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Were you super flexible as a kid?
I’m curious how many folks would identify as having EDS. I think there is a possibility that the EDS is what actually leads to some of the problems.
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27 Replies
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Wait. What? EDS is a problem. It leads to tons of problems. What do you mean?
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I agree it’s a problem. Everyone I have met that has EDS traits also has Autism or HSP traits now that I recognize them.
Brain-like organoids grown in a dish provide window into autism (medicalxpress.com)
activity & adhesion (see collagen)
Home page – Sensitivity Research
So if 30% of people are environmentally sensitive (or HSP) and 40+30 are standard or low sensitivity:
What if EDS is or is one of the traits that allows/causes the sensitivity?
What if everyone with Autism is HSP (but not all HSPs are Autistic)? Is the Autism our response/coping with the health problems? Is that why some folks “cure” Autism with diet changes? They are still HSP, but not acting Autistic because they aren’t coping with the health problems caused by toxins (that they are more sensitive to) in their diets?
From WikiPedia:
Collagen is not only a structural protein. Due to its key role in the determination of cell phenotype, cell adhesion, tissue regulation, and infrastructure, many sections of its non-proline-rich regions have cell or matrix association/regulation roles.
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I have hEDS – undiagnosed formally however I clearly have it.
As a child I was gymnast and a dancer and this continued into my adult life. I’m now 52. I’ve been plagued by injuries my entire life as a result of it. I didn’t identify as hyper-mobile until about 8 years ago as a result of my yoga practice combined with dancing. I found out about EDS when many within the yoga community began to speak out about hyper-mobility and recurring injuries.
I’ll also share that I have TMJ which I also feel is related.
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This is why most gymnasts and dancers, especially ballet, have to stop because of pain somewhere between 20-40 usually. They are taking advantage of the flexibility and damaging themselves at the same time.
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Oh I was literally tearing myself apart in Yoga. Literally.
That’s where the wheels fell off the bus for me physically.
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I definitely agree that there’s an EDS/Autism connection!
I have hEDS and always thought of myself as “unflexible” in childhood because I could never do the splits or touch my toes. But turns out I’m actually hypermobile after all – just not in those two directions! It took me until my 30’s (and multiple hernias and doctors/PT’s telling me they thought I had EDS) to finally consider it as a possibility and seek out a specialist.
I actually passed the diagnostic criteria with flying colors; I was just so fixated on splits and toe-touches as markers of flexibility (memories of failure in gymnastics class and on the Presidential Fitness Test 😩) that I figured I could never be hypermobile!
(And Valerie, I have TMJ too and I also feel that it’s EDS-related!)
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TMJ – my two thoughts of what to check is joint subluxation (again the tight muscles over compensating for loose joints). I have to get adjusted after every dental visit except for the most recent one at TranscenDentist where the dentist actually checked my jaw joints at the end.
And possible tongue tie. I didn’t know I had tongue tie until recently because the floor of my mouth stretched to compensate and I had to use too much lateral motion to chew. So I got to relearn how to swallow and to use my tongue to move food instead of jaw motion (side to side or front to back – it should only be open/close).
Or tongue position or tongue thrust swallow might also contribute to TMJ.
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TMJ folks, I found this today when checking Tim King’s channel for headache resources: https://youtu.be/iyKYZqv2t7I
He calls his myofascial release method fast and functional. FNFT
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I was pretty flexible as a kid, but I don’t know that I’d identify as having EDS because I don’t have any joint problems… :/
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I used to have random pain because all my joints were just slightly out for so long. The first time Dr Ruch at the North Oakland Chiropractic Clinic adjusted me I felt like I was stepping off roller skates. I felt like I was floating. And now when I have pain I can actually tell what causes it.
Stiffness is also pain (avoidance), and tight muscles compensate for loose joints. Many of my worst joints itch instead of hurt.
If you’ve ever stood with your knees locked and got woozy, if your knees don’t hyperextend then the blood flow doesn’t get blocked. And if your joints aren’t lax you can stand balanced like the homecoming queens in Penelope’s photo. So the asymmetrical stance sunk into one hip is probably an EDS thing?
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Tell me any physical problems and I’ll tell you how it’s EDS.
Headaches?
Gum disease?
Topical anesthetic doesn’t work?
Medications either work way stronger or way weaker?
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I dunno. I’m weirdly healthy and pretty much never have any aches or pains. That may change later (I’m in my 30s). Maybe my body decided that I have enough emotional disorders that I don’t need physical ones on top of it.
