Joint Hypermobility and It's Co-Morbidities

Brad T. Tinkle, MD PhD
Clinical Geneticist
Peyton Manning Children's Hospital
Ascension Healthcare

DOM Grand Rounds 6/24/2021

[ldeiker]

I don’t know how many times I’ve tried to explain: I don’t have hyper mobility because I was a dancer, I was a dancer because I had hyper mobility! I got so much attention for my “flexibility.”

[mandyrobbins]

I don't understand why the Beighton score doesn't take hyper mobile shoulders and hips into account. Those are my most affected joints.

[rhifunke]

Thank you. I was taught that I was just a whiny kid and told “you shouldn’t have that kind of pain, you’re too young. “
And they’d leave it at that. Now I’m in my mid 30s and all my joints just kill me now.

[KimDsmom]

Will be 59 this year… and self-diagnosing with hEDS (also have been diagnosed by physicians with MCAS, CFS, FM, Hypothyroidism, TMJD, Tinnitus, Burning Mouth Syndrome, and have a slew of symptoms, sensitivities and triggers. I had Mono at 18, and everything went downhill from there. Have had to be my own “doctor”, as I have never gotten much help or treatment; though I have been to countless doctors and specialists throughout my life. Helpful and informative video. I definitely see myself in the description. Wish doctors knew more about autoimmune and supposedly “rare” conditions, that aren’t truly rare… it’s just that many people go undiagnosed. 🙏🏼🙏🏼

[MamaBearHomeschools]

I have very severe hypermobile Ehlers-Danlos syndrome and wasn't diagnosed until 2018, when I was 36. I had to figure it out on my own and then find a geneticist to confirm. I have had dozens of surgeries, but to name a few: scoliosis fusion and rework with extended fusion t3 - l3, 17 surgeries on my right foot ankle and calf, 12 surgeries on my left foot, right hip surgery as my glute tendon completely tore off my femur, SI joint fusion, currently have pelvic prolapse of my colon and my bladder but trying to hold out on surgery for as long as I can, Left knee scope for torn meniscus, My left thyroid removed, my appendix removed, lymph nodes removed in my throat when I was a toddler, two c-sections, and the list can go on.

Surgeries I currently need: I have four tears in my right shoulder and three in my left shoulder. I have severe TMJ that needs surgery. Because of the TMJ, I am going to need probably all new teeth by the time I'm 50, currently I'm 41. All of my teeth are broken and have chips and cracks all the way to the root. I can't wear anything to protect my teeth, because when I take it off in the morning my jaws dislocate and it's very painful. I have three tears in my left hip and one tear in my right hip again. I can only sleep on my back, no longer on my sides or my stomach. I have three severely bulging discs and arthritis in my neck. I've got severe arthritis at the bottom of my spine as well, well all throughout my spine. The cartilage in my nose has torn and it is about to break through the skin, so I'm currently searching for a nose surgeon who knows how to fix it, so that I don't have to pay for a nose job with a plastic surgeon. I've gone to four doctors and all of them have told me no. I have tears in the tendons in the back of my knees. I have carpal tunnel syndrome in both of my wrists and my fingers fall asleep or hurt, just depends on the day. I cannot write unless it's a short note. I'm trying to do everything I can to stay out of a wheelchair. I currently have two children ages 9 and 11. And thank God I have a wonderful husband who is my soulmate!

I also have a ton of other health issues, a broken xiphoid process, extreme pain in my ribs, moderate POTS, ulcerative colitis, hiatal hernia with GERD, mild to moderate gastroparesis, motion sickness, constant heartbeat noise in my right ear, migraines, CONSTANT PAIN ALL OVER MY BODY ESPECIALLY MY LEGS AND SPINE, depression, rosacea, the list goes on and on again.

I'm excited to see that more and more people are getting educated on Ehlers-Danlos Syndrome. Many doctors just think it's a mild condition where you may dislocate a joint or have subluxation, but it's a beast of a disease.
Thank you for educating people and for this video!
❤❤❤🦓🦓🦓❤️❤️❤️🦓🦓🦓

[Holly_Unleashed]

This was well done. I appreciated that he is more focused on improving quality of life for symptomatic patients than naming and classification based on arbitrary made up scales.

[kagitsune]

Regarding the Mayo clinic handout, they even found a correlation with high academic achievers?? Holy cow, I'm so glad that the science is finally starting to coalesce around what we see described in the community.

[nicolerae]

I cannot tell you how this video changed my life. I have always been "double-jointed" in all my joints. I did "tricks" for friends as a kid like they describe here. I beat the sit and reach records in school, and was a gymnast. I eventually ended up dislocating shoulder as a kid many times, and knee and thumb as an adult. I have flat feet. I had a hernia at age 6. I am tired all the time. I have depression and anxiety. I am 43 years old (still as bendy as I was a kid). No Doctor I have ever seen for any of the dislocations, hernia, depression, etc. has ever mentioned that they might be related. I don't think there is anything I need to do as far as treatment? I work in a very physical job, which I think helps, since the muscle somewhat keeps the "blown out" joints in place. For my whole life, the pain and injuries have been dismissed as me being dramatic. I am not sure how to process this, or where to go from here, but I feel a lot about this.

[AZ]

For 5 years, i was facing depression, anxiety, chronic LBP, until one day a spine specialist diagnosed my symptoms as JHS, and your 50 minutes video is the answer i've been looking for all of these years. So... thankyou, thankyou, thankyouu !!!

