I was recently (finally!) diagnosed with G-HSD because I didn’t quite pass the criteria for H-EDS. However, I have joint hypermobility in sooo many more joints than Beighton addresses, I have orthostatic hypotension, IBS, Raynaud’s, easy bruising, constant headaches, muscle pain, joint pain, subluxations, nerve pain, problems with my eyes, easily injured...autoimmune issues...the list goes on and on. My guess is I probably do have H-EDS, but I guess I’ll just have to wait and see if they ever find the gene(s) responsible. The results and “treatment” are the same anyway. I’ve been dealing with these symptoms for over 20 years. Just have to keep taking it one day at a time! ❤️
@@lilyoh5780 : So sorry; I just saw this! I was diagnosed by a Geneticist, but my physical therapist thinks I was likely diagnosed incorrectly and actually have hEDS. Treatment is the same, so it doesn’t really matter in the long run, unless, of course, certain diagnostic codes make a difference in medical coverage.
@@Lovescoffeeandtea : Treatment is really dependent on an individual’s specific symptoms. This disorder affects people in such varied ways. But, in general, it’s all about managing pain, injuries, joint instability. For me, that equals custom physical therapy that looks at the whole body, how everything interconnects, and coming up with modifiable exercises specifically for my varied needs that I can continue at home for the long run. My connective tissue issues affect everything from joints, muscle, and nerves to my digestive system, skin, and who knows what else. (I also have co-morbid health issues that can overlap symptom-wise, so knowing which thing(s) is causing which symptom(s) can be….frustrating.) For me, it’s about listening to my body and making modifications accordingly. I don’t like meds because 1) I don’t want to become reliant on them and 2) I get most of the side effects and few of the benefits, so I depend more on diet and environmental changes. But it really depends on the severity of your symptoms, too. For some people, their mobility is greatly reduced, or it can be on some days and not as much on others. Some are so severe that they are on feeding tubes, though I think that happens more with classical than hEDS…but everyone is different. Finding a medical team that you and your daughter trust, who listen and are willing to learn, is essential. I was in my late 30s when I was finally diagnosed, and that’s when ALLLLLL the varied, weird, and seemingly unconnected health issues made a lot more sense! Best wishes and good health to you and your daughter! 🙏🏻
Just to point out there are those of us who have crap docs around. Been diagnosed with BJHS(now HSD) because the doctors are still confused :(. But otherwise, his is an excellent video and thank you for taking the time.
I just got diagnosed with hEDS/HSD and disautonomia today... I would probably never have gotten diagnosed without you! I had never heard of this before you, and I had given up on getting a diagnosis and doctor's had just ended up saying it was just stress..... After seeing your videos I went to the doctor and requested to be sent to a rhumatologist.. and he said he's sure I have it and that I have disautonomia as well! I'm so happy to finally have an answer,..and be able to start treating the cause of my nausea and pain, so thank you so so much,..I thought I'd never have an answer for nearly an A4 page of symptoms!
I feel like you could be a teacher (...or maybe a doctor). I was recently diagnosed with Ehlers-Danlos Syndrome (Hypermobile) and it's crazy how much information is out there... and how much you know.
lol thank you! yeah i've done SOOOO much research and read too many studies 😂. Medicine interests me so much!! I study Environmental Earth Science! I'm either going to go into env science or maybe be a doc or a genetic counselor
Stone Johnson Vlogs I know right! I keep trying to nominate her for a Ted talk lol. I know she’d be amazing at it! This girl literally saved my life with her videos. I’m sooo grateful!
Be me: -Have G-HSD -Get chronic widespread pain & chronic fatigue when I'm 10 -Have family history of both G-HSD and hEDS (relatives who have to have their aortas splinted in their teens as they stretched to much) -Bruise easily -Lumpy, weird scarring -Stretchier than normal skin(nothing ridiculous but definitely noticable) -bad coordination -Some other symptoms just can't be bothered writing em all Every doctor and physio just says I have HSD (using what ever name was being used at the time) so when I say that people go, "oh, so ur double jointed, that doesn't cause x" Mfw the naming of the condition is so convoluted that even I struggle to understand it. Nice videos, glad to see people talking about this.
I have hEDS like HSD. I suffer with hypermobility in every joint, I have POTs, constant headaches, a heart condition and other things. My geneticist told me that i more than likely have hEDS but there is not currently a test for it where I live (i'm from england). I don't quite fit the whole criteria because I don't really suffer with my stomach (stomach pains and occasional bloating but that's it) and apparently my facial features don't fit that of someone with eds. It's a bit annoying and I know label won't really change what I suffer from, however, some people don't really take it seriously. You say hypermobility and they think "double jointed" but it's so much more than that! Your video is so informative and well done to you because it helps bring about awareness of hEDS and the seriousness off it!
@@Citrusverbena it's not necessarily heds, but eds in general. It's big eyes, thin nose and thin lips. I think that's normally with vascular type but my rheumatologist goes by that criteria for all
Those things you are talking about are more in line with Marfan’s syndrome than EDS. The stomach and digestive issues aren’t diagnostic criteria but a possible symptom of the disease. As for the testing, there is NO Genetic test anywhere for hEDS anywhere as of yet. I believe your doc was terribly misinformed. I should know, my last primary care doc (hence the reason she was dropped as my doctor!) was because she thought it only effected one side of the face and caused no pain! No! You are a moron that’s Bell’s Palsy! There are too many doctors that are woefully lacking in information about a disease that is as prevalent as this one there are at least 2,000,000 people who have it!
I think I probably have some form of HSD. I have TMJ/D, crazy flat feet and plantar fasciitis, popping and clicking noises in joints all over my body, soft skin that bruises easily (and inexplicably, I never know where they came from) and makes me look like a teenager. Plus, I’m diagnosed with CFS and fibromyalgia which I now think are symptoms of something else. I don’t think I’d quite qualify for EDS though. It’s amazing that it took 27 years of my life for some of this to start making some sense. I really hope I can see a rheumatologist soon.
If a doctor asked me to hyperextend my knee, even though it was common when I was a kid, I wouldn't do it now. When I was 10 years old I studied Aikido and I was taught how to properly use my knees and not hyperextend them as well as my elbows. Practicing martial arts probably helped build up the strength in my knees to keep them from acting all wiggly like they had been before. Hyperextending your joints damages them so, I don't even care if a doctor asked me to do it. I know I could hyper extend it and I know it's bad for it.
Sometimes people who are suffering the most, smile the brightest. Nobody ever realizes how much pain I'm in, because I'm always chipper and laughing. I tell lots of jokes and try to make other people happy. It's a coping mechanism.
I was diagnosed as a child. Went to a new doctor and he said I didn’t have it because I couldn’t hyper extend my knees even though I still pass all criteria the same as an adult.
if you don’t pass the beighton score bcus you can’t hyperextend your knees that could make sense but in any other context it doesn’t😭😭like you can have a couple joints which aren’t crazy hyper mobile and still have EDS, especially if you pass the beighton score without having hyper mobile knees
I was diagnosed with HSD from a rheumatologist. She was actually a wonderful doctor. But she told be she was not the specialist for me and honestly I am so shook by the lack of resources for people with HSD.
Thank you for making this! I have symptomatic generalized HSD but have been wondering if I might actually have EDS. You did such a good job explaining how my condition and EDS have so much overlap and it's nice to know that I'm not the only one with no idea which one they have
This video was so helpful. I'm pursuing a diagnosis because everyone in our family has generalized hypermobility, easy bruising, 1 or more dislocations (I only had one through sheer luck and caution), and so on. Felt that EDS was a bit too extreme after hearing the stories of people who dislocated their shoulders being swung as a kid, and dislocated their ankles because the jean cuffs were too tight(though I know it's a spectrum and symptoms can vary in severity). I'm still going to bring up EDS when I go to a doctor, because a doctor would of course know better than I and I tend to downplay my own symptoms even to myself. But also knowing that you can get help even if it's not necessarily as severe as EDS was a great relief. This channel is amazing, keep up the great work !!
As a person who has been confirmed with hEDS twice by separate geneticists: thank you for making this video!! I was diagnosed twice and I still didn’t quite understand the spectrum fully or why it’s all like this. I’m participating in research soon at the Carle clinic in Illinois. Thank you so much for explaining all this. I’ve been dealing with this since my early teens and it’s all so confusing lol
Hello, I came across your videos and think they are great. My 17 year old daughter was just diagnosed with hypermobility, EDS, Potts, and fibromyalgia. We are so excited about her getting diagnosed because for the last 5 years, she was told by several doctors that she was just lazy, didn't want to go to gym class, she would out grow the pain, and there was nothing wrong with her. So, now we have been told to see this doctor or that doctor. We keep getting told there is nothing we can do for pain and that she needs to keep going to PT. There are times her pain is so severe that her Dad has to carry her around the house. Its very frustrating because it seems like the doctors diagnosed her, but now, not wanting to help with pain. She misses work and school. I'm looking for some advice and direction- any info will help. Thank you!
Holli Bunz if she was diagnosed with EDS she needs to go to a Rheumatologist that knows EDS. Most treatment will be what her issues are. Joints (physical therapist for EDS) stomach problems (gastroenterologist for EDS) dizzy or fainting dysautonomia POTs cardiologists) pain (pain management Dr specializing in EDS. Hope this is helpful and hope your daughter gets the help she needs! Much love xo💜
Hiya! I’m not 25, and I’ve been diagnosed with Benign Joint Hypermobility Syndrome since I was 8 (bit of course more recently it’s been changed to a spectrum disorder). More recently I was diagnosed with Fibromyalgia. I also suffer with really severe pain, exhaustion and low mood and always have. I went to a rheumatologist who was fantastic. I use a mixture of pain medication, physio activities and supplements to help. But the rheumatologist totally got that I suffer despite looking completely normal. He gave me so much information and coping skills and lifestyle changes to implement. Honestly, what gets me through the pain is heat. Hot baths, heat packs, heat rubs etc. Only use ice when there is an injury. Unfortunately, I can’t say it get better, but you can change the way you think about it which really helped me get out of the despair of it all. I have the same issue, because I have a diagnosis and there’s no cure or definitive treatment for managing it, it can seem like you’re passed from pillar to post just trying to get help. Stick at it and definitely try and get a rheumatologist on board. All the best! Good luck ❤️❤️🙏xxx
So interesting that 20% the population has some sort of hyper mobility. It's estimated that 17% of people have MCAS. So just wonder if those are the same people!
Thank you so much for clarifying the spectrum for me, I'm on the way to finding some kind of diagnosis for my hypermobility and chronic pain and now I feel like I can go to my doctor and explain more of what I think of it. So again thank you so much!! :)
So almost six months ago one of my occupational therapist asked me if I had EDS I inquired about it and did some research then ask a doctor who sent me to an orthopedic specialist to have my hypermobility looked at who has now said that I require genetic testing for ehlers-danlos syndrome had it not been for the education that I have learned from watching your videos I probably would not have pursued it thank you so much for sharing your story and educating us all we've been looking for answers for years and tested for all sorts of things for each separate issue never finding something like this it could connect all the health issues
Thank you for making this video! I definitely understand the difference between the two better now(especially that one is not necessarily more sever than the other)! I was diagnosed with G-HSD recently and was basically told that I don't quite meet the hEDS criteria because I don't have stretchy and fragile skin. But I was also told that even if I did get diagnosed with hEDS my treatment would largely be the same. So everything you said definitely makes a lot sense!