My family is Okinawan and they’re a people who are known for their health though. So maybe I have EDS but just lucked out in how it manifests? I dunno.
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Makes me wonder how much nutrition and a healthy microbiome can help mitigate things.
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For those wondering the Beighton Scoring System is what is used to assess joint hypermobility. And yes you can test yourself easily
https://www.ehlers-danlos.com/assessing-joint-hypermobility/
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Interesting. I can’t do ANY of the things on the scale and am also super inflexible (can’t touch my toes, can’t do the split) EXCEPT that when I’m lying on my belly, I can flex back until my toes touch my head. My gym teachers could never believe I was flexible in that direction but hopeless anywhere else. Does that count?
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Yup! I think the scale focuses on the most common joints, but really it’s hyperflexibility in…9 or more joints? So how many vertebrae connections have to hyperflex to bend that way? Pretty sure more than 9.
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I’m bendy. Always have been. Nowhere near as much as my kiddo who was diagnosed with hEDS (&POTS) last year. During the diagnosis appointment I kept thinking, “everyone can’t do that?” Our current doc specializes in autonomic dysfunction and concurs there’s a connection with autism, yet the medical establishment hasn’t exactly figured out what, why, or how. This question reminded me of something I’d read in Disjointed, Diana Jovin (ed). Hidden Stripes, 2020, recommended by the original doc at Mayo. This is from a chapter by Emily Block on Sensory Processing. Happy to share other bits from the book if there’s interest.
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Definitely share more! Collagen is such a major part of the body, but it doesn’t seem like there is a comprehensive list of the impacts a change in the genes controlling collagen can lead to. There should be a “Weird signs you might have hEDS!”
I will try to link later, but I saw an article on research done on the brain organoids scientists have created regarding autism. It mentioned the cells over responding (sensory overload – HSP+trauma=ASD?) and that they had reduced cellular adherence (hEDS???).
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Me and my two sisters have it. We got it from our mom who also has it. Little sis was a gymnast growing up.
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I was in clinic today in the waiting room chatting with other parents. When I mentioned EDS the other parent said “Oh yeah, I have that. I didn’t find out until my daughter was diagnosed.”
And the third parent in the room with us I could see from the finger joints and their kiddo’s that they probably do too.
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There are all sorts of EDS symptoms that aren’t hypermobility-related. It’s a connective-tissue disorder and connective issue is in every system of the body. While some people have very flexible ligaments, others have different lax parts.
For example, my husband and MIL have lax colons so the peristalsis effect that causes the sensation that moves their bowels doesn’t happen on its own. Constipation is apparently one of the most common reasons adult women without nonstop joint issues are diagnosed with EDS. In contrast, my kid and I have the opposite problem. An astute doctor realized that bile is flooding the gut after we eat because the pancreas’ connective tissue isn’t functioning properly.
When my kid was about 6yo we noticed periodically his eyes would spin like a Loony Tunes character. The eye doctor suggested we note if this happened during growth spurts. Sure enough. She said that just like when a women’s hip joints loosen for childbirth, when kids grow the optic muscles can loosen. A decade later when we told this to the EDS specialist he said that was our earliest sign and that this doesn’t happen to many kids, just those who likely have underlying connective tissue issues.
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Yup! I recently was trying to trace if/how collagen is involved in cellular adhesion, because then basically ANY tissue in the body can be affected by it.
And thanks for sharing, I haven’t come across new EDS info in ages! Who was the doctor that mentioned the optic nerve thing? I immediately thought of my kiddo needing convergence therapy and my brother having double vision. I think my brain just does the “toss the input from one eye” thing so I probably have convergence insufficiency too.
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The eye doc was just our regular optometrist in rural Virginia. When we’ve mentioned this to our super specialists at Mayo and MHealth, they’ve concurred it’s related yet both said it’s not something they see very often, probably bc their patients are past that growth stage.
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Oh geez…now I think I’m pretty sure my daughter has EDS. She’s been showing signs of being very flexible recently and she keeps putting her self in positions to see how far she can go. Also – recently diagnosed by the pediatric optometrist with convergence issues (again – she did in first grade also-4 years ago). The dr called it functional vision issues – 2 things: 1. Her eyes aren’t working as a team. and 2. Her brain and eyes are not cooperating. Reading is still a major struggle for her in 5th grade. She will start vision therapy mid January to correct this. Does having EDS mean it’s not correctable? Or that it will reoccur? Need more information. Ugh.
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My experience has been that my kiddo has not had