[LadyPashta]

If someone HAS PAIN, it is NOT BENIGN!

[Paula_T]

My mom took me to a doctor at age 11. Knee dislocations, inability to get up off the floor unless I pushed myself up onto my hands and knees first. Fell down stairs a lot. Ballet classes. Posture lessons. The doc said if it got worse, I had muscular dystrophy, if it didn't, it was all in my head. I made sure it didn't get worse. I am now 76. I can still touch the floor with straight legs. I still have the pain.

[mammabear]

It took me until 40yo to be diagnosed with ASD, 44yo to be diagnosed with EDS, 45 POTS, and still waiting for MCAS to be official.

I knew most of this 15 years ago. It was just extremely hard to get any doctors who cared or listened. Instead I had Fibromyalgia thrown at me and that was used as a scapegoat for real answers.

I have so many issues and problems that it's difficult for one doctor to understand and even to know where to begin.

ADHD, ASD, EDS, FIBRO, Sleep apnea, migraines, IBS, psoriasis, allergies, chronic pain etc. I've had two bladder slings, rectal surgery, 3 spine surgeries. Not to mention the anxiety and depression etc from living in contact pain. I can't remember being pain free for a day in my entire life.

I don't have much hope for a painfree existence. But it is good to finally be getting answers because i have passed this on to my children. Hopefully they can find things that help before they get worse.

[jodylwallace]

68 and just got assessed this year. Now so much makes sense, but I am going to PT all the time. Finding a PT who is hypermobile savy is so important.

[nima_]

I have hypermobility and I used to be a gymnast, wannabe contortionist, cheerleader and power tumbler. I now have psoriatic arthritis which has injured my spine, shoulders, and MTP joints, and that impacts some of these exams. Knees and elbows still crazy hypermobile. I’m over 40.

[dumbmusorowan]

wish more doctors would keep some of these points in mind, especially the fact that it's not a fully understood thing. i can't get any sort of help with my chronic pain because i'm "just" hypermobile and that shouldn't be such a big problem if i don't have classical eds or marfan's according to the few doctors i've managed to see. being in ireland doesn't help because we really have no specialists for hsd/eds and associated conditions in the country, and our health service as a whole isn't really functional. but even with that in mind just having doctors know as much as is in the video would be a game changer :(

[s.l.g.]

Regarding physical therapy, physiotherapists would tell me that I'm too flexible but gave me standard exercises without any adaptations, it would solve a problem one place but create another somewhere else. I've been trying weightlifting exercises again and again but always ended up with terrible pains which were not muscle-related. Now when I see the slide about exercise therapy I understand why! Thank you for sharing this presentation, I understand now that it is crucial for me to look for help and exercises that are specific for joint hypermobility.

[joylox]

Thanks for explaining why my writing is ugly and painful! I was told by a teacher's aid in elementary that I held a pencil weirdly, but didn't think much of it. I totally agree with it being normalized in families. My dad and I can both pop our hips out (which I recently learned from a doctor is called a subluxation and he was shocked that I could do it on demand), and with relatives with elbows that bend even farther back than mine, I didn't think it was worth mentioning. I have a 4 on Beighton score, but my feet are hypermobile, and I've been going to physio/manual therapy to get subluxations and stuck joints treated for over a year while waiting for a connective tissue specialist. I'm pretty sure there's something going on, my family also has gluten intolerance, POTS, allergies, dental and eye issues, as well as having long arms, so I'm thinking it's hEDS, which 3 physiotherapists also suggested, but physio doesn't look at skin and scars, so that's why I'm waiting.

[karenharvey]

Very interesting. I'm 67 with hypermobility and fibromyalgia, 3 of my children are the same. I've been sea swimming almost every day. Supported exercise (on water) is marvelous and pain management is significantly improved, especially in winter at very low temperatures, however, the clumsiness on land, brain fog, disorganisation and forgetfulness are embarrassing.

[necroticpoison]

For just hypermobility (especially if there aren't significant problems with dislocations etc, just flat foot or abnormal gait / posture), not looking at EDS might be fine, especially if they're older and have had plenty of time to see co-morbidities come up, but if there's POTS, fatigue, pain, GI symptoms, anything like that, not looking at or considering EDS is horrendous practise. CTD's causing blood vessel laxity is not just increased, it's almost absolute, especially or mostly for those that qualify for hEDS/EDS. Yes nervous system problems might be a contribution factor and might be a large one for some, but those that have many of the following: POTS, GI, MCAS, pain, muscle tensity, various malabsorptions, hyper-adrenergicism, hypovolemic form, etc. alongside what is clearly a CTD, should be considered for what it likely is; a distinct CTD, currently called hEDS. Also the label HSD (Hypermobile Spectrum Disorder) is another (although maybe a partly controversial label), and that accounts for a gap (between hEDS and general hypermobility) where many of the above mentioned symptoms are experienced, but with less thoroughness across the mentioned pathologies in presence of them. Also yes it's the responsibility of a doctor to connect the dots, but most are too ignorant and arrogant to recognise when they cannot and to look at say EDS.

[kathleentucker]

Yes! The whole functionality thing is the most important thing to me! I'm 70, still very hypermobile, and movement and pain management is the key for my EDS pain control!