Just diagnosed hypermobilty (didnt get told a letter) with secondary fibromyalgia had joint pain and stomach issues all my life. Now in my 30s trying to learn as much as I can as my kids have joint issues and stomach issues. This has been so so so so helpful thank you so much!!
Thank you so much for making this video! It really helped me understand what’s happening to my body and what some doctors have said. I’ve had multiple subluxations and dislocations on my shoulder, knees, elbows, fingers, etc. But i was always told “you’re just really flexible. Don’t worry about it” or “ you love acting like a freak and you live to get diagnosed with something”. The first time i saw someone talking about hEDS i felt so connected to that person because i had a lot of the same symptoms, so i googled the criteria and i pass it with flying colors. The problem is that where i live (the dominican republic, a small island in the caribbean) people are really close minded and they don’t like considering the possibility that there may be something else wrong with me that’s not just that i’m hypermobile.
I'm sorry to hear it's difficult to get the right diagnosis and treatment where you live. If it means anything, physical therapy can be helpful for many people (though I'm sure you know that), and you can do that where you are. :)
Izzy, you are such a bright young star! Keep teaching others on this disease-syndrome, whichever it is considered. I have gone my entire life wondering why I get sick so often and am in so much more pain than others my age. I even have a friend in her mid 90's now that does far better than me. No doctor has ever told me I have EDS, but after 2 biopsies back in '99-2000, the Dermopathologist said he was sure I had a collagen vascular, connective tissue dis. I've told other doctors that...but they poo-poo it. Everything in my body has prolapsed: uterus, bladder, rectum, Mitral valves, the ligaments completely gave way when I was 4.5 months pregnant and ended up in the E.R. I used to pull the skin from my elbow 4-5 inches away, and could double cross my legs and bend w/ hands flat to floor (alto never could do splits). Plus, all the subluxations..my Chiro said I need to put Elmers glue to hold you in place!, LOL Trouble is ... I'll be 65 in a few days and am SO stiff (I have R.A. too) and can no longer do the things on the EDs test. Why didn't doctors put 2 & 2 together when I asked "what's wrong?" Do I just GIVE UP? p.s. Have new Rheumy Dr. and she had me do those things when I mentioned EDS...of course now I CANT. Dr.s have also thought from Nerve Studies I have a form of ALS...which other Dr.s poo-poo that too!
I'm currently seeking a diagnosis for hEDS. It runs in my family (several relatives have it) and my hypermobility has been getting much worse and more painful over the last few years, along with other concerning symptoms. Thank you for the great info and encouraging words 💜
Izzy, thank you for your very educational video! I started trying to figure out about my hypermobility several years ago. And discovered it really is a thing. Even though I had experienced it my whole life, it was never something anyone talked to me about. I think I have generalized hsd. I have been diagnosed with mitral valve prolapse 25 years ago. Have had some pots experiences. Learned how to avoid hyperextending my knees and elbows when I was 10 years old from studying Aikido. Have almost had my knees go out of joint numerous times when I was sitting cross legged too long. TMJ from neck injury when I was 14. All I have to do to crack my neck is move my head from one side to the other, and all the vertebrae go pop pop pop pop. Currently having significant problems in my right hand. Have no health insurance. American healthcare system is sadly and woefully lacking. High anxiety all my life is another symptom related.
I have HEDs and for the majority of my life I was clumped with the common hypermobile folk, and cause it still says that on my history of having HM not HEDs even tho it's confirmed by docs I've never been taken seriously 😭
THIS was SUPER helpful. I needed a comprehensive explanation of the differences between hypermobility, Hypermobility Disorder Syndrome and Hypermobile Ehlers Danilo's Syndrome. I amd either HDS- likely hEDS or hEDS. I am DEF hypermobile as diagnosed by a rheumatologist in 2016. The new criteria as explained in another video with your cohorts was enlightening. I also had no idea that this was so rare as most of my family is the same and it's our normal. Thank you. Please keep spreading awareness and sharing education for those who can't get to formal diagnosis. 💜🦓💜
I finally saw the Genetic doc and I put the details under another one of your videos. I only met 2 out of 6 for the flexibility. However since I am 53, he said that was probably due to my aging causing stiffness offsetting my flexibility. UGH! He was a real nightmare. My other message goes into detail. Thanks Izzy and God Bless You🙏
This was really helpful, thank you. Obligatory mini-med - My joint pain started at around 5 and has spread throughout my body for the past 25 years without a diagnosis (until a sweet physio suggested that I was hypermobile, bless... I mean, still no diagnosis but I have a direction!) Point being, I've been dealing with pain without help (or often belief, gross) for so long that I have horrendous trouble with scales and diagnostic criteria. This helped give me some perspective, which is really hard to come by for me - I've been in a pain oubliette and I do not know how to quantify or be comparative about it or even other sensations. It's good of you to take on complex issues like this and provide your perspective and experience. From what I heard and saw, I'm either G-HSD or h-EDS. That's sort of neither here nor there (not expecting you to weigh in, doctor! lol), but you've given me another angle to approach it from with the stubborn, boring, actual doctors :P I have a lot of trouble understanding subluxations, I'm hoping I find a video about it on your channel :)
Oh thank god for this. I didn't pass the hEDS criteria because the rheumatologist didn't think my skin matched the criteria - i disagree - (and also, some of my previously very hypermobile joints are starting to stiffen up in my 40s). Thank you for this.
You’re absolutely beautiful. You’re very good at presenting information that’s kind of hard to understand if you have never heard of EDS. So many issues come with EDS. I hope you have the best life possible.
I have EDS, HEDS, VEDS, Fibromyalgia which the Dr said takes on MS symptoms, Pots, PTSD, Anxiety, Gastroparesis, OA, Disc Degeneration of my spine. Thank you for educating the public about eds
I just want to say thank you so much for making these videos! I actually discovered your channel randomly off of a general interest to learn. Now it is possible I have EDS so I am binging all of your videos even more to learn! Still going through the process of doctor appointments and testing is very stressful while in pain and not knowing what is going on. These videos are going to help me learn and understand more for the next appointments!
Great explanation. Thanks for clarifying. Especially that last little PS at the en. 😊 I was recently diagnosed with HSD but have severe gastrointestinal problems, anxiety disorder, migraine, sleeping disorder, pots. I have also suffered from fatigue and burnout for many years and am about to make a Neuro psychiatric evaluation.. So yes as a HSD person you can definitely have as bad symptoms as hEDS. Keep up the good work!
I appreciate this video. Have you ever spent way too much time trying to figure out normal range of motion? Ive been scouring through videos to try and figure out what normal knees look like while doing the beighton score.
Ive always had a naturally very flexible back and all my fingers and thumbs are “double jointed”. My shoulders can move around further than they should. If i reach my right arm over my shoulder and reach my left arm under to grab it i can bring them over my head without letting go. My older sister sat down on the couch and her knee dislocated because she doesn’t have a lot of muscle. My younger sister has dislocated her elbow twice.
When I was diagnosed with G-HSD my genetist said that I didn't have EDS, as of now. She told me that I probably had some form of it (hEDS or other) and that I might be diagnosed with it in the future.
The last bit was interesting. My rheumatologist and GP both believe that I'm a high candidate for hEDS and not just generalized hypermobility due to also having POTS, chronic migraines, Raynaud's, extremely slow digestion, as well as ADHD. However, both of them weren't sure if it was a good choice to be formally diagnosed with hEDS due to concerns about if pre-existing conditions stop being protected, or general question of if there is any value to a formal diagnosis if treatment for both is currently the same. I don't know how common this is but there's another aspect of why some people may have generalized hypermobility disorder in their chart even though they really have hEDS; some doctors don't see the point in getting a concrete diagnosis to differentiate between the two if they're similar enough.
Good breakdown! Obviously, no pun intended. Update from an earlier comment, thanks again for suggesting that I have Classic- like looked at as a possibility(and not just hEDS or vEDS). Naturopath and I agree that it's certainly possible. Just trying to get in to a clinical geneticist, and an orthotist, these days.
Is the Mayo Clinic able to help with any of the illnesses mentioned ? I would love to here of who is some of the Greatest GI Drs in Fl. Can anyone help ?
This was a great explanation. It is such a complex disorder, I would love to see them find the gene that causes heds. It would simplify things so much. I know for me I am still struggling to find a place that can test me to confirm if I have eds or just hsd. The only thing they confirm is hypermobile joints, but I do have a lot of the comorbid conditions too.
I'm so glad they renamed benign Hypermobility to something else because before I got diagnosed with hEDS and uninformed doctor who thought Marfans was the only type of eds, told me I have benign Hypermobility and I felt there was nothing benign about it, lol.
You explained the hypermobility issue so well. This video definitely helped me understand more as I have strongly suspected hEDS for 2 years. Thank you!!!
I was diagnosed with G-HSD, I have a lot of symptoms relating to hEDS. (dislocations/subluxations, gastrointestinal issues, POTS, soft “ “velvety” skin that scars easy, Floppy valve syndrome.) I’m 16, and don’t have any family that was diagnosed with hEDS (although my moms parents aren’t her biological parents so we have no genetic background there.)
Thank you so so much for this informative video! I am about to go to my first rheumatologist appointment and am extremely convinced that I either have HSD or hEDS and this just cleared up some confusion for me. Love your videos!
Hello they told me exercise or swimming and other sports can help with my back pain so i was just wondering if you know any good exercises that could help me cuz at the current situation i cant go swimming or do any other sports and the pain getting worse thanks.
Medicine struggles to define syndromes because of their complexity. That's why diagnosis is so difficult to obtain. You have explained all of this so well. I am learning so much about EDS from your channel! I am going to get the beighton test done soon. But Don't really know even IF my doctor has the ability to refer me to anyone who can rule our different types of EDS. So it is such a complicated situation. One step at a time though.
I went to see a Doctor today as I have several signs of hEDS (joint hypermobility, digestive issues, migraines, POTS, joint pains etc.) and the Doctor dismissed the possibility straight away. According to him I don't have joint hypermobility because my left knee doesn't hyper-extend - he took my left foot, supported my upper leg on his knee and tried to bend my lower leg upwards to see if it would bend backwards. Based on that one knee not being able to bend backwards I apparently don't have joint hypermobility at all.... even though my little fingers both bend back 90 degrees, both thumbs can touch the forearms and I can bend in various other ways (prayer position behind my back, reaching around my back with one hand and over my should with the other until I can grasp hands etc.) Some Doctors just don't know enough about the condition and seem to think that if you don't match their textbook examples then there isn't even a possibility of the condition being there. The same Doctor also told me I "can't possibly have a connective disorder as they affect the heart tissue and heart valves and your echocardiogram was clear" Not true! - some connective tissue disorders don't affect the heart at all such as Rheumatoid Arthritis.
