility but being so close on all of them plus looking at how you’re sitting right now I think we can just agree you are. I used to do a lot of gymnastics with my friends and I have a notebook where one of them left me a little message about how cool my bendy over trick with my hips was because none of them could do it. I left with a bunch of paperwork to try and pin down if a specific condition was the cause or not with high suspicion of EDS which was actually negative and I was positive for Sjögren’s syndrome which looks very similar in symptom presentation. I was also told that sometimes the bloodwork doesn’t show anything but the symptoms and hyper mobility can tell a lot about the direction they should be investigating. I’ve had that same blood panel done on 2 occasions years apart, first time I was negative, second positive. When we compared blood results against reported symptoms we found I tested positive when my symptoms were more noticeable and likely I was in a flare at the time of the second test. I think we repeated the test again when I wasn’t having as many symptoms and I think it was negative but I can’t remember exactly and my own notes just say the date and then some squiggly lines… 😂 not sure what that means I clearly need to have a word with myself about note taking. I was recently diagnosed with adhd and have heard there could be some connection between the two conditions in some people.
I didn’t even consider myself flexible until after my joint problems started! I have EDS, and we think I got it from my dad because his whole side of the family is hypermobile & has related issues. I was homeschooled, so had no exposure to a bunch of other kids in PE/gymnastics/dance or anything! Once I started doing theatre I realized that my body didn’t move like everyone else’s.
For me was diagnosed at age 57. Had a family history of hypermobility ,migraines, IBS, MTHFR C677T and MCAS. My mom ,sisters and cousins. We all have slightly differing symptoms. But are all Zebras and my older sister has a drippy nose Doctor told her it was chronic sinuses. She has a spinal leaking. Wish you continued secess on your wellness journey. ♡🙏
I am 20, I only have IBS, chronic abdominal pain, constipation, migraines. No joint pain or any other symptoms and just the mentioned ones. I got a couple of questions. Is this hypermobility thing a life threatening issue? Could it cause any more problems? Is it serious? Does it reduce life expectancy? I’m kinda worried! Thanks!
Glad you finally found out. Can you elaborate on the spinal leaking? Is there a term for this?
How did she find out spinal leaking and not just rhinitis what all zebras seam suffer with at some point
Thanks for the explanation on the knee joint part of the Beighton score. I thought my legs were straight until I tried your "flex your thigh while sitting on the floor and if your heel comes up..." thing and sure enough, foot upright and pointed, it was about ¾in off the floor. And there I was having doubts.
After being bedridden for 7 years and even going to Mayo Clinic I am finally diagnosed with EDS. I had no idea I had this and fighting over the years. Omg the neck, that’s why. Thank you so so much.
I've just been diagnosed with Hypermobility EDS. I'd honestly been wondering if you might've had it, since we have such similar symptoms sometimes (chronic migraines, POTs, etc). Wishing you all the best on this crazy journey, and hoping you can get everything figured out!
Congrats on your answers, I hope you are doing okay with your EDS. It's deceptively tough to live with. I'm a prime candidate, aren't I? Was doing this Beighton test part of your diagnosis process? This was just step 1 of several things they checked on for hEDS for me.
@@MommingwithMigraine Thanks, it was both stressful and very relieving to get my diagnosis. Haha you really are, so many of your issues over the years really seem like a lot of the issues related to HEDS. For me, it's been about accepting my limitations instead of trying to push through them to be "normal". And honestly, your videos have really helped by seeing someone else struggling with these issues.
Yeah, they tested my Beighton score (8/9 haha, just couldn't touch the ground with my hands flat because of getting a compressed disc several years ago from standing too long...), along with for POTs, mast cell activation, and asked about migraines, stomach problems, chronic pain, and more generalized things.
@@MommingwithMigraine I am experiencing so much of what you describe in some of your videos. I truly think EDS could be the answer for you. Just think about it please. A lot of the stuff you describe dealing with are common comobitities of EDS. POTS,IIH,CFS leaks,ect. If you need more evidence to justify looking into it I have resources i can share. I’ve been blown off by doctors for years and recognize so much of what you are talking about in my own experience.
