What Is Hypermobile Spectrum Disorder?| Purple Ella

[@EmergencyInductionPort]

Was told as a teenager, about 20 years ago, I had joint hypermobility syndrome. In those 20 years since its literally never been brought up again by my Dr despite me suffering with most of the complications that come with it. Any time I've tried asking physios or Dr's about it I was always just told "oh it just means you're bendier than normal that's all". My whole adult life so far has been absolutely ruined by it and its so rage inducing to now be finding out via videos like this not my Dr that the vast majority of conditions I have potentially all stem from my hypermobility and its all been treated wrongly my whole life! Massive thanks for this video. Think I need to tell my GP I want my hypermobility looked into.

[@ciaraskeleton]

Oh my goodness, a physiotherapist did an assessment when I was 16 after I badly injured myself after going on a freaking walk (lol) and said 'yeahh you have Hypermobile joints' and left it at that. Never heard a word again. My doctors have only ever said 'you may be more at risk for arthritis' and that is it. They truly do not understand the plethora of pain and issues that come with HSD. I'm 25 and have to take 3 weeks off my feet after walking for too long (which is a mile or more) BC I will fully injure my hip and knee and not be able to walk. I'm not unfit, I'm not heavy, it's purely down to my joints. I can't run because my ankle, knee and hip joints pop out and go numb mid action (is that dislocation? Idk), so my leg goes dead and I trip and fall. It's ridiculous 😂 I have ASD too so I got the fun combo of that, and constant stomach pain 😂

[@theworldsastage6231]

I agree totally my daughter has been complaining for over 10 years and her sister and myself also have spinal condition her spine is now even worse she’s 22 !

[@poppypocket2290]

Thank you for making this! It’s so hard to find things that explain it so well and emphasise that just because it’s not EDS, it doesn’t mean it’s not as severe to live with. :) x

[@bladebitten2766]

Exactly. So many times I'll look for things to do with HMS and most of the time, all the results I get back are EDS

[@VelvetCrone]

i've never been so grateful to a complete stranger in my life. i'm 62. thank you so very much!

[@IMBewildered]

WOW! I was born with “loose joints’, as were my mom, several aunts, and my daughter. I knew I was different, and I did lots of fun “party tricks” with my loose joints. I could hands, fingers, elbows and knees different degrees of backward. I could lie flat on my back with both knees bent out 90 degrees to the sides and my feet near my armpits. I never had a problem with it, and in fact I was a Limbo champion! However, now I am 75. I have had seven surgeries on my feet, chronic Achilles Tendon injuries, repeated dislocations of my knees, arthritis in both thumbs and several fingers, Dupuytren’s Syndrome of both hands, and scoliosis. Both knees have been replaced. On my left side I have chronic shoulder, hip, and thigh pain. I also deal with fairly mild anxiety and panic attacks. It's amazing to find an actual diagnosis of this anomaly.

[@wishyouell]

when i went to the doctors for hypermobility i described what i was going through and they just said "yeah a lot of pain is common in people as flexible as you" but they completely ignored how frequently i get sprains and my heart issues and my gastrointestinal issues :/

[@Luv_brd]

Holy shit!!ASD woman here, I thought I had arthritis but this fits better! I googled it after watching this video and it is undeniable that this is what both my sister and I have suffered!! I'm mentioning it to my doctor at my next appointment!! Every single symptom you have described yourself having both mentally and physically match me, it's almost uncanny! Im now going through all your videos from the past and girl you have literally changed my life!! My sis and I are both "high functioning" autistic (trying to avoid functioning terms but idk how to say it yet) and we both have ADHD and PTSD and have never found a resource as well-rounded and perfectly helpful as your channel is!!! The best! Thank you so much. One day when I get a better grasp on my executive functioning I'd like to make you a gift with my art like perhaps a song on painting to honor your dedication to changing lives for the better! I'm so inspired by you and when I'm having a meltdown or bad anxiety I can always come to your channel for some clarity that helps me feel so much more grounded and confident with a sense of peace and so much less shame. That's a huge one- you've helped me shed my shame for my lifetime if disfunction and emotion regulation issues. You're my hero, straight up. I said it, I mean it! Thank you