Thank you for the information! I’m definitely hypermobile, especially in the hands. I do have issues with writing (top knuckle of fingers hyperextends) which cause me pain. I think I would still fall under asymptomatic, but it’s useful to know when exploring solutions!
The problem is Belgium/Europe is that when you have HDS, you have to pay way more for your physical therapy/ medicine, when you are diagnosed with EDS, your physical therapy sessions etc are almost free
Amazing detail and clarity, thank you! Have you thought of making a video on the connection between CSF leaks and connective tissue disorders? That would be a cool topic as there are lots of people with CSF leaks who have questions about connective tissue and probably vice versa. I've had a CSF leak for many years and just starting to explore the CT world. Happy to point you to CSF leak resources if you need. Thanks again for all your work!
Thanks so much for this! Loved this vid as always :) I do a lot of education/like helping people in support groups and facebook groups. I know a lot about EDS - hEDS and other types - because I had many EDS symptoms like atrophic scarring, skin abnormalities, stretch marks, POTS, mast cell activation syndrome, gastroparesis, SIBO, easy bruising and bleeding, etc etc. so I never really looked into Hypermobility spectrum disorders when I was getting diagnosed. I’m currently hEDS but I need genetic testing to rule out classical or classical like. Probably classical like if anything. I’ll let you know in 3 years when the geneticist can finally see me 😂 I wanted to understand more because so many people ask in groups, and it’s so important to address the full spectrum of hyper-mobility. I think it’s so sad when people look down upon or exclude people with symptomatic, systemic hyper-mobility and other symptoms as “less bad” than EDS. This video was awesome and will save my bad tendons lots of typing when I can link it in groups :)
Thank you for explaining this so incredibly well!! Been trying to figure out my chronic joint pain for years and I’m amazed no doctors have ever asked or checked my hyper mobility which I have but never thought of, realized I have other symptoms you mentioned as well so thank you, I will now try a different path of investigation with doctors.
Hallo dear. I have headaches diziness, scoliosis (since 2 ), muscular isses, knee pain and joint issues, and stomach issues. I get tired very easely but I no diagnose. I went to the Doctor because of pain on my knees 7 years ago. He said I had hiper extension. I thought that was normal, since I do that since I'm a child. I also have hipermobility in the eyes, but as I don't do it often then i can't do it that fast as in my childhood. I have só many other issues, I thought they were normal, but I think there not. But in Portugal there are few doctors that care and recognize the problem. They say it's the nervous system. They tell me I have a depression because of my vitiligo. Then don't care knowing the true. I became with sintoms after my 30's. I have light sintoms. I'm not on a wheelchare , I can walk, but I get tired very easely. I don't have stretchy skin but my breasts became very big and I look older than I am. I'm almost 47 and the skin over my eyes seems like melting faster than it should. I forget a lot about things and I can't walk when it's heat. I just can't breath and avoid the beach when it's hot. Of course this isn't everything. This is all I can remember.
Hiii! I'm from Portugal too and I agree with you... I have some of the symptoms you mentioned, severe joint pain that started about 6 years ago in my teens, and the doctors just say I don't have anything...
Hi everyone! I'm a young teenager who thinks that they have one of these conditions. I have been a contortionist for several years now and I have seemingly developed hyper mobility from it. Or maybe I'm a contortionist because I am hyper mobile. I don't know which one came first. I score a 9 on the Beighton Score. All my joints stretch past their normal range of motion, but some, specifically my elbows and knees, have caused me pain for a while now. I also constantly experience greyouts, so I basically almost pass out and my blood pressure lowers, when I stand up, which I've heard can be a symptom. They can be very severe and have been getting worse. I frequently injure myself and experience weird pains that last for a day or two. I scar very easily but don't bruise as easy, though that has been changing. I also have digestive and bladder issues, which I've heard can be an issue with HSD. I have a few other symptoms too. I think I either have HSD or hEDS. I don't have any family history though. What's prompted me to ask is that I've recently had some very weird knee pains for a month in the same area it hurts when they are hyperextended. They seem to be related to this, but I can't tell. If you could reply with some advice and opinions, that would be great. Thank you for taking the time to read this.
I'm in the process of trying to get an evaluation for EDS. My doctor did a hypermobility evaluation before sending the request and scored me 9/9 on her test. All natural, no sports (cause I never had the health to do sports, get fatigued way too easily). As part of listing symptoms I also got POTS confirmed, thanks to your videos I knew to mention those symptoms as relevant (for comorbidity) I'm also on a disability due to chronic fatigue. To get that they ran blood tests to look for deficiency, all good. Then got evaluated for ADHD, well got Autism AND ADHD, so they just blamed the fatigue on that and called it a day... I keep hearing the "But 20% has hypermobility", which makes me go in imposter syndrome. But after seeing this, yeah, no it is NOT localized! Nor asymptomatic. So if anything, I can only be one of the two bottom ones. I guess my biggest doubt is severity. I don't have sever pain and huge problems with digestion ( neither is zero though, but never bad enough that I even mentioned it to my doctor or taken anything for it. I have a very high pain tolerance, and just assumed it was supposed to be like that cause my mum said it was "normal" ( also known as, I inherited it from her and since she had it too it wasn't something different or wrong) Turns out my sister has all the same symptoms as myself, so we are now racing to get an appointment, and will bring the other so they can get a family history and see that we do have points for family also having it.
going in for my diagnosis once school is out in May. I match 70-100% of the criteria in each section except for family history because I jsut dont know. Now that i have chronic pain especially in the SI joint, knees, feet, neck, shoulders, and chronic bloating and diegestive issues caused by anything i eat, etc its time. thanks for your videos.
I’m trying to figure out if I have localized HSD but the first hand physician I went to at first thought I did and after a follow up seemed hesitant. I have a referral to see a rheumatologist, but I’m wondering if he’ll say I don’t have it either. Not trying to force a diagnosis but does anybody have any advice for how to illuminate further my symptoms to obtain a diagnosis sooner, if there is one? Thanks 💚
This was super interesting to me because I just got back from my gastro doctor and looked at my "problem list" of diagnosis sheet. It was marked generalized hypermobility of joints BUT I saw a genetic doctor in Nov 2019 and he said h-EDs so I have no idea why it didn't get added/corrected on my chart. This was really informative and validating. I have to have more surgeries soon for my gastroparesis... some of which I may be able to eat solid food again but as of today she said no more solids only puree because of how bad it is getting with both my Gastro and POTS and I am exhausted but hoping that opening the stomach to intestine opening and removing that part that opens and closes could help however they said more than likely I need a J tube so that the mic key will just STAY in my small intestine and stop flipping into my stomach... Going to call the genetic doctor to clarify but what you said really made since and I wish they would have updated my list because even my gastro doctor today said the h-ED looks like it shut down my whole digestive track. -___-
I saw my EDS specialist in early December. He assessed me with the 'Beighton Score' but he only made me do 3 of the things on the Beighton Score and said 'you're definitely hypermobile, but I don't know if you are hypermobile enough to have EDS' - I didn't say anything but I believe otherwise. I looked up the Beighton score for myself and although I am not a doctor, I believe I scored an 8. A big reason why I think it would be EDS is that I also have gastrointestinal issues, POTS, Raynaud's, chronic fatigue, easy bruising and scratching, hyperhidrosis, migraines, reflux, and as a baby, I actually had Allergic colitis. Do you think that him not fully testing me was a bit unfair? He said that he couldn't really say where I was on the spectrum, but I might have mild EDS or Benign Joint Hypermobility Syndrome. I did a bit of research, and I heard that Benign Joint Hypermobility Syndrome is where you have pain/discomfort after exercise, and you are also hypermobile. Is that true? Also, thought to mention that my Osteopath is 100% sure I have EDS. Thanks.
Yes, he 100% should have tested you on the full criteria and finished the beighton score. The criteria is much more than just the beighton score, as well. Benign joint hypermobility syndrome is an outdated term. Anyone diagnosed with it would either now be diagnosed with one of these three: Asymptomatic Generalized Joint Hypermobility, Generalized Hypermobile Spectrum Disorder, or Hypermobile EDS. Plz find a another doc to assess you!!
Thanks! He asked me a few questions too, but I don't think it was enough. He also said the only reason he diagnosed me with Benign Joint Hypermobility Syndrome was that my Rheumatologist diagnosed me with Joint Hypermobility Syndrome, but she didn't even know what EDS was and I don't think she knew much about JHS either... She also didn't test me on the full criteria, and she didn't even finish the Beighton score! I don't really trust her opinions anymore too because she said that 'JHS wasn't painful and it's no reason why I should miss school so much' eventually, it got too much and I'm now homeschooled. One of my homeschooled friends also has EDS and POTS and we went to the same rheumatologist and she also said that and diagnosed her with JHS, although she fits more into the EDS Criteria. What kind of doctor should I go to, to get tested? Also, my mum was quite happy with the appointment so I don't know what to say lol
Carefree Critters my MD only checked my elbows and knees and said those weren’t but did not check outside this and my thumbs (which on one side I can touch my forearm) and I can touch the floor with my hands and my legs straight
My geneticist bairly touched my thumbs, and were like oh those don't pass. I took my own hand and showed her I easily do. She tested the skin at my elbow and I showed her under my arm and my hand (two different places). I also stretched my calfs that are tight to support my ankles so I can touch the floor moor easily (I can always do it but I wanted it to be easier that day). Sometimes you have to be proactive. I also had a check list of the criteria ready. Thankfully she had seen my daughter earlier and was already fairly convinced we have eds in my family.
Genetic testing confirms I have arthrochalasia EDS (aEDS). Main thing with my type is hip dislocation at birth, scoliosis, low muscle tone, hypermobility, low nose bridge and lots more but they are the main ones I have. My hips are deformed, my hips knees and feet don’t line up. They say abnormal gait is an ASD feature - perhaps like me this stems from a hip deformity with EDS. My subluxations include my hips, shoulders and toes.
I'm fairly sure that I have gHSD, and my mom has hEDS-like GHSD. She had to have the entire ligament in her knee replaced, she's been diagnosed with pots and fibro. I have pretty low pain these days, not super active physically, but I've struggled with physical jobs, the pain gets worse until I can't stand or get out of bed, and they fire me for it. I've always thought I was just out of shape or not trying hard enough. I had some pots-like symptoms as a teenager, dizziness and blacking out from standing. It's gone away, but i really hope it dosn't return as I age
I’m 41 and was told by a rheumatologist that I have hypermobility syndrome and she thinks it’s the benign form. I didn’t know what it really was until I googled and watched some videos. It took me aback to all the joint problems I have as a child. I tested negative for RA, Lymes, etc. She basically said due to my hypermobility and my age my joints and ligaments cause me pain. That video where you painted the parts of your body that ached it was literally the same spots I filled out on the form. Burning, aching. Ugh. I called her back on the results and asked about EDH. I have double jointed thumbs that can bend to my wrist. Pinky’s bend past 90 degrees. Knees bend backwards. I’m pretty sure my elbows don’t. At one point I could touch the floor with my palms, but my lower back is fused. My thumbs I can pop out of joint since a kid, my ribs rob or pinch muscle or whatever that is ugh, my knees especially my right moves forward and back causing nerve pain. Sometimes I need a cane. We never did the Beighton score. I asked about all these things but she doesn’t think it’s Ehlers. She just said I have hypermobility syndrome and it was causing all my pain. I understand the needed exercises and PT I already get. But I feel like the proper steps weren’t taken. I found a Rheumatologist should deals in benign hypermobility syndrome and arthritis that’s degenerative etc. I feel like I need a second opinion. I also have velvet white skin that you can see my veins, but not really that stretchy.