@@ciliciaging4991 nightmare for me CFS 26 years diagnosis fybromyalgia 2018 which I don't no if it's still CFS as CFS you get pain.neuroligist said it's migraine in my shoulders armpits? Heal pain from rest ime hypomobile all allover heal with keyloids.not sure if eds or hsd rhumo doesn't no hypomobility all over.diagnosed yesterday Asperger's mum hypomobility severe ms had detached retinas and a prolapse in past.how do we no if it's CFS leak causing pain or migraine or fybromyalgia
Thank you for spreading awareness. I was diagnosed with hEDS and I scored 7/9. My little fingers are not hypermobile but I scored positive for thumbs, elbows, knees and spine. I also have TMJD, flat feet, knee issues, shoulder issues and much more. The journey to an EDS diagnosis was difficult even though my identical twin sister was diagnosed before me... If I struggled I can't imagine what it must be like for others! Thanks again. Xxx
So far I'm diagnosed with ADHD, endometriosis, chiari malformation type 1 and I also meet the diagnostic criteria for hEDS (not just beighton, I get a 6, but the skin issues etc) and I'm 98% I have POTS. I'm finding that its all linked!
Yes it is Asperger's OCD CFS fybromyalgia hiatus hernia opp hsd or eds not sure what I have hypomobilty all over heal keyloids migraine
Watching your channel like two years ago keyed me into my own dysautonomia, which has led down a WILD path of discovery. Recently, my sleep doctor brought up EDS, which I knew about but also didn't think fit because, much like my narcolepsy, I only knew the stereotypical bullet points and not the whole picture. Funnily, I've always been 'weirdly flexible,' but not double jointed in anything other than my pinkies and maybe my hips. Recently realized I've been subluxing my tendons pretty much since forever, which is absolutely an EDS thing.... But I'd been discounting it as just my weird pain and extra flexibility, since what I knew about EDS was largely dislocations, of which I've had extremely few and only very, very recently. Further keying into the whole EDS thing is the fact that I was diagnosed as ADHD years ago, but have had an autistic self discovery the last few years. Guess what's often comorbid with those two conditions? Yepppp. So is MCAS, which I'm in the process of being tested for. My aphasia (I think we talked about how we both experience vocal aphasia, but can weirdly still communicate in ASL to others, and understand spoken word FROM others while affected) and migraines may also be part of the autism, which has been an interesting discovery.
All that to say that I'm glad you keep sharing on your channel, because even as you're discovering and seeking and discovering again about yourself, you're helping other mystery cases find kinship, and the right questions to ask.
Such interesting timing that you posted this today! I was just trying the Beighton on myself two days ago.
HEDS here!! 7 on the Beighton score. I am 45 and have pretty bad arthritis and am currently undergoing prolo therapy in my lower spine and knee and starting my neck. I too also have a leak. God bless you.