[@ciaraskeleton]

I'm an ASD woman too and I was diagnosed with a vague 'hypermobile joints' when I was 16. I didn't even know what it meant, they never explained, I didn't realise that it was Hypermobile spectrum disorder that was causing my chronic pain/big injuries from small activities/random pain all of my joints 😂 This video is saving me right now! The link between ASD, hypermobility, and gastrointestinal problems is crazy! Most of my Autistic friends have Hypermobility, or pain, or stomach issues. ❤

[@hisomeonetrackingmuch1309]

ADHD late life diagnosis here. Got diagnosed with Fibromyalgia & IBS early 20's, before Fibromyalgia was medically recognized. I also have arthritis ( I'm old now, but young for that!). It's crazy to me that no health providers have ever mentioned EDS to me. I'm 55yrs & can hardly walk, but I can still easily touch my toes. I used to sit with my feet tucked behind my head while watching cartoons. Lovers would always marvel at how velvety soft my skin was & how easily I bruised. I'm angry that no Dr. ever mentioned EDS & that it can have all these co- morbidities!!! I wouldn't even know the term EDS if it weren't for a friend

[@Beeatrix]

Same here!!! My mind is blown!!

[@fineartlifestyling]

SI joint dysfunction, cervical radiculopathy, anxiety, neurosis, gastro-intestinal problems, and yes the weak bladder. You are so right!

[@puddincakes1005]

Lol is this my patient history chart? I literally have those too. My doc just barely started looking into this with me.

[@francinebacone1455]

Last month, I was finally diagnosed with Hypermobility Spectrum Disorder. IT HAS BEEN SOO CONFUSING!! @PurpleElla, thank you for this video. I FINALLY GRASP why I'm hypermobile but not EDS, but somehow still EDS? I've got the orthostatic intolerance in spades, but its not POTs (heaven forefend my body be so classically presenting!), so nothing shows up on tests... oh, it's been so confusing, but THANK YOU. THIS IS THE CLEAREST EXPLANATION OF THE EDS/HSD/HEDS DIFFERENCES. THANKYOU! I think I get it now and it makes total sense that they want to differentiate genetically rather than symptomatically.

[@theworldsastage6231]

It’s all connected wow all these issues I’m experiencing with myself and daughters all going through dianogis for autism and the more I explore the more I see I’m on the right path thank you

[@michellek8631]

I have hyper mobility with strong pain issues . I don’t have eds. I am in the process of of prolotherapy treatments and it’s already helping more than anything I have tried . I have tried so much for pain relief .

[@Willowing_Weaver]

Welcome to the club. I was diagnosed with EDS hypermobility about 6 ish years ago. Honestly it's been a tough few months, so everything is kinda blending together. I spent over a decade trying to find answers to my physical health. And then only in the last 6 months have I realized that I'm autistic and bringing it up to family was basically met with, "uh, yeah, you've always been different and always too smart for your own good." I've known about autism for so long but I never really looked into the signs for women. It makes a lot of things make a lot of sense. But I hope you get all the help with the HSD and that doctor's take you seriously about your physical issues.

[@siennacheesecake179]

Hi, I’m 15 and I have HSD and lots of chronic pain! Yay me! Thank you for all of this information, this has really eased my mind as so many people respond to me when I say I have hyper mobility, respond with “oh yeah I have that too!” And it really gets on my nerves as they DONT GET PAIN and they’re most likely a dancer and can run like a normal human being.

[@victoriarintoul8807]

Thank you for this video, I only got my diagnosis of autism in 2020. And last year diagnosed with Hypermobility and fibromyalgia my pain is all over. I found this video very interesting and helpful 😊

[@13fyrefli]

I just found out I’m autistic too.