I’m tired and I felt so close to what this really is. Maybe it is just Bhs, even so, I asked about follow ups and what I should do about my knee when I can’t walk. Idk. I’m suffering from post concussion syndrome and this is making it even harder. My head hurts lol. Tomorrow is a new day. Marty
Guess I should follow up. I was a 6 out of 9 on the Beighton scale and diagnosed with HEDS last week. Started aqua therapy 6 weeks ago. Doin good! Thanks again for the vids. Oh one more question. My release papers from the Specialist says I dont have classical Ed’s because my skin heals etc. So it says I have HEDS and lists basic care and physical therapy. Then one of the medical codings said Benign Joint Hypermobility Syndrome? Is that the same as HEDS, and so they don’t get mixed up with he classical form? Marty
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That was a great description of why they added and changed the official diagnosis criteria. My 1st kid got her diagnosis in 2006, all 3 of my kids have it ..as do I. Finding an EDS knowledgeable dr, like geneticists, to diagnose can be tough, it's best to ask their staff if they test and diagnose Ehler Danlos Syndrome. Since most appts take months to get in, dont waste precious time. Especially with Rhuematoligist, a few know enough about EDS, most do not. My adult son has sever sumptoms and having 2 fusions Occipital to T2, saved his life..as his cervical instability had progressed and was causing positional paralysis, he could see but not move or talk. I had to lift his head or (traction) to help his neck brace realign. He wore a hard collar until fusion. Fusion stopped the dislocation of his neck & saved his life. He still has many painful subluxations of other joints but his PT has taught him how to put them safely back in.
@@IzzyKDNA Thank you. My oldest passed from an undiagnosed, untreated blood clot, 6wks after tethered cord surgery. Local ER thought it was pneumonia. Its important first drs to be trained in EDS
My I Add, some poeple H/EDS also have a small amount Marfan syndrome disorder ( but they do not look like typical Marfen sydrome person. eg. flat feet fat, noddle around heels , slight sciersis of spine , arms long then they should have and few more.
Think you've just diagnosed me I'm going to ask my doctor about this they have just been saying for 9 years that I am hypermobile and ha e chronic pain
So I haven’t watched the video yet but I came from the other video about hEDS and the first thing you did, bending your pinkies, both of mine bend a lot, like a lot a lot. My left hand bends to about 135 degrees and my right pinkie can bend the whole way back and touch the back of my hand. When I was a baby my mum dislocated both my left elbow and shoulder and on both arms I can pop them in and out of the sockets, my elbows can couch behind my back, my thumbs touch my wrists, my elbows used to bend over 10 degrees more than they should but I stopped doing it when it started to cause pain. I can also click almost every body part. My elbows. Knees, hips, back, neck, toes, ankles, wrists, fingers and shoulders. Another thing I can do is when I bend back any of my fingers the bones pop out a lot more than any of my friends fingers do. Does anyone have any idea as to what this could class as? Also anyone know anything about shaking your eyes? Because whenever I focus on anything too hard they can shake, my vision goes blurry and other people can see them shake too.
I wish it were this simple! Daughter 16 is hypermobile with GI problems, history of POTS, dislocation of fibula, joint pain, mitral valve prolapse, numerous Marfan checkpoints, and autoimmune disorder. Son 18 has Marfanoid Habitus with joint pain, allergies, breathing problems, mitral valve prolapse, and mutation on ZNF469. Zilch came up for my daughter. I do know someone with two connective tissue disorders confirmed genetically. It's almost like getting struck by lightning. Twice.
Evie Maddox I would think she’d have hEDS by the symptoms you’ve listed. Hyper mobile type doesn’t have a gene. I’m not sure if I understood your question correctly but I read it as you were saying that it didn’t show up on a blood test but it wouldn’t.
I commented on your last video about HSD as there was some pretty big mistakes, so I’m so happy to see that you’ve made a new one to correct it! However there’s unfortunately still some misinformation here. First of all localized, peripheral, generalized etc is only used to describe where the hypermobility is located based on the beighton score. They have nothing to do with anything else. People with P-HSD can suffer the same symptoms, comorbidities, severities etc.. While you might only be a 3 on the beighton scale and therefore be diagnosed with P-HSD you can still have issues and pain in every joint in your body There’s no such thing as two types of G-HSD. Sure some people do have more systemic involvement, but someone with L-HSD can have systemic involvement too. It’s believed that a big portion of those now labeled as HSD will be assigned a type of EDS or similar CTD as new types are discovered. I’d suggest looking up the ehlers-danlos toolkit or Eds UK for some great info on HSD :)
Also forgot to add: muscular dystrophy shouldn’t cause hypermobility as it affects muscles and not ligaments and tendons. In HSD and EDS the ligaments are loose and stretchy and therefore doesn’t support the joints. That’s why our muscles try and compensate. However that’s not the case for “normal” people
Hi!! Where did you get the info that the different HSD categories probably are going to be classed as different types of EDS in the future? Just curious
I recently got diagnosed with G-HSD by a rheumatologist, he wasn't comfortable diagnosing hEDS and would rather send me to a geneticist for that (he put a referral in, will take awhile) haha but its funny because I did meet the criteria (: only time will tell, just gotta stay positive !
Could you make a video about how you manage symptoms while in college? I'm only taking two classes and I'm having trouble even keeping up with those because of the fatigue and gastrointestinal symptoms. Strangely enough the joint pain seems to be the easiest thing for me to deal with lol. You seem like you've figured out how to handle some of it. Love your videos!
It's also more common to have Pseudotumor Cerebri with EDS than the general population. PTC only affects 10 per 1,000,000 in general but with EDS it's more common.
This video is super useful in explaining to people what's going on! So I don't have an official G-HSD (like I was never referred to a rheumatologist or fully investigated) but multiple have doctors have been like 'yere its definitely that'. I was going to ask to be referred to rheumatology but I'm waiting to get some other test results (I have a POTs test and things) before I go so that I can go with as much information as possible to see if it is G-HSD or hEDS. Wish me luck!
Thanku for explaining this so well. It’s so hard to explain to family and friends the problem I have - and why I can’t do certain activities at sometimes and how it can flare up and won’t go away with just a pain medicine
I have no idea what I have. My physical therapist definitely said I'm hyper mobile. My wrists grind and make popping noises which hurts. She suggested I get surgery for it because it's a ligament issue not a muscle issue.
I have been watching a lot of your videos because they help me break down all the differences in HSD and EDS. My GP told me to study HSD/hEDS, POTS, and the like because I have some almost-clear symptoms of them. They're just not as clear because my tachy is only 145 ish (60-70 resting) and minor orthostatic hypotension! And I don't think I pass the Beighton. We're not sure though if that's because I already eat a lot of salt and do other things that mediate the symptoms. Thanks for the videos! I'm slowly getting through them haha
I score 1 on beighton but have neck instability, tethered cord syndrome, and have a lot of pain in my joints. But they don’t move in the way people with hEDS do. But I probably do have hEDS like you say!
I was pretty sure I had eds because even though I have hypermobility and skin involvement (enough to get a dx) I mostly have internal symptoms like gi issues. I just got diagnosed last week after a lifetime of mild struggles. In still getting used to having a diagnosed chronic illness which I've never had before.
Ps your video with the thumb toughing your forearm in the thumbnail came into my feed, it was the first time I realized I was hypermoble and spiraled into me getting my diagnosis, thank you.
My knees, elbows, fingers (all ten), toes (all ten), wrists, and my ankles all have joint hypermobility. My wrists, elbows and knees get pain but not regularly and they pop and crack with pain every once in while when I move it, (this probably happened maybe 2 a week).
I've got either LHSD or GHSD just because I havent had a full workup of which joints are hypermobile but they sure are all in pain! I also have some digestive issues but that might be separate. I'm honestly shocked that in all my years as a dancer I've never dislocated a joint, knock on wood. Funnily enough I also have a scoliosis. What Fun.
I have hEDS-like HSD because I’m not close with my dads side of the family but I know they have joint issues. Like my dad dislocates and relocates his knees all the time. He used to be a gymnast so he was clearly flexible. He and his mom both have scoliosis. My geneticist literally put a “?” next to that criteria and that one point is what differentiated hEDS and HSD for me. My geneticist said I could call it either and in my case there’s no difference because I don’t really know my family history. I also have POTS and MCAS
I was recently (finally!) diagnosed with G-HSD because I didn’t quite pass the criteria for H-EDS. However, I have joint hypermobility in sooo many more joints than Beighton addresses, I have orthostatic hypotension, IBS, Raynaud’s, easy bruising, constant headaches, muscle pain, joint pain, subluxations, nerve pain, problems with my eyes, easily injured...autoimmune issues...the list goes on and on. My guess is I probably do have H-EDS, but I guess I’ll just have to wait and see if they ever find the gene(s) responsible. The results and “treatment” are the same anyway. I’ve been dealing with these symptoms for over 20 years. Just have to keep taking it one day at a time! ❤️
As long as doctors take it as seriously like they should, then G-HSD diagnosis should be just as good!!
May I ask what kind of doctor diagnosed you?
What is the treatment? My daughter has this.
@@lilyoh5780 : So sorry; I just saw this! I was diagnosed by a Geneticist, but my physical therapist thinks I was likely diagnosed incorrectly and actually have hEDS. Treatment is the same, so it doesn’t really matter in the long run, unless, of course, certain diagnostic codes make a difference in medical coverage.
@@Lovescoffeeandtea : Treatment is really dependent on an individual’s specific symptoms. This disorder affects people in such varied ways. But, in general, it’s all about managing pain, injuries, joint instability. For me, that equals custom physical therapy that looks at the whole body, how everything interconnects, and coming up with modifiable exercises specifically for my varied needs that I can continue at home for the long run. My connective tissue issues affect everything from joints, muscle, and nerves to my digestive system, skin, and who knows what else. (I also have co-morbid health issues that can overlap symptom-wise, so knowing which thing(s) is causing which symptom(s) can be….frustrating.)
For me, it’s about listening to my body and making modifications accordingly. I don’t like meds because 1) I don’t want to become reliant on them and 2) I get most of the side effects and few of the benefits, so I depend more on diet and environmental changes. But it really depends on the severity of your symptoms, too. For some people, their mobility is greatly reduced, or it can be on some days and not as much on others. Some are so severe that they are on feeding tubes, though I think that happens more with classical than hEDS…but everyone is different. Finding a medical team that you and your daughter trust, who listen and are willing to learn, is essential. I was in my late 30s when I was finally diagnosed, and that’s when ALLLLLL the varied, weird, and seemingly unconnected health issues made a lot more sense! Best wishes and good health to you and your daughter! 🙏🏻
You've explained this better than most online medical and otherwise information. Thank you!