Yah bless You too ❤
I love how you call your videos "TH-cams". You're the only creator I've come across who does that, it's endearing hahaha
Also omg Jen I just got to the part where you STAND ON A SPINNY ROLLY CHAIR AND REPEATEDLY BEND ALL THE WAY OVER AND STAND UP what do you think you are doing
@@marialegare3954 I told you not to tell 😇
@@marialegare3954 but let's be honest I did great 🤣🤣🤣🤣🤣🤣🤣🤣
@@MommingwithMigraine says the lady who posted it on the interwebs for the whole world to see, I'm not sorry
@@MommingwithMigraine You did! Perfect balance and everything! Please don't do that to us again though 😂
My doc did a half test and didn't think I was hypermobile. So I told him I wanted to show him a few things. I folded over and touched the floor, did prayer hands behind my back and put my knee begin my shoulder. While sitting in a chair. He smiled and said 'okay I see what you mean, you could join the circus with that.' :')
I have connective tissue disorder they just don't necessarily think it's eds. I had surgery for chiari this year and it gave me part of my life back, working on the other part still 😅 I found you when I first started dealing with these more severe symptoms in my second pregnancy. Crazy that it's so hard for these symptoms to be diagnosed in people when there seems to be quite a few of us. I did have a tiny csf leak they found during my surgery which was surprising, they never would've found it if I hadn't had someone to do chiari surgery tho because my brain was blocking most flow. Hope your doing ok and hope the family is well 💕
I learned I have hypermobile EDS at age 58 when my bendy cousin's daughter and grandkids were diagnosed. (My cousin used to do all sort of party tricks, like tucking her legs behind her head and walking on her knees...we should have gotten home movies of that one but sadly never did.) Learning from them, things started to click in my brain, even though I was not quite that hypermobile!. It still took another couple of years to find a doctor who knew enough to diagnose me. I obviously am not as flexible as I used to be, but at age 58 I scored a 6 on the Beighton scale. Lots sprains growing up. Also gastrointestinal involvement and venous insufficiency now. Cranio Cervical Instability that I'm trying to address right now too, so i'm very interested to hear about your neck! I'm guessing that is a big contributor to our chronic migraines.
How was craniel instability seen I went to get checked but told me craniel junction is in place but hypomobile
Hi thanks for sharing your storie i am 43 and been diagnosed with hypermobility syndrome , i had score 7 out of 9, when the doctor asked me if i consider myself double jointed ,i was like i dont know😂. I do get a lot of paind all over my joints and body ,specially fatigue ,tired like i cant be bother t9 do things ,lack of energy ,in my past i was energetic like adhd ( not diagnosed though), now ive been refer to the neurologist to find out why i get memory lost even i forget frequently what i was saying in yhe conversation,saying that i had to many child traumas so i believe its gonna be difficult to find out the cause,i cant even remember my childhood or my children good memories when they came and ask of i remember certain things, i do sufer from panic attacks ,stress anxiety and other things ,the list is long 😂,hopefully im still alive to ny 90s
I have done so much dancing. Like Jen and gymnastics ballet causes flexibility also. Jen and I developed a body awareness do to these activities. It is important to keep in mind that these type of activities do not always affect all joints. This is why the test has some weird joint are tested like the thumb to the wrist. Personally I do not have this issue but can see where this could lead to inflammation.
I was recently diagnosed with hEDS and I had a score of 8 as well as most of the other symptoms.
I have EDS and POTS and Migraines so this channel, jen you get me.
I get you SO MUCH
@@MommingwithMigraine thank you.
i dont see many photos of you and buddy and i want to draw you guys. if possible could you post one on your communtiy?
@@Chronically.ServiceDogJones aww you're so sweet! There are some in IG if you scroll down. Want to find the one you like best? instagram.com/mommingwithmigraine
@@MommingwithMigraine thank you so much. i found one. i will post it on my channel or find a way to get it to you
Oh my goodness I have EDS too!! I was diagnosed earlier this year!!!
i havent been tested for EDS yet but i am extremely hypermobile. but not really flexible weirdly enough. my hypermobility causes alot of pain. my neck is constantly stiff
After suspecting for over 2 years that I might have it - the main things that clued me in was that it took a full 9 months for a broken toe to heal, my orthopedist said that my shoulder dislocating when I was little (I was so small that my parents could still pick me up by one arm until after I turned 4, and one of those times it dislocated) was most likely due to something genetic, and my chiropractor telling me that I was extremely flexible even though I don't do anything to build or maintain that flexibility (I did ballet once and gymnastics a couple times, but that was kindergarten, 1st, and 3rd grade, respectively, and I haven't done either one in the last 20 years); my mom also called me a contortionist when I was in grade school because I could get into small tight spaces that no one else could (I never showed off as party tricks or anything, though) - I was officially diagnosed with hEDS last week Tuesday.