[@Truerealism747]

Me to have you found anything that works ime awaiting to try ADHD meds they can help apparently

[@victoriarintoul8807]

@tomsale5142 I've tried a few different things, but so far, nothing has worked. Will need to go back to the doctor and try something else 🤔

[@Truerealism747]

@@victoriarintoul8807 have you tryed ADHD meds for pain ime awaiting to try

[@LeonorCorteRealll]

Thank you so much. I have received the diagnosis for HDS 2 years ago. Whilst I felt that I checked more boxes for hEDS, I did not pass the test completely. Thus, the doctors I spoke disregarded it immediately, which felt quite invalidating for the broad scale of symptoms that I have. Despite the poor knowledge and support my doctors were able to provide me with, I have learned individually by articles videos like these what HDS is and the needs that people with this condition have. For other people with HDS, I'd like to say, it is so so important it is to find the right treatment, doctor or specialist and to take special care of our bodies on a daily basis. For me this means gaining more knowledge on HDS and getting to know my boundaries and understanding that I *have to* respect my body's boundaries in order to continue and move on, quite literally.

[@chippytea1-i7s]

Hello! I got my diagnosis of generalised hypermobility spectrum disorder today after a lifetime of being human origami and struggling with pain and joints that like to flop out. This video is clear and easy to follow, I feel a lot less confused. Thank you so much x

[@creekrokos]

This video is so timely for me Ella, Thank you! Last Friday I was told I had MS, and then on Monday I saw a Rheumatologist and now we're looking at HSD and hEDS. It's been a bit of an emotional roller coaster to say the least. I'm also Autistic as well! I'm glad you got a diagnosis and are being paired with specialists. If my blood work from Monday comes back positive for markers of HSD/hEDS it's going to be a year or so before I get to the top of the list with a geneticist here in Canada. I see my Neurologist middle of next month so I guess we'll see what next steps are then? Thank you so much for your video. You're about 15 months ahead of me in the journey, so I would really love more videos. :)

[@hedy_7084]

Mutable Dreamer I’m interested in learning more about what came about with the bloodwork and progress seeing a geneticist?

[@TheEternalTaoist]

I’m interested to know how your appointments turned out. I’ve been in a similar boat, living with symptoms for 20 years (I’m mid 30s now) and they’re just now putting two and two together. I have hypermobility, heart arrhythmias and other cardiac issues, dysautonomía, seizures, hypoglycemia, mast cell activation issues, off and on hearing and vision problems, IBS and slow motility and the list goes on. It’s so hard trying to hide everything from employers as well. My net stop is rheumatology as well. I wish you best of luck on your medical journey.

[@Dulcimerist]

@@TheEternalTaoist Have they tried you on Mestinon to treat the dysautonomia and digestive motility issues yet? My doctor recently put me on that to treat multiple hEDS issues with one medication, and the Mestinon is working quite well for me.

[@Dulcimerist]

@Erika Rouby Did you get diagnosed with Hypermobile Spectrum Disorder, or one of the types of Ehlers Danlos syndrome? Treatment depends on which symptoms are the most severe and debilitating to your everyday life. Since we can't replace all of the defective collagen in our bodies to cure it, our treatment plan focuses on symptom management. If pain is a prominent problem, I highly recommend getting referred to a pain specialist to put together a pain management plan and to also find a good exercise plan for you - maintaining muscle mass and avoiding inactivity and muscle atrophy is the key to preventing your symptoms from worsening.

[@gamerkitti]

@@TheEternalTaoist but a doctor but it shins like you have POTS

[@killiansirishbeer]

Thank you for this ❤️ I have ADHD, depression, anxiety, headache, and probably also some gastrointestinal/urological issue. I was recently diagnosed with HSD. I had heard about hEDS, but it never seemed to apply to me until I watched a video of Izzy Kornblue where she put body chalk everywhere she hurt and quickly explained the different kind of pain. That's when it clicked. Thankfully I found a great rheumatologist who actually helps me! One thing I hate is that there's not really a similar terms in French for HSD. So when I talk about my medical issues they all seem like adjective. ADHD= inattentive, hyperactive, HSD = hypermobile etc etc

[@buckyistryingtheirbest]

I was diagnosed with hypermobilty late last month ive been trying to find communites and more words to describe it specifically. Thank you!