The symptoms of EDS connect everything I have ever gone through
Just to point out there are those of us who have crap docs around. Been diagnosed with BJHS(now HSD) because the doctors are still confused :(. But otherwise, his is an excellent video and thank you for taking the time.
I just got diagnosed with hEDS/HSD and disautonomia today... I would probably never have gotten diagnosed without you! I had never heard of this before you, and I had given up on getting a diagnosis and doctor's had just ended up saying it was just stress..... After seeing your videos I went to the doctor and requested to be sent to a rhumatologist.. and he said he's sure I have it and that I have disautonomia as well! I'm so happy to finally have an answer,..and be able to start treating the cause of my nausea and pain, so thank you so so much,..I thought I'd never have an answer for nearly an A4 page of symptoms!
I feel like you could be a teacher (...or maybe a doctor). I was recently diagnosed with Ehlers-Danlos Syndrome (Hypermobile) and it's crazy how much information is out there... and how much you know.
Just curious, what are you studying in college?
lol thank you! yeah i've done SOOOO much research and read too many studies 😂. Medicine interests me so much!! I study Environmental Earth Science! I'm either going to go into env science or maybe be a doc or a genetic counselor
same I was just diagnosed like a month ago
Izzy Kornblau genetic counselor and find a cure!! Lol
Stone Johnson Vlogs I know right! I keep trying to nominate her for a Ted talk lol. I know she’d be amazing at it! This girl literally saved my life with her videos. I’m sooo grateful!
You are a brilliant young woman. I guess you're on your way to being a brilliant doctor!
Be me:
-Have G-HSD
-Get chronic widespread pain & chronic fatigue when I'm 10
-Have family history of both G-HSD and hEDS (relatives who have to have their aortas splinted in their teens as they stretched to much)
-Bruise easily
-Lumpy, weird scarring
-Stretchier than normal skin(nothing ridiculous but definitely noticable)
-bad coordination
-Some other symptoms just can't be bothered writing em all
Every doctor and physio just says I have HSD (using what ever name was being used at the time) so when I say that people go, "oh, so ur double jointed, that doesn't cause x"
Mfw the naming of the condition is so convoluted that even I struggle to understand it.
Nice videos, glad to see people talking about this.
I have hEDS like HSD. I suffer with hypermobility in every joint, I have POTs, constant headaches, a heart condition and other things. My geneticist told me that i more than likely have hEDS but there is not currently a test for it where I live (i'm from england). I don't quite fit the whole criteria because I don't really suffer with my stomach (stomach pains and occasional bloating but that's it) and apparently my facial features don't fit that of someone with eds. It's a bit annoying and I know label won't really change what I suffer from, however, some people don't really take it seriously. You say hypermobility and they think "double jointed" but it's so much more than that! Your video is so informative and well done to you because it helps bring about awareness of hEDS and the seriousness off it!
I've not heard about facial features that accompany hEDS. Can you explain that? thanks
@@Citrusverbena it's not necessarily heds, but eds in general. It's big eyes, thin nose and thin lips. I think that's normally with vascular type but my rheumatologist goes by that criteria for all
I’m in England and you can be diagnosed with hEDS here, it’s just that a lot of doctors are generally uninformed.
Rebecca Williams also from England diagnosed with hEDS
Those things you are talking about are more in line with Marfan’s syndrome than EDS. The stomach and digestive issues aren’t diagnostic criteria but a possible symptom of the disease. As for the testing, there is NO Genetic test anywhere for hEDS anywhere as of yet. I believe your doc was terribly misinformed. I should know, my last primary care doc (hence the reason she was dropped as my doctor!) was because she thought it only effected one side of the face and caused no pain! No! You are a moron that’s Bell’s Palsy! There are too many doctors that are woefully lacking in information about a disease that is as prevalent as this one there are at least 2,000,000 people who have it!
Great video! They really should update the criteria to include more relevant symptoms of EDS.
I think I probably have some form of HSD. I have TMJ/D, crazy flat feet and plantar fasciitis, popping and clicking noises in joints all over my body, soft skin that bruises easily (and inexplicably, I never know where they came from) and makes me look like a teenager. Plus, I’m diagnosed with CFS and fibromyalgia which I now think are symptoms of something else. I don’t think I’d quite qualify for EDS though. It’s amazing that it took 27 years of my life for some of this to start making some sense. I really hope I can see a rheumatologist soon.
I was diagnosed today with HSD. I thought I’d be relieved but I’m extremely sad.
You're not alone the HSD diagnosis broke me, I feel like no one takes me seriously!
If a doctor asked me to hyperextend my knee, even though it was common when I was a kid, I wouldn't do it now. When I was 10 years old I studied Aikido and I was taught how to properly use my knees and not hyperextend them as well as my elbows. Practicing martial arts probably helped build up the strength in my knees to keep them from acting all wiggly like they had been before. Hyperextending your joints damages them so, I don't even care if a doctor asked me to do it. I know I could hyper extend it and I know it's bad for it.
@@therealdeal3672 omg I used to do aikido too! Every thing is hypermobile for me tho 😂
@@therealdeal3672 Same! Not aikido in my case but I remember people telling me I shouldn’t overextert my joints 🙃
I love how you still smile despite everyhing you are going through!😀
Thank you! It brings me joy to educate people on this disorder. I wish I had seen a video like this 10 years ago. :)
@@IzzyKDNA Yes, very necesary to educate people about all medical topics and about disability, etc.
Have an awesome day!
I have hEDS, and sometimes people think I'm smiling when I'm actually wincing in pain. :)
@@Dulcimerist I know what you mean! :) i Have kidney insuficiency. Have an awesome day!
Sometimes people who are suffering the most, smile the brightest. Nobody ever realizes how much pain I'm in, because I'm always chipper and laughing. I tell lots of jokes and try to make other people happy. It's a coping mechanism.
I was diagnosed as a child. Went to a new doctor and he said I didn’t have it because I couldn’t hyper extend my knees even though I still pass all criteria the same as an adult.
could it have changed because of the change in criteria?
if you don’t pass the beighton score bcus you can’t hyperextend your knees that could make sense but in any other context it doesn’t😭😭like you can have a couple joints which aren’t crazy hyper mobile and still have EDS, especially if you pass the beighton score without having hyper mobile knees
I was diagnosed with HSD from a rheumatologist. She was actually a wonderful doctor. But she told be she was not the specialist for me and honestly I am so shook by the lack of resources for people with HSD.
Thank you for making this! I have symptomatic generalized HSD but have been wondering if I might actually have EDS. You did such a good job explaining how my condition and EDS have so much overlap and it's nice to know that I'm not the only one with no idea which one they have
This video was so helpful. I'm pursuing a diagnosis because everyone in our family has generalized hypermobility, easy bruising, 1 or more dislocations (I only had one through sheer luck and caution), and so on. Felt that EDS was a bit too extreme after hearing the stories of people who dislocated their shoulders being swung as a kid, and dislocated their ankles because the jean cuffs were too tight(though I know it's a spectrum and symptoms can vary in severity). I'm still going to bring up EDS when I go to a doctor, because a doctor would of course know better than I and I tend to downplay my own symptoms even to myself. But also knowing that you can get help even if it's not necessarily as severe as EDS was a great relief. This channel is amazing, keep up the great work !!
As a person who has been confirmed with hEDS twice by separate geneticists: thank you for making this video!! I was diagnosed twice and I still didn’t quite understand the spectrum fully or why it’s all like this. I’m participating in research soon at the Carle clinic in Illinois. Thank you so much for explaining all this. I’ve been dealing with this since my early teens and it’s all so confusing lol
Hello, I came across your videos and think they are great. My 17 year old daughter was just diagnosed with hypermobility, EDS, Potts, and fibromyalgia. We are so excited about her getting diagnosed because for the last 5 years, she was told by several doctors that she was just lazy, didn't want to go to gym class, she would out grow the pain, and there was nothing wrong with her. So, now we have been told to see this doctor or that doctor. We keep getting told there is nothing we can do for pain and that she needs to keep going to PT. There are times her pain is so severe that her Dad has to carry her around the house. Its very frustrating because it seems like the doctors diagnosed her, but now, not wanting to help with pain. She misses work and school. I'm looking for some advice and direction- any info will help. Thank you!
Holli Bunz if she was diagnosed with EDS she needs to go to a Rheumatologist that knows EDS. Most treatment will be what her issues are. Joints (physical therapist for EDS) stomach problems (gastroenterologist for EDS) dizzy or fainting dysautonomia POTs cardiologists) pain (pain management Dr specializing in EDS. Hope this is helpful and hope your daughter gets the help she needs! Much love xo💜
Hiya! I’m not 25, and I’ve been diagnosed with Benign Joint Hypermobility Syndrome since I was 8 (bit of course more recently it’s been changed to a spectrum disorder). More recently I was diagnosed with Fibromyalgia. I also suffer with really severe pain, exhaustion and low mood and always have.
I went to a rheumatologist who was fantastic. I use a mixture of pain medication, physio activities and supplements to help. But the rheumatologist totally got that I suffer despite looking completely normal. He gave me so much information and coping skills and lifestyle changes to implement.
Honestly, what gets me through the pain is heat. Hot baths, heat packs, heat rubs etc. Only use ice when there is an injury. Unfortunately, I can’t say it get better, but you can change the way you think about it which really helped me get out of the despair of it all.
I have the same issue, because I have a diagnosis and there’s no cure or definitive treatment for managing it, it can seem like you’re passed from pillar to post just trying to get help. Stick at it and definitely try and get a rheumatologist on board. All the best! Good luck ❤️❤️🙏xxx
Izzy, it is such a pleasure to listen to your clear, vulnerable didactic explanations. You have a bright future as a compassionate advocate .
So interesting that 20% the population has some sort of hyper mobility. It's estimated that 17% of people have MCAS. So just wonder if those are the same people!
Thank you for being so generous with your knowledge. Truly. I wish our medical system was half as clear on anything, ever.
❤️🧡💛
Thank you so much for clarifying the spectrum for me, I'm on the way to finding some kind of diagnosis for my hypermobility and chronic pain and now I feel like I can go to my doctor and explain more of what I think of it. So again thank you so much!! :)
So almost six months ago one of my occupational therapist asked me if I had EDS I inquired about it and did some research then ask a doctor who sent me to an orthopedic specialist to have my hypermobility looked at who has now said that I require genetic testing for ehlers-danlos syndrome had it not been for the education that I have learned from watching your videos I probably would not have pursued it thank you so much for sharing your story and educating us all we've been looking for answers for years and tested for all sorts of things for each separate issue never finding something like this it could connect all the health issues
I'm so glad to hear this!!!