I have a Beighton (I've always heard it pronounced "BAY-ton", but you're right, it does look like it could be either one) score of either 5 or 7 (pretty sure my elbows go at least 10 degrees beyond, but we haven't actually measured them; my knees, back, and pinkies hyperextend the required amount), with the only ones me not being able to do being the thumb to wrist - I've sprained my wrists a bajillion times (mostly from playing volleyball for fun - for almost 15 years, I've had to wear wrist braces when I do, otherwise I pay dearly for it the next day or two), and at least one of the bones in each wrist is chronically subluxed from that, causing decreased mobility, so that's probably why, since I used to be able to do it when I was younger.
The current official hEDS (I know that's only one subtype, so I'm not claiming that it necessarily applies to all the types, because I'm not familiar enough with the other 12 to know whether it does or not) diagnostic criteria requires a minimum Beighton score of 6 for pre-pubertal kids and adolescents, 5 for pubertal men and women up to age 50, and 4 for men and women over age 50, with additional criteria if one point below the applicable minimum. Even with the different diagnostic criteria back then, I'm pretty darn sure I still would have tested positive for hEDS back in 8th or 9th grade (almost 15 years ago), but I didn't suspect it at all back then because I didn't have joints sublux or dislocate randomly, at least I didn't think I did (turns out things did sublux, especially while sleeping, I just didn't realize it at the time), because they didn't do it the same way that they did for my best friend, who was diagnosed with EDS-III (now hEDS) when we were 14.
With POTS and OTA mold poisoning (the latter is definitive proof of a genetic mutation - I forget which gene it is, but ~25% of the population has the mutation, and it makes it nearly impossible to literally impossible for the body to detox on its own), after listening to the video you linked about POTS and CSF leaks, I'm starting to suspect that I might possibly have a leak as well, especially since the hEDS has been confirmed. Last summer I started get bouts of allergic rhinitis that I wasn't entirely sure what was causing them at first, so each time I start getting one, I test it with my glucometer, just to make sure it's not from a leak, and thus far it hasn't been, but that doesn't rule out a leak somewhere else that isn't causing my nose to run with CSF.
I’m mindblown. I didn’t think about it that way, was kind of thinking it was normal.
Holy shit. This explains a lot. I always just thought that I was just flexible. It's always been a party trick.
I love brain blasts like this! Oh gosh, do you have other random symptoms from it?
@@MommingwithMigraine I've been diagnosed with Degenerative Disc Disease and have several herniated discs in my lumbar spine. I've had back pain since I was a teenager but no one ever wanted to figure out why. I've been prone to migraines my whole life. I have Reynauds in my feet and very mildly in my hands. I've always had reflux and severe period pain and extremely heavy bleeding.
I didn't have an idyllic childhood and so I was never taken to the doctor to diagnose any of these issues that have been going on so long that now as an adult it just felt normal until I was watching your video.
I'm trying to get a diagnosis for the various health issues I have. I just saw a geneticist for possible hEDS or HSD, we'll see what happens. I have a Beighton score of 6, along with lots of joint pain, symptoms that look like POTS to me, migraines...
I've also been wondering if you'd ever been assessed for any kind of EDS because so many of your symptoms and diagnoses fit.
Hypermobility/connective tissue disorders is very often comorbid with neurodivergence (adhd/autism/etc)
I think (speculation) the sensory issues autism/adhd people face is in part caused by these disorders, and how it interacts internally with developing nerves/nerve endings and such!
@@Redsammeh yes diagnosed yesterday Asperger's
I’ve always been extra bendy and after my POTS diagnosis we were asked if I was ever “bendy” as a child and it all kicked off my HEDS diagnosis journey
I'm generally very stiff and not all that flexible. I have a lot of joint pain though, and my joints seem weak. Like, I strain my thumbs really easily, and my ankles and knees give out randomly while I'm walking. My TMJ kills me, ugh.
This test seems to show that my knees are definitely hypermobile-- I could lift my feet off the ground by flexing my thighs, with my feet pointed or flexed. I think that my thumbs are hypermobile too. I can pull them to my wrists. I'm not completely sure if I would get points for them if a doctor did it properly. But if so, that's a 4, I suppose.