[@animalgamesforyou03]

I am hypermobile

[@Truerealism747]

​@@animalgamesforyou03do you have fybromyalgia

[@SodaSpeakNow]

I was diagnosed the day this came out! Thank youuuuu!!!!

[@neulasia]

great video, clear and informative. now could you please come and explain this to my doctor as well? :)

[@Moeeex]

@Be Happy you'd be surprised by the count of doctors I've seen who had no clue about this

[@Moeeex]

@Be Happy this one time had been at head of department doctor at the biggest local hospital, the second had been a specialist at another "leading" hospital. one literally Google searched in front of me to learn about it, the other recognized it but didn't want to be held accountable in regards to writing the official diagnosis because it would disqualify me from having to join the army. it's absolutely ridiculous

[@sarahjackson7889]

Hi I think you’re 👨‍⚕️ is silly and you have it but your doctor is a pain in the bump

[@mynamecausesconfusion9829]

Say it again Sista 🤚🤚🙌

[@poppypocket2290]

This comment!!! It’s taken me 6 years through the nhs for a diagnosis after being 6/9 score and almost every single symptom on the list!!

[@HomesteadHerbal]

Just got back from osteopath and I'm hyper mobile (generalised) and have a lot of associated issues and really appreciate this video !!!

[@NoelleOrElle]

Super helpful, when I was tested for EDS I had all the symptoms and hyper mobility but just not quite enough to be the level of diagnosis, now with a spectrum I feel like I could go back and just be diagnosed with a lower level version

[@johanlindblom1]

I was tested for eds aswell and This week i got diagnosed with hsd. You should definetly go back and check for hsd. Good luck! //J

[@lizarr7176]

This was very straight forward, well organized and informative. Very easy to understand. Thank you so much for making this video!

[@onlyusernameleft2]

Omg I just started pt for pain in my upper back and after the guy looked at my posture he asked "were you one of those kids that could bend over and touch the ground with your palms?" I was surprised he could know that but he told me about the hypermobility spectrum and I just kinda disregarded it at the time. I'm going to bring it up to him next week. I'm going to be in physical therapy twice a week for at least two months because of kyphosis and basically my muscles are too weak to hold my bones in place. It makes so much sense now, and watching your video was like the last puzzle piece falling into place.

[@lovenothate]

Thank you for this! I was given the diagnosis of benign JHS just a few weeks ago, guess my doctor didn’t get the memo that it was outdated. My hypermobility is definitely not completely benign…I have pain levels that range from barely there to bed-ridden and is always there in some shape or form. My hips and knees are the most flexible, allowingme to turn my feet backards likemy father could, but my wrists and back are also very flexible…one of hte first things my doctor asked me to demonstrate to diagnosis was to touch my thumb to my forearm, which I did with ease as always. So I guess that’s generalized HSD? I was told I probably don’t have full-on EDS…is there such a thing as a little EDS? Just geting the diagnois has helped me find ways of managing the pain, though my doctor was very pleased with all that I already do…i mean, I’ve had over 30 years to figure it out on my own.

[@Blacksquareable]

Gosh maybe a bit tmi but the brain not communicating with certain parts of my body including what goes through the stomach - yes.

[@mandyrobbins2160]

Aside from autism, I have all of these issues and probably POTs as well, and it SUCKS! I'm still trying to get a diagnosis at 42, and it's proving very difficult to find a place that understands and is able to evaluate me. Would love to know where/what type of doctor you're seeing who is actually knowledgeable about HSD. Thanks so much for putting this out there!