Thank you for making this video! I definitely understand the difference between the two better now(especially that one is not necessarily more sever than the other)! I was diagnosed with G-HSD recently and was basically told that I don't quite meet the hEDS criteria because I don't have stretchy and fragile skin. But I was also told that even if I did get diagnosed with hEDS my treatment would largely be the same. So everything you said definitely makes a lot sense!
Just diagnosed hypermobilty (didnt get told a letter) with secondary fibromyalgia had joint pain and stomach issues all my life. Now in my 30s trying to learn as much as I can as my kids have joint issues and stomach issues. This has been so so so so helpful thank you so much!!
Thank you so much for making this video! It really helped me understand what’s happening to my body and what some doctors have said. I’ve had multiple subluxations and dislocations on my shoulder, knees, elbows, fingers, etc. But i was always told “you’re just really flexible. Don’t worry about it” or “ you love acting like a freak and you live to get diagnosed with something”. The first time i saw someone talking about hEDS i felt so connected to that person because i had a lot of the same symptoms, so i googled the criteria and i pass it with flying colors. The problem is that where i live (the dominican republic, a small island in the caribbean) people are really close minded and they don’t like considering the possibility that there may be something else wrong with me that’s not just that i’m hypermobile.
I'm sorry to hear it's difficult to get the right diagnosis and treatment where you live. If it means anything, physical therapy can be helpful for many people (though I'm sure you know that), and you can do that where you are. :)
Izzy, you are such a bright young star! Keep teaching others on this disease-syndrome, whichever it is considered. I have gone my entire life wondering why I get sick so often and am in so much more pain than others my age. I even have a friend in her mid 90's now that does far better than me. No doctor has ever told me I have EDS, but after 2 biopsies back in '99-2000, the Dermopathologist said he was sure I had a collagen vascular, connective tissue dis. I've told other doctors that...but they poo-poo it. Everything in my body has prolapsed: uterus, bladder, rectum, Mitral valves, the ligaments completely gave way when I was 4.5 months pregnant and ended up in the E.R. I used to pull the skin from my elbow 4-5 inches away, and could double cross my legs and bend w/ hands flat to floor (alto never could do splits). Plus, all the subluxations..my Chiro said I need to put Elmers glue to hold you in place!, LOL Trouble is ... I'll be 65 in a few days and am SO stiff (I have R.A. too) and can no longer do the things on the EDs test. Why didn't doctors put 2 & 2 together when I asked "what's wrong?" Do I just GIVE UP? p.s. Have new Rheumy Dr. and she had me do those things when I mentioned EDS...of course now I CANT. Dr.s have also thought from Nerve Studies I have a form of ALS...which other Dr.s poo-poo that too!
I'm currently seeking a diagnosis for hEDS. It runs in my family (several relatives have it) and my hypermobility has been getting much worse and more painful over the last few years, along with other concerning symptoms. Thank you for the great info and encouraging words 💜
Izzy, thank you for your very educational video! I started trying to figure out about my hypermobility several years ago. And discovered it really is a thing. Even though I had experienced it my whole life, it was never something anyone talked to me about.
I think I have generalized hsd. I have been diagnosed with mitral valve prolapse 25 years ago. Have had some pots experiences. Learned how to avoid hyperextending my knees and elbows when I was 10 years old from studying Aikido. Have almost had my knees go out of joint numerous times when I was sitting cross legged too long. TMJ from neck injury when I was 14. All I have to do to crack my neck is move my head from one side to the other, and all the vertebrae go pop pop pop pop. Currently having significant problems in my right hand. Have no health insurance. American healthcare system is sadly and woefully lacking. High anxiety all my life is another symptom related.
I have HEDs and for the majority of my life I was clumped with the common hypermobile folk, and cause it still says that on my history of having HM not HEDs even tho it's confirmed by docs I've never been taken seriously 😭
THIS was SUPER helpful. I needed a comprehensive explanation of the differences between hypermobility, Hypermobility Disorder Syndrome and Hypermobile Ehlers Danilo's Syndrome. I amd either HDS- likely hEDS or hEDS. I am DEF hypermobile as diagnosed by a rheumatologist in 2016. The new criteria as explained in another video with your cohorts was enlightening. I also had no idea that this was so rare as most of my family is the same and it's our normal. Thank you. Please keep spreading awareness and sharing education for those who can't get to formal diagnosis. 💜🦓💜
I finally saw the Genetic doc and I put the details under another one of your videos. I only met 2 out of 6 for the flexibility. However since I am 53, he said that was probably due to my aging causing stiffness offsetting my flexibility. UGH! He was a real nightmare. My other message goes into detail. Thanks Izzy and God Bless You🙏
Diagnosed EDS 56yo.59 now,so I have : stiff joints
This was really helpful, thank you. Obligatory mini-med - My joint pain started at around 5 and has spread throughout my body for the past 25 years without a diagnosis (until a sweet physio suggested that I was hypermobile, bless... I mean, still no diagnosis but I have a direction!) Point being, I've been dealing with pain without help (or often belief, gross) for so long that I have horrendous trouble with scales and diagnostic criteria. This helped give me some perspective, which is really hard to come by for me - I've been in a pain oubliette and I do not know how to quantify or be comparative about it or even other sensations. It's good of you to take on complex issues like this and provide your perspective and experience. From what I heard and saw, I'm either G-HSD or h-EDS. That's sort of neither here nor there (not expecting you to weigh in, doctor! lol), but you've given me another angle to approach it from with the stubborn, boring, actual doctors :P I have a lot of trouble understanding subluxations, I'm hoping I find a video about it on your channel :)
Oh thank god for this. I didn't pass the hEDS criteria because the rheumatologist didn't think my skin matched the criteria - i disagree - (and also, some of my previously very hypermobile joints are starting to stiffen up in my 40s). Thank you for this.
You’re absolutely beautiful. You’re very good at presenting information that’s kind of hard to understand if you have never heard of EDS. So many issues come with EDS. I hope you have the best life possible.
Thanks so much ❤️
I have EDS, HEDS, VEDS, Fibromyalgia which the Dr said takes on MS symptoms, Pots, PTSD, Anxiety, Gastroparesis, OA, Disc Degeneration of my spine. Thank you for educating the public about eds
I just want to say thank you so much for making these videos! I actually discovered your channel randomly off of a general interest to learn. Now it is possible I have EDS so I am binging all of your videos even more to learn! Still going through the process of doctor appointments and testing is very stressful while in pain and not knowing what is going on. These videos are going to help me learn and understand more for the next appointments!
Great explanation. Thanks for clarifying. Especially that last little PS at the en. 😊
I was recently diagnosed with HSD but have severe gastrointestinal problems, anxiety disorder, migraine, sleeping disorder, pots. I have also suffered from fatigue and burnout for many years and am about to make a Neuro psychiatric evaluation.. So yes as a HSD person you can definitely have as bad symptoms as hEDS.
Keep up the good work!
I have hEDS like HSD (G-HSD) as you described it. I’m glad you’re talking about it because people don’t take me so seriously as someone with EDS.
This feels like such a validating explanation for me 🥺
I always thought I was just hypermobile but you helped me realize that I have hEDS,thank you!❣
that you may* have eds
You can't diagnose yourself through a RUclips video.
I appreciate this video. Have you ever spent way too much time trying to figure out normal range of motion? Ive been scouring through videos to try and figure out what normal knees look like while doing the beighton score.
yes totally I have tried to figure out normal ROM. sometimes i ask my physical therapist, since they know!
This finally cleared this topic up after over a year of research so thank you!! You do such great content for such underrepresented experiences!
Ive always had a naturally very flexible back and all my fingers and thumbs are “double jointed”. My shoulders can move around further than they should. If i reach my right arm over my shoulder and reach my left arm under to grab it i can bring them over my head without letting go. My older sister sat down on the couch and her knee dislocated because she doesn’t have a lot of muscle. My younger sister has dislocated her elbow twice.
When I was diagnosed with G-HSD my genetist said that I didn't have EDS, as of now. She told me that I probably had some form of it (hEDS or other) and that I might be diagnosed with it in the future.
The last bit was interesting. My rheumatologist and GP both believe that I'm a high candidate for hEDS and not just generalized hypermobility due to also having POTS, chronic migraines, Raynaud's, extremely slow digestion, as well as ADHD. However, both of them weren't sure if it was a good choice to be formally diagnosed with hEDS due to concerns about if pre-existing conditions stop being protected, or general question of if there is any value to a formal diagnosis if treatment for both is currently the same. I don't know how common this is but there's another aspect of why some people may have generalized hypermobility disorder in their chart even though they really have hEDS; some doctors don't see the point in getting a concrete diagnosis to differentiate between the two if they're similar enough.
Good breakdown!
Obviously, no pun intended.
Update from an earlier comment, thanks again for suggesting that I have Classic- like looked at as a possibility(and not just hEDS or vEDS). Naturopath and I agree that it's certainly possible. Just trying to get in to a clinical geneticist, and an orthotist, these days.
Is the Mayo Clinic able to help with any of the illnesses mentioned ? I would love to here of who is some of the Greatest GI Drs in Fl. Can anyone help ?
This! Oh my word thank you.. HEDS diagnosed and learning about it ... Odd seeing as how after all along have adapted as well as possible
This was a great explanation. It is such a complex disorder, I would love to see them find the gene that causes heds. It would simplify things so much. I know for me I am still struggling to find a place that can test me to confirm if I have eds or just hsd. The only thing they confirm is hypermobile joints, but I do have a lot of the comorbid conditions too.
Thank you for your commitment to correct information sharing. I feel like I might cry from relief to have found your channel.
I'm so glad they renamed benign Hypermobility to something else because before I got diagnosed with hEDS and uninformed doctor who thought Marfans was the only type of eds, told me I have benign Hypermobility and I felt there was nothing benign about it, lol.
You explained the hypermobility issue so well. This video definitely helped me understand more as I have strongly suspected hEDS for 2 years. Thank you!!!
Thanks so much! I'm glad it could help you understand more
I was diagnosed with G-HSD, I have a lot of symptoms relating to hEDS. (dislocations/subluxations, gastrointestinal issues, POTS, soft “ “velvety” skin that scars easy, Floppy valve syndrome.) I’m 16, and don’t have any family that was diagnosed with hEDS (although my moms parents aren’t her biological parents so we have no genetic background there.)
Thank you so so much for this informative video! I am about to go to my first rheumatologist appointment and am extremely convinced that I either have HSD or hEDS and this just cleared up some confusion for me. Love your videos!
I'm glad it could make it clear! good luck at your appt!
Hello they told me exercise or swimming and other sports can help with my back pain so i was just wondering if you know any good exercises that could help me cuz at the current situation i cant go swimming or do any other sports and the pain getting worse
thanks.
I get the feeling that the difference between HSD and hEDS is almost entirely political.
Heds has lots more than hypermobility
I think it's HSD only has musckoskeletal issues, while h-eds has a lot more issues. But there is a blurred line there
Medicine struggles to define syndromes because of their complexity. That's why diagnosis is so difficult to obtain.