I'm not sure about my elbows-- I've had a friend tell me they hyperextend, but I'm not so sure myself. My pinky fingers do not bend back 90 degrees. As for my back, when I was a kid I could touch my hands flat on the floor, but now I can't, but I think it's because of my belly fat in the way of me bending over completely... I wonder if doctors can account for that at all.
I feel that I have some sort of hypermobility-associated problem causing my joint pain. Probably not enough to be EDS, but maybe, idk. I don't trust doctors though and don't know who I would go to to get assessed or how they would help. I feel they'd just tell me to lose weight.
I want help and to not be in pain but... sigh I feel like maybe I'm just a whiner lol. People have it way worse. I have friends with EDS who have it way worse.
It doesn't cover all the types, but the Ehlers-Danlos Society has the current hEDS diagnostic criteria (which is designed to be able to be used by medical professionals in any discipline) on their website. It may or may not be what you have, but the criteria on there might at least be a starting point. When I started suspecting I might have it, I went through that list to see how many of them that I met, and it was enough to get that diagnosis - I brought the completed checklist to a dr. appointment and my primary and I went through the list together to confirm it. They have a ton of info on the other types on the website as well, and I'm pretty sure on HSD (hypermobile spectrum disorder), too, so that might also be helpful if hEDS doesn't seem to quite fit. Hopefully it'll give you at least a place to start.
I wasn't officially diagnosed until last week, and I only started suspecting that I might have it about 2 1/2 years ago because several things all came together to prompt me to look into it, because my best friend was diagnosed with it when we were 14 (we're more than twice that now) and I didn't get the joints going out randomly and painfully the way she did (turns out I had plenty of joints that were subluxing - e.g. my ankles would sometimes slide in and out while I was walking, and when it happened at track meets, it usually caused me to drop out of my running events at the last minute, and a bunch subluxed painlessly while I was sleeping - I just didn't know that that's what it was, because, except for the ankles, it wasn't usually painful back then). So I delayed pursuing it because my friend and several people I watched on TH-cam had it worse than I do, but it turns out that I do in fact have it, too, it just presents differently - just because someone else has it worse than you doesn't mean that you don't deserve answers as well.
When you stood up on the chair to bend over I yelled "don't do that!" Glad you didn't fall, haha
While I don't have whole-body hypermobility, I do have a couple bulging/squishy disks in my back, and when my vertebrae are extra mobile, my entire lower back turns into a giant knot to keep my spine still. So I have definitely endured the hypermobility of a joint can create extra stiffness.
Was diagnosed with HEds in June. I have stomach issues, chronic pain, migraines, fatigue, and psychological issues.
Where is your main pain
@@Truerealism747 neck and shoulders are my biggest issue
I always just described myself as bendy. I feel like an overachiever scoring a 7 out of 9, only not getting the elbows. I have several other fun issues that are apparently all related. I had no idea until recently. After digging into this more, maybe I'm not the first to say this, but I'm calling it "superhero disorder". My brother got "nerd disorder" aka aspergers, so I get a cool disorder name too.
I have hEDS, POTS, chronic and hemiplegic migraines, etc… I always knew I was somewhat flexible but when I would do my “tricks” I thought I couldn’t be double jointed because they would hurt.
Do you feel your.migraines in your head or shoulders area as my rhumotoligist says I have migraines empigelic dint have to be in the head
I have EDS, it took 30 years to diagnose; my 'Journey to Diagnosis' in on my Instagram. I remember saying to you years ago I thought you also had EDS and CF Leaks, just like me. Xxx
I wonder if you were the one who made me realize my leak back in Sept of 2021! Thank you for being here & for sharing your story!
@@MommingwithMigraine thank you for sharing your journey too! It's only through talking about our journeys that we all help to spread awareness. If I can save people going through so many years of misdiagnosis by telling my story, then it's totally worth it. Lots of love to you and anyone reading this Xx
Huh... I always thought i was hypermobile. Now I'm pretty sure I am. I just couldn't touch my thumb to my forearms. I have arthritis, and pinched nerves in my spine. Otherwise it just suddenly showed up when i was in my late teens. Super flexible and sore all the time, but I'm still moving so that's a win.