[@elenapaints972]

Great video, really helpful as I find this all very confusing! Another comorbidity is lipoedema. (for anyone who hasn't heard of it " is a condition that mainly affects women and is characterised by a painful swelling in the legs, thighs and buttocks and sometimes the arms. occurs because of the abnormal accumulation of fat under the skin.")

[@sundoesshine8800]

Yup, I believe I'm the proud winner of this combo.

[@MelanieFromCanada]

@@sundoesshine8800 me as well 😞

[@storytimewithnannyuk8185]

Fantastic video. Informative, easy to understand and delivered in a friendly manner. Brilliant 👍💖

[@Moeeex]

very informative, I wish more people and especially doctors were aware of this. thank you!

[@humnahaider3892]

Thank you for making this video, it's important to increase awareness of this disorder.

[@thomasdehee9626]

Thanks you! Stay strong and stable! Sending love from France

[@Laundrey1]

Thank you for this! Been on my journey since January if 2019 and even more so since March of 2019, when I found out there was a correlation between all my GI issues and diagnoses and hEDS and HSD. I'm not sure if I pass criteria A for hEDS but I have a ton of the issues that come with it, including POTS and gastroparesis. Just trying to figure out the difference between HSD and hEDS. I have the pain all over and a beighton score of 7, constant subluxations all day long along with the ability to willfully dislocate some joints easily, scoliosis, and did I mention pain? Oh the pain! There's more but I can't think of them right now. Anyway, thank you for this video. It is helping me on my journey.

[@Dulcimerist]

Glad that you've been able to find answers! My hEDS diagnosis was delayed 17 years, due to my old doctors having incorrect information and misnomers about EDS. The good news for you is that an old and very affordable medication called Mestinon is emerging as an effective treatment for both POTS and gastroparesis in EDS patients. One medication to knock out multiple issues means being on fewer medications.

[@rebeccacain3352]

Ella, thank you for sharing. This was very helpful. Whenever you see a specialist please share that info. Eg. Specific exercises to help or that can be done without harming the body.

[@ryanchase636]

Thank you for this incredibly eye opening video. Another avenue to consider is oral health. I suffer from an array of disfunctions like teeth grinding at night and many other problems like jaw popping that could all be explained by connective tissue problems. I'm on the extreme end of flexible and suffer in almost all the ways you mentioned, with some other nasty injuries thrown in the mix like shoulder impingement injuries that were borderline rotator cuff tears. I find if I keep my lower back (sciatica) "popped regularily" or free of subluxes, my digestive health improves almost instantaneously, and declines when the subluxations form again, and need to be cracked again so to speak. I pop all my sore joints or else I can't bear the pain that builds up over the day (roofer).

[@savy7555]

This helped me a lot thank you. I have IBS, autism and at age 5 I was having a pending diagnosis of Marfans and EDS until I was 14 and a geneticist said I did not have it. I was suspected of having something on those genetic disorders because I have a very high Brighton score and my arm spans is longer than my height along with arachnodactyly. My joints pop and snap a lot but no pain unless they get stuck when I hyperextend ,my jaw acts the same way. Low muscle tone has also been a problem to the point where using utensils and tools hurt my hands. I’m not sure if it’s in the spectrum but it’s been 10 years since I was undiagnosed

[@WingZeroDuality]

Great video. I was watching this video laying down in a really bendy position wondering why I’m feeling a bit out of pocket. 😂. Happy new years.

[@PJ-xs3jx]

Great video. Lots of similarities to my experiences. Another thing that I recently learned was the role of interoception in SPD why some of what I thought was a bladder control problem was for me at least partly a variable awareness of needing to go until the last minute. I think the combo of SPD, HSD & Autism (including motor features) is a very difficult intersection because (for me add in some neglectful and abusive parents in a closed religious community) I have experienced lifelong, and ongoing to this day, problems with communicating my physical, neurological or emotional experiences to other people since childhood.

[@EG-hj6lo]

Thank you for your video! You just described me at 100%! My appointment is on the 14th

[@laurataylor8717]

Do you have other conditions? I believe I just have hypermobile spectrum disorder because I've never had any dislocated joints or pain not associated with a sports injury. Someone with EDS recently noticed the way I stand and asked if I can touch the floor with my palms, etc. Yes, of course I can. I also have Raynauds, extreme myopia, and sensitivity to acetominaphin, which are apparently all related to this. I've never been tested for EDS. This is all so new for me to learn about.

[@RainbowZebra73]

Thank you so much for making this video. I was tested for heds 14 days ago but didn’t pass because of my skin. I score 9 out of 9 on Beighton score and I do have a lot of the things that can be heds except for the skin. I do have mild skin hyperextensibility.

[@hmcmordie3606]

Thank goodness for you, I feel I understand quite a lot of complicated info this will help me and my daughter 11 on our understanding We are still waiting diagnosis for spectrum but I have learned recently about the hyper mobility which she most certainly has which was I did not know was related to Asd xx

[@mirrorverses]

!!!! The bladder stuff is really interesting, I've had issues for years but it's embarrassing so I don't really mention it to doctors. my main thing is that I get a lot of bizarre pain, but I never have something visibly sticking out or wrong. Stuff like I feel like I'm being cut in half in my pelvis, or a sharp stabbing pain in my chest. The *potential* subluxations with no visible joint issues are a lot rarer: a finger joint feels a little stuck, but it doesn't get better but it doesn't hurt that much, or my leg feels weird and not totally attached but once I lift it something pops in my knee and I'm fine. But they happen. So I just feel weird bc I just want someone to help me put the puzzle together.

[@walkingthroughashes8982]

Great Video, I defiently have HSD but i haven't been able to find out more information.

[@viviennethomas2986]

Thank you for explaining this for me I’m hyper mobile and my mother has hyper mobility Eds hers is really bad and we don’t know if me or any of my sisters have eds I’m trying to research more on eds

[@julieroberts2757]

What kind of doctor is it best to talk about this with? My awesome PT just figured it out: chronic problems and pain with hips, shoulders, wrists, feet, fingers, toes, constipation, rectal prolapse, constant indigestion, heartburn, anxiety disorder, sensory processing issues. Crazy to know that I’m not crazy!

[@Dulcimerist]

Usually a geneticist, or possibly a rheumatologist - if they happen to be familiar with HSD and EDS. Management of symptoms could include specialists for the various issues the your HSD or EDS causes. Mestinon might be prescribed for the digestive motility issues and dysautonomia. Perhaps Guanfacine or Clonidine to treat the anxiety issues associated with HSD or EDS.

[@lindadello9822]

Thank you❤

[@ghweeaaaa]

Thank you for the information.

[@katandthat4151]

I was diagnosed with hypermobility in June of 2018. My doctor wants to send me for genetic testing for EDS. Can't afford it. Maybe one day.

[@Beeatrix]

I'm crying inside. I'm obviously on the spectrum and have been ignoring my Hypermobility issues. I thought I was going crazy.

[@literallyjustreilly]

i also have generalized hsd! i also have quite a few mental health issues and physical health issues too.

[@Truerealism747]

Mr to where do you suffer your pain

[@kimberlyhovis5864]

I think I have this. Thank you for this!

[@thecatfarm]

THANK YOU!

[@pamgully7388]

Very useful, clear video.

[@kellyvanorden3474]

I too have gernaize hypermobily & autism

[@fm4174]

My little fingers could bend more 90 degrees but now the tendons are constantly subluxating everytime I try to grip something.

[@katyd4183]

Thank you for sharing this. What type doctor finally made your diagnosis.

[@DeniseSkidmore]

I think I have regional hypermobillity, but it is very hard to get diagnosed.

[@NeoMorphUK]

When they opened up my hip the first time they found internal scarring of the soft tissues around the joint but didn’t have a clue why it happened... this was in 1985... 16 years before I was diagnosed as Hypermobility Syndrome which has later changed to hEDS then later still HSD as I have had chronic pain since the 80’s, gastro problems, scoliosis (curved spine) and subluxate and dislocate often. My left shoulder subluxates while the right shoulder goes the full hog and dislocates. Heck, that shoulder almost dislocates just by relaxing while sitting down or standing up and then it goes POP. I also have anxiety attacks so that I hate going out. My car has done under 1000 miles in 3 years. I have to walk with 1 elbow crutch as using a crutch in my left arm pops either the elbow or shoulder out while my really weak right shoulder gets pushed into the joint so using the crutch helps. HSD is really weird and I wish I could do without my meds (especially my painkillers and NSAIDs) as they make my bowel and stomach worse. So Purple Ella, great job on this video educating people but please emphasise that it’s also classed as an “invisible disability” as it doesn’t seem like anything is wrong with us just to look at us. Also, why is it that a lot of my HSD friends and I try to put on a brave face and laugh and joke with everyone while they are in pain... my dad was just the same (he was the one who passed the defective collagen gene on to me). I’m always laughing and joking about this condition even though I don’t feel like it a lot of the time. Take care and keep up the good work. Edit: Okay, I’m blind too. I posted to this video because it only just appeared in my KZbin suggested timeline lol. Then I noticed it was from 3 years ago. 😳

[@MrsXx]

Thank you so much for such an informative video. Very helpful.

[@v78981]

Thank you so much for this!

[@annaepps559]

Your video best explains all of my questions. Thank you so much.

[@xfirefoxy]

I looked at hypermobilty randomly. I suffer from pain but never had a formal diagnosis. I told my doctor I might have it and they kinda agreed. But I'm going for a colonoscopy and gastroscopy on Sunday. Coeliac runs strongly in my family, I'm also autistic. But I didn't know hypermobilty could cause stomach problems as well. 😩 Might be worth me mentioning as a possible cause since I actually haven't got a diagnosis. If I can help it I'd rather not have cameras stuck up any part of my body again. 😂

[@andrewmorton395]

I have this as well, with my aitism.

[@benudubey4511]

Have you ever tried dextrose prolotherapy?

[@laudiewhite]

Thanks for a very informative video! Currently in the long winded process of trying to get a proper diagnosis of HSD, rather than GPs usual 'well it might be?...' 😂

[@sgrace6813]

Hiw do tou get medical professionals to help, take tou seriously, diagnose and put tou in a treatment plan? I am desperately needed those.

[@yvonnemariane2265]

Supposedly this is a 'hereditary disorder' when I'm pretty sure I got it because no one coached my to crawl (and we had a rough carpet that burnt my knees apparently), the most healthful way to get our biomechanics in working order.

[@lynnmurray5852]

I'm hypermobile, and so is my daughter, even though neither of us has been diagnosed with it. Doctors can be rather dense in the US. Interestingly enough, there does seem to be a correlation with autism and EDS.

[@13fyrefli]

I just found out about a year ago that I’m autistic after reading about the correlation. I was floored.

[@lovenothate]

WAit…are sublapses whe the joint gets stuck and then there’s a loud pop and its all good to move but the pain si strong? I think I get that in my knees and hips especially…

[@mantha8583]

I have just found out today that my Autistic daughter (who has also had and sometimes still does have constipation) has hyper mobility, I think I may have it too but I don’t know what their scoring is my daughter scored 6 and was diagnosed with hyper mobility but I tested myself but I can only do 5 of the things my daughter can. I do have pain in my hips but doctors/GPS cannot find a cause so I am wondering if this could explain my hip pain. I am also Autistic, have depression, anxiety and PTSD.

[@Maddybrough199]

My 9 month old baby has just been diagnosed with hypomobility xx

[@ellasanderson2597]

I have this ! I have pain in my muscles a lot. I have to do Pilates and take pain killers .

[@SaraMichelleASMR]

Thank you for this! I’ve been dismissed by my rheumatologist because she said I’m “not hypermobile enough” for hEDS, but I have periods of time (flare-ups?) where all my joints go loose and sublux and I even tore my meniscus walking to the kitchen, so I think it must be something. What type of doctor diagnosed you?

[@harshityerram8966]

Does hypermobily affect hair? Will it cause hairloss if hair is long for example? Can we hv a normal diet or do we need special diets?

[@FluentWithHayley]

Hi! Thanks for making this video. Since this is still so new, does anyone know how to go about obtaining a diagnosis for anything on this spectrum? I just got approved for PT due to my shoulder and initially the physician asked me if I had EDS, but since he thinks my Beighton score would be low and I have no heart murmurs, he’s since stopped talking about it. Who can diagnose me or dig deeper? (My PCP has not been helpful)

[@FluentWithHayley]

Also, I’ve tested negative for ABA, RA, & Sjorgen’s. If that helps 💙

[@sarahjackson7889]

Hi Jhs it makes me have loads of pain in all my joints in every part of my body 😋😘😌😇☺️

[@mauve3734]

I think I have GHSD I have pots and gastroparesis and I wanna know why

[@Lvestfold4143]

I definitely have hypermobility spectrum disorder and i think it caused my hip disease.

[@13fyrefli]

I have had bursitis in my right hip for years. It’s miserable.

[@kynby24]

Great video.

[@MagickCat1]

How did you get a diagnosis? Did your gp refer you?

[@robinshood2018]

I have it

[@RAE-homely-fairy-of-the-light]

So is this Ehlers Danlos Syndrome?❤

[@izawolf8197]

Not a relatively new disorder, we just understand a bit more about it and how it affects people.

[@sophisticatedwrat]

I wonder if this is more common with people with ADHD and autism

[@jessicalanger7599]

it is!

[@13fyrefli]

That’s how I found out I was autistic. There’s a huge correlation between the two.

[@theanneschreuder6496]

First HSD was called HSM hypermobility syndrome i was diagnosed with generialised HSD last week Sorry for my bad English i am from the Netherlands

[@lornajoy8765]

I have fibromyalgia and am not at all hypermobile and don't think I have ever been. However...I do have pretty much the same 'systemic' symptoms. I am sure there is a link somewhere...

[@underestimated.dermestid]

I have both. Just got diagnosed with fibro.

[@Dulcimerist]

Yeah, my hEDS was initially misdiagnosed as fibromyalgia. After I was properly diagnosed with hEDS it disqualified me under the fibromyalgia diagnostic criteria in the differential diagnosis section.

[@zethcrownett2946]

Thank you so much for this! I've been hypermoile my whole life, with no pain or issues. Starting around the end of high-school, I started noticing my joints sliding out of place when I work out or just sit in place for ikd how long. My wrists pull out of place and pinch nerves (which my SO figured out how to help readjust them for me so I'm not in pain all day). When I'm sitting, sometimes my hips slide out of place and pinch nerves as I try to stand and I have to wait a bit to try and get it to move back (haven't figured out how to fix that one yet). And frequently my knees shift out of place, as I feel most comfortable sitting criss cross or crossing my legs, when I go to stand after, I feel immensely old as my bones don't want to move and it's painful and takes a few minutes to stop. I push myself more then I should and keep trying to walk anyways which leads me to waddling around hunched over for a few minutes. Listening to you has helped me better identify where these issues land and that it is likely worth while talking with my Dr about. Thank you.

[@raaachelb_]

What kind of doctor do you see to get a hyper mobile spectrum disorder diagnosed ?

[@animalgamesforyou03]

I am hypermobile

[@sahilbansal396]

Hypermobility is autoimmune disease Ye or no

[@APH1991]

You sound a little bit like Stephen Merchant. A much more sweeter voice than his.