You have explained all of this so well. I am learning so much about EDS from your channel! I am going to get the beighton test done soon. But Don't really know even IF my doctor has the ability to refer me to anyone who can rule our different types of EDS. So it is such a complicated situation. One step at a time though.
I went to see a Doctor today as I have several signs of hEDS (joint hypermobility, digestive issues, migraines, POTS, joint pains etc.) and the Doctor dismissed the possibility straight away. According to him I don't have joint hypermobility because my left knee doesn't hyper-extend - he took my left foot, supported my upper leg on his knee and tried to bend my lower leg upwards to see if it would bend backwards. Based on that one knee not being able to bend backwards I apparently don't have joint hypermobility at all.... even though my little fingers both bend back 90 degrees, both thumbs can touch the forearms and I can bend in various other ways (prayer position behind my back, reaching around my back with one hand and over my should with the other until I can grasp hands etc.) Some Doctors just don't know enough about the condition and seem to think that if you don't match their textbook examples then there isn't even a possibility of the condition being there. The same Doctor also told me I "can't possibly have a connective disorder as they affect the heart tissue and heart valves and your echocardiogram was clear" Not true! - some connective tissue disorders don't affect the heart at all such as Rheumatoid Arthritis.
Best video/info on EDS I've found! Still a bit confused, but you give me a lot more concrete things to think about.
Thank you for the information! I’m definitely hypermobile, especially in the hands. I do have issues with writing (top knuckle of fingers hyperextends) which cause me pain. I think I would still fall under asymptomatic, but it’s useful to know when exploring solutions!
The problem is Belgium/Europe is that when you have HDS, you have to pay way more for your physical therapy/ medicine, when you are diagnosed with EDS, your physical therapy sessions etc are almost free
Amazing detail and clarity, thank you! Have you thought of making a video on the connection between CSF leaks and connective tissue disorders? That would be a cool topic as there are lots of people with CSF leaks who have questions about connective tissue and probably vice versa. I've had a CSF leak for many years and just starting to explore the CT world. Happy to point you to CSF leak resources if you need. Thanks again for all your work!
Thanks so much for this! Loved this vid as always :) I do a lot of education/like helping people in support groups and facebook groups. I know a lot about EDS - hEDS and other types - because I had many EDS symptoms like atrophic scarring, skin abnormalities, stretch marks, POTS, mast cell activation syndrome, gastroparesis, SIBO, easy bruising and bleeding, etc etc. so I never really looked into Hypermobility spectrum disorders when I was getting diagnosed. I’m currently hEDS but I need genetic testing to rule out classical or classical like. Probably classical like if anything. I’ll let you know in 3 years when the geneticist can finally see me 😂
I wanted to understand more because so many people ask in groups, and it’s so important to address the full spectrum of hyper-mobility. I think it’s so sad when people look down upon or exclude people with symptomatic, systemic hyper-mobility and other symptoms as “less bad” than EDS. This video was awesome and will save my bad tendons lots of typing when I can link it in groups :)
SAME IM ON A 2.5 year waiting list!!!!!!!!
Izzy Kornblau it’s crazy like seriously! They don’t even need to really SEE us! Just get our genes tested geeez! An expert already diagnosed me 😪
These videos are packed with easily digestible information. Thank you so much for these videos!
Thank you for explaining this so incredibly well!! Been trying to figure out my chronic joint pain for years and I’m amazed no doctors have ever asked or checked my hyper mobility which I have but never thought of, realized I have other symptoms you mentioned as well so thank you, I will now try a different path of investigation with doctors.
Hallo dear. I have headaches diziness, scoliosis (since 2 ), muscular isses, knee pain and joint issues, and stomach issues. I get tired very easely but I no diagnose. I went to the Doctor because of pain on my knees 7 years ago. He said I had hiper extension. I thought that was normal, since I do that since I'm a child. I also have hipermobility in the eyes, but as I don't do it often then i can't do it that fast as in my childhood. I have só many other issues, I thought they were normal, but I think there not. But in Portugal there are few doctors that care and recognize the problem. They say it's the nervous system. They tell me I have a depression because of my vitiligo. Then don't care knowing the true.
I became with sintoms after my 30's. I have light sintoms. I'm not on a wheelchare , I can walk, but I get tired very easely. I don't have stretchy skin but my breasts became very big and I look older than I am. I'm almost 47 and the skin over my eyes seems like melting faster than it should. I forget a lot about things and I can't walk when it's heat. I just can't breath and avoid the beach when it's hot. Of course this isn't everything. This is all I can remember.
Hiii! I'm from Portugal too and I agree with you... I have some of the symptoms you mentioned, severe joint pain that started about 6 years ago in my teens, and the doctors just say I don't have anything...
Hi everyone! I'm a young teenager who thinks that they have one of these conditions. I have been a contortionist for several years now and I have seemingly developed hyper mobility from it. Or maybe I'm a contortionist because I am hyper mobile. I don't know which one came first. I score a 9 on the Beighton Score. All my joints stretch past their normal range of motion, but some, specifically my elbows and knees, have caused me pain for a while now. I also constantly experience greyouts, so I basically almost pass out and my blood pressure lowers, when I stand up, which I've heard can be a symptom. They can be very severe and have been getting worse. I frequently injure myself and experience weird pains that last for a day or two. I scar very easily but don't bruise as easy, though that has been changing. I also have digestive and bladder issues, which I've heard can be an issue with HSD. I have a few other symptoms too. I think I either have HSD or hEDS. I don't have any family history though. What's prompted me to ask is that I've recently had some very weird knee pains for a month in the same area it hurts when they are hyperextended. They seem to be related to this, but I can't tell. If you could reply with some advice and opinions, that would be great. Thank you for taking the time to read this.
I'm in the process of trying to get an evaluation for EDS. My doctor did a hypermobility evaluation before sending the request and scored me 9/9 on her test. All natural, no sports (cause I never had the health to do sports, get fatigued way too easily). As part of listing symptoms I also got POTS confirmed, thanks to your videos I knew to mention those symptoms as relevant (for comorbidity)
I'm also on a disability due to chronic fatigue. To get that they ran blood tests to look for deficiency, all good. Then got evaluated for ADHD, well got Autism AND ADHD, so they just blamed the fatigue on that and called it a day...
I keep hearing the "But 20% has hypermobility", which makes me go in imposter syndrome. But after seeing this, yeah, no it is NOT localized! Nor asymptomatic. So if anything, I can only be one of the two bottom ones. I guess my biggest doubt is severity. I don't have sever pain and huge problems with digestion ( neither is zero though, but never bad enough that I even mentioned it to my doctor or taken anything for it. I have a very high pain tolerance, and just assumed it was supposed to be like that cause my mum said it was "normal" ( also known as, I inherited it from her and since she had it too it wasn't something different or wrong)
Turns out my sister has all the same symptoms as myself, so we are now racing to get an appointment, and will bring the other so they can get a family history and see that we do have points for family also having it.
going in for my diagnosis once school is out in May. I match 70-100% of the criteria in each section except for family history because I jsut dont know. Now that i have chronic pain especially in the SI joint, knees, feet, neck, shoulders, and chronic bloating and diegestive issues caused by anything i eat, etc its time. thanks for your videos.
I’m trying to figure out if I have localized HSD but the first hand physician I went to at first thought I did and after a follow up seemed hesitant. I have a referral to see a rheumatologist, but I’m wondering if he’ll say I don’t have it either. Not trying to force a diagnosis but does anybody have any advice for how to illuminate further my symptoms to obtain a diagnosis sooner, if there is one?
Thanks 💚
This was super interesting to me because I just got back from my gastro doctor and looked at my "problem list" of diagnosis sheet. It was marked generalized hypermobility of joints BUT I saw a genetic doctor in Nov 2019 and he said h-EDs so I have no idea why it didn't get added/corrected on my chart. This was really informative and validating. I have to have more surgeries soon for my gastroparesis... some of which I may be able to eat solid food again but as of today she said no more solids only puree because of how bad it is getting with both my Gastro and POTS and I am exhausted but hoping that opening the stomach to intestine opening and removing that part that opens and closes could help however they said more than likely I need a J tube so that the mic key will just STAY in my small intestine and stop flipping into my stomach...
Going to call the genetic doctor to clarify but what you said really made since and I wish they would have updated my list because even my gastro doctor today said the h-ED looks like it shut down my whole digestive track. -___-
I have a join pain and crackling sounds comes form my joints.O have a 3 -4 Symptoms of joint hypermobility.I am not sure .....
I saw my EDS specialist in early December. He assessed me with the 'Beighton Score' but he only made me do 3 of the things on the Beighton Score and said 'you're definitely hypermobile, but I don't know if you are hypermobile enough to have EDS' - I didn't say anything but I believe otherwise. I looked up the Beighton score for myself and although I am not a doctor, I believe I scored an 8. A big reason why I think it would be EDS is that I also have gastrointestinal issues, POTS, Raynaud's, chronic fatigue, easy bruising and scratching, hyperhidrosis, migraines, reflux, and as a baby, I actually had Allergic colitis. Do you think that him not fully testing me was a bit unfair? He said that he couldn't really say where I was on the spectrum, but I might have mild EDS or Benign Joint Hypermobility Syndrome. I did a bit of research, and I heard that Benign Joint Hypermobility Syndrome is where you have pain/discomfort after exercise, and you are also hypermobile. Is that true? Also, thought to mention that my Osteopath is 100% sure I have EDS. Thanks.
Yes, he 100% should have tested you on the full criteria and finished the beighton score. The criteria is much more than just the beighton score, as well. Benign joint hypermobility syndrome is an outdated term. Anyone diagnosed with it would either now be diagnosed with one of these three: Asymptomatic Generalized Joint Hypermobility, Generalized Hypermobile Spectrum Disorder, or Hypermobile EDS. Plz find a another doc to assess you!!
Thanks! He asked me a few questions too, but I don't think it was enough. He also said the only reason he diagnosed me with Benign Joint Hypermobility Syndrome was that my Rheumatologist diagnosed me with Joint Hypermobility Syndrome, but she didn't even know what EDS was and I don't think she knew much about JHS either... She also didn't test me on the full criteria, and she didn't even finish the Beighton score! I don't really trust her opinions anymore too because she said that 'JHS wasn't painful and it's no reason why I should miss school so much' eventually, it got too much and I'm now homeschooled. One of my homeschooled friends also has EDS and POTS and we went to the same rheumatologist and she also said that and diagnosed her with JHS, although she fits more into the EDS Criteria. What kind of doctor should I go to, to get tested? Also, my mum was quite happy with the appointment so I don't know what to say lol
Carefree Critters my MD only checked my elbows and knees and said those weren’t but did not check outside this and my thumbs (which on one side I can touch my forearm) and I can touch the floor with my hands and my legs straight
Glad I'm not the only one!
My geneticist bairly touched my thumbs, and were like oh those don't pass. I took my own hand and showed her I easily do. She tested the skin at my elbow and I showed her under my arm and my hand (two different places). I also stretched my calfs that are tight to support my ankles so I can touch the floor moor easily (I can always do it but I wanted it to be easier that day). Sometimes you have to be proactive. I also had a check list of the criteria ready. Thankfully she had seen my daughter earlier and was already fairly convinced we have eds in my family.
Genetic testing confirms I have arthrochalasia EDS (aEDS). Main thing with my type is hip dislocation at birth, scoliosis, low muscle tone, hypermobility, low nose bridge and lots more but they are the main ones I have. My hips are deformed, my hips knees and feet don’t line up. They say abnormal gait is an ASD feature - perhaps like me this stems from a hip deformity with EDS. My subluxations include my hips, shoulders and toes.
I'm fairly sure that I have gHSD, and my mom has hEDS-like GHSD. She had to have the entire ligament in her knee replaced, she's been diagnosed with pots and fibro.
I have pretty low pain these days, not super active physically, but I've struggled with physical jobs, the pain gets worse until I can't stand or get out of bed, and they fire me for it. I've always thought I was just out of shape or not trying hard enough.
I had some pots-like symptoms as a teenager, dizziness and blacking out from standing. It's gone away, but i really hope it dosn't return as I age
I’m 41 and was told by a rheumatologist that I have hypermobility syndrome and she thinks it’s the benign form. I didn’t know what it really was until I googled and watched some videos. It took me aback to all the joint problems I have as a child. I tested negative for RA, Lymes, etc. She basically said due to my hypermobility and my age my joints and ligaments cause me pain. That video where you painted the parts of your body that ached it was literally the same spots I filled out on the form. Burning, aching. Ugh. I called her back on the results and asked about EDH. I have double jointed thumbs that can bend to my wrist. Pinky’s bend past 90 degrees. Knees bend backwards. I’m pretty sure my elbows don’t. At one point I could touch the floor with my palms, but my lower back is fused. My thumbs I can pop out of joint since a kid, my ribs rob or pinch muscle or whatever that is ugh, my knees especially my right moves forward and back causing nerve pain. Sometimes I need a cane. We never did the Beighton score. I asked about all these things but she doesn’t think it’s Ehlers. She just said I have hypermobility syndrome and it was causing all my pain. I understand the needed exercises and PT I already get. But I feel like the proper steps weren’t taken. I found a Rheumatologist should deals in benign hypermobility syndrome and arthritis that’s degenerative etc. I feel like I need a second opinion. I also have velvet white skin that you can see my veins, but not really that stretchy.
I’m tired and I felt so close to what this really is. Maybe it is just Bhs, even so, I asked about follow ups and what I should do about my knee when I can’t walk. Idk. I’m suffering from post concussion syndrome and this is making it even harder. My head hurts lol. Tomorrow is a new day.
Marty
Guess I should follow up. I was a 6 out of 9 on the Beighton scale and diagnosed with HEDS last week. Started aqua therapy 6 weeks ago. Doin good! Thanks again for the vids.
Oh one more question. My release papers from the Specialist says I dont have classical Ed’s because my skin heals etc. So it says I have HEDS and lists basic care and physical therapy. Then one of the medical codings said Benign Joint Hypermobility Syndrome? Is that the same as HEDS, and so they don’t get mixed up with he classical form? Marty
Wow well done ty!
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That was a great description of why they added and changed the official diagnosis criteria. My 1st kid got her diagnosis in 2006, all 3 of my kids have it ..as do I. Finding an EDS knowledgeable dr, like geneticists, to diagnose can be tough, it's best to ask their staff if they test and diagnose Ehler Danlos Syndrome. Since most appts take months to get in, dont waste precious time. Especially with Rhuematoligist, a few know enough about EDS, most do not. My adult son has sever sumptoms and having 2 fusions Occipital to T2, saved his life..as his cervical instability had progressed and was causing positional paralysis, he could see but not move or talk. I had to lift his head or (traction) to help his neck brace realign. He wore a hard collar until fusion. Fusion stopped the dislocation of his neck & saved his life. He still has many painful subluxations of other joints but his PT has taught him how to put them safely back in.
Thank you. Wishing you and your kids the best of luck with your treatments and dealing with EDS!
@@IzzyKDNA Thank you. My oldest passed from an undiagnosed, untreated blood clot, 6wks after tethered cord surgery. Local ER thought it was pneumonia. Its important first drs to be trained in EDS
My I Add, some poeple H/EDS also have a small amount Marfan syndrome disorder ( but they do not look like typical Marfen sydrome person. eg. flat feet fat, noddle around heels , slight sciersis of spine , arms long then they should have and few more.
Think you've just diagnosed me I'm going to ask my doctor about this they have just been saying for 9 years that I am hypermobile and ha e chronic pain
So I haven’t watched the video yet but I came from the other video about hEDS and the first thing you did, bending your pinkies, both of mine bend a lot, like a lot a lot. My left hand bends to about 135 degrees and my right pinkie can bend the whole way back and touch the back of my hand.
When I was a baby my mum dislocated both my left elbow and shoulder and on both arms I can pop them in and out of the sockets, my elbows can couch behind my back, my thumbs touch my wrists, my elbows used to bend over 10 degrees more than they should but I stopped doing it when it started to cause pain. I can also click almost every body part. My elbows. Knees, hips, back, neck, toes, ankles, wrists, fingers and shoulders. Another thing I can do is when I bend back any of my fingers the bones pop out a lot more than any of my friends fingers do.
Does anyone have any idea as to what this could class as?
Also anyone know anything about shaking your eyes? Because whenever I focus on anything too hard they can shake, my vision goes blurry and other people can see them shake too.
I wish it were this simple! Daughter 16 is hypermobile with GI problems, history of POTS, dislocation of fibula, joint pain, mitral valve prolapse, numerous Marfan checkpoints, and autoimmune disorder. Son 18 has Marfanoid Habitus with joint pain, allergies, breathing problems, mitral valve prolapse, and mutation on ZNF469. Zilch came up for my daughter. I do know someone with two connective tissue disorders confirmed genetically. It's almost like getting struck by lightning. Twice.
Evie Maddox I would think she’d have hEDS by the symptoms you’ve listed. Hyper mobile type doesn’t have a gene. I’m not sure if I understood your question correctly but I read it as you were saying that it didn’t show up on a blood test but it wouldn’t.
I commented on your last video about HSD as there was some pretty big mistakes, so I’m so happy to see that you’ve made a new one to correct it! However there’s unfortunately still some misinformation here.
First of all localized, peripheral, generalized etc is only used to describe where the hypermobility is located based on the beighton score. They have nothing to do with anything else.
People with P-HSD can suffer the same symptoms, comorbidities, severities etc.. While you might only be a 3 on the beighton scale and therefore be diagnosed with P-HSD you can still have issues and pain in every joint in your body
There’s no such thing as two types of G-HSD. Sure some people do have more systemic involvement, but someone with L-HSD can have systemic involvement too. It’s believed that a big portion of those now labeled as HSD will be assigned a type of EDS or similar CTD as new types are discovered.
I’d suggest looking up the ehlers-danlos toolkit or Eds UK for some great info on HSD :)
Also forgot to add: muscular dystrophy shouldn’t cause hypermobility as it affects muscles and not ligaments and tendons.
In HSD and EDS the ligaments are loose and stretchy and therefore doesn’t support the joints. That’s why our muscles try and compensate. However that’s not the case for “normal” people
Hi!! Where did you get the info that the different HSD categories probably are going to be classed as different types of EDS in the future? Just curious
I recently got diagnosed with G-HSD by a rheumatologist, he wasn't comfortable diagnosing hEDS and would rather send me to a geneticist for that (he put a referral in, will take awhile) haha but its funny because I did meet the criteria (: only time will tell, just gotta stay positive !
Could you make a video about how you manage symptoms while in college? I'm only taking two classes and I'm having trouble even keeping up with those because of the fatigue and gastrointestinal symptoms. Strangely enough the joint pain seems to be the easiest thing for me to deal with lol. You seem like you've figured out how to handle some of it. Love your videos!
Yes, I'd love to make a video on this. I'll do it!
It's also more common to have Pseudotumor Cerebri with EDS than the general population. PTC only affects 10 per 1,000,000 in general but with EDS it's more common.
This video is super useful in explaining to people what's going on! So I don't have an official G-HSD (like I was never referred to a rheumatologist or fully investigated) but multiple have doctors have been like 'yere its definitely that'. I was going to ask to be referred to rheumatology but I'm waiting to get some other test results (I have a POTs test and things) before I go so that I can go with as much information as possible to see if it is G-HSD or hEDS. Wish me luck!
Thanku for explaining this so well.
It’s so hard to explain to family and friends the problem I have - and why I can’t do certain activities at sometimes and how it can flare up and won’t go away with just a pain medicine
I have no idea what I have. My physical therapist definitely said I'm hyper mobile. My wrists grind and make popping noises which hurts. She suggested I get surgery for it because it's a ligament issue not a muscle issue.
I have been watching a lot of your videos because they help me break down all the differences in HSD and EDS. My GP told me to study HSD/hEDS, POTS, and the like because I have some almost-clear symptoms of them. They're just not as clear because my tachy is only 145 ish (60-70 resting) and minor orthostatic hypotension! And I don't think I pass the Beighton. We're not sure though if that's because I already eat a lot of salt and do other things that mediate the symptoms. Thanks for the videos! I'm slowly getting through them haha
I score 1 on beighton but have neck instability, tethered cord syndrome, and have a lot of pain in my joints. But they don’t move in the way people with hEDS do. But I probably do have hEDS like you say!
Doing a project on this, thanks for breaking it down!
Every time I see the word hyper mobility, I check to see if I have it. I know for a fact I don't, but my brain has to check everytime.
I was pretty sure I had eds because even though I have hypermobility and skin involvement (enough to get a dx) I mostly have internal symptoms like gi issues. I just got diagnosed last week after a lifetime of mild struggles. In still getting used to having a diagnosed chronic illness which I've never had before.
Ps your video with the thumb toughing your forearm in the thumbnail came into my feed, it was the first time I realized I was hypermoble and spiraled into me getting my diagnosis, thank you.
Was diagnosed with hEDS, and my geneticist was basically like "yea you'll basically be in pain forever" biggest L
My knees, elbows, fingers (all ten), toes (all ten), wrists, and my ankles all have joint hypermobility. My wrists, elbows and knees get pain but not regularly and they pop and crack with pain every once in while when I move it, (this probably happened maybe 2 a week).
I've got either LHSD or GHSD just because I havent had a full workup of which joints are hypermobile but they sure are all in pain! I also have some digestive issues but that might be separate. I'm honestly shocked that in all my years as a dancer I've never dislocated a joint, knock on wood. Funnily enough I also have a scoliosis. What Fun.
I have hEDS-like HSD because I’m not close with my dads side of the family but I know they have joint issues. Like my dad dislocates and relocates his knees all the time. He used to be a gymnast so he was clearly flexible. He and his mom both have scoliosis. My geneticist literally put a “?” next to that criteria and that one point is what differentiated hEDS and HSD for me. My geneticist said I could call it either and in my case there’s no difference because I don’t really know my family history.
I also have POTS and MCAS
As always I loved your video Izzy and appreciate the information! This was so helpful 😊❤️