I hope you're not paying for that 9'th point exercise. "Tyrone, you know how much I love watching you work. But I’ve got my country’s 500th anniversary to plan, my wedding to arrange, my wife to murder, and Guilder to frame for it. I’m swamped!" "Get some rest. If you haven’t got your health, you haven’t got anything."
That's my all-time favorite movie!
I assume these tests needs to be performed without breaking any bones or damaging tendon or ligaments.
I was in my early 50s when I learned I was hypermobile. From watching a "only 10% of the population can do this" youtube video. My mother always told me I was stiff because I wasn't a contortionist like her. Jokes on her I'm hypermobile and have more issues with my joints than she does. Her problems were mostly with her back. I got all the comorbidities.
Would like to know if that surgery you had on your tongue helped with any symptoms.
I think it helped a lot with range of motion in my jaw and just general neck/jaw stiffness. I don't tire chewing as much, and I'm able to clean my teeth with my tongue more thoroughly. I'm happy I did it, but it didn't fix everything of course.
@@MommingwithMigraine Glad it helped with some things anyway. Sometimes the little things are the difference in the energy you have left for that day.
@@MommingwithMigraine Would you suggest starting with a dentist or a specialist ENT (I forget what specialty you said it was because it has been forever since I watched the video) for pursuing getting ties evaluated for potential revision? Turns out I've got both a tongue tie and 2 lip ties (one top, one bottom), and I'm starting to suspect that at least the tongue tie is affecting my jaw (wisdom tooth surgery 8 years ago caused it to be stuck subluxed sideways, severely affecting my singing ability, and we only just started to be able to fix that a year ago) and other things, and might also be the root cause of me getting a lot of really deep pit cavities in my molars when I was in junior high and high school (probably compounded by the EDS as well as developing an allergy to fluoride). I never suspected I had any ties until I watched your first video on it, though, because a friend of mine had one when we were in grade school that went almost to the tip of her tongue, keeping the tip of it from being able to go out past her front teeth (I obviously knew that wasn't normal, because I and everyone else that I knew could do it), but I didn't know that having an intact frenulum at all, regardless of size, wasn't normal.
I scored a 9 my kneecaps also slide off and I have to push them back up into place. I deal with lots of stiffness and also arthritis because of it.
Oh gosh! Is that painful for your kneecaps? The arthritis sucks!! I have little rubber washcloths to open jars 😅
I got 7/9 based on this video, i lost point because i can't straight my legs over 180 degrees. I can touch the floor with straight legs but i can do it because I worked on my flexibility and i couldn't do it before I worked on my flexibility
Is it normal to be able to turn your leg fully around to shave the back of your leg? I have always done that but it freaks my partner when he sees me do it
I accidentally came across eds and beighton score... and now I am freaked because I already have a chronic illness... and I am passing almost on all counts and thought all of this was normal... and turns out it's not like tf!!?
I guess I have it only in my hands. I thought of it as just party tricks because I'm the least athletic person there is.
2:50 They are like points on golf. The lowest score is the winner.
I got 9
I only dnt get a point for touching ur hands to the floor. Cuz my back is just a stiff mess
Support
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I also have hyper mobility. This was a great video. I am also going to make a video about mine as well. Would love if you checked it out.
0:35 No, it's closer to 950 thousand MPH.
Hypermobility is autoimmune disease
Yes or no
Hypermobility belong develop autoimmune disease
Yes or no
Please answer me sir, mam
Sir mam I apologize but I am a youtuber not a doctor
You don't like having to to say high to the camera? Pretend you are greeting a good friend, because in a very true sense, that is exactly what you are doing.
Granted, you don't get instant feedback, which is probably why it feels weird.
Have you also considered if you're autistic?
I have 8/9 😂
Bro i just got an 8/9
Bro that's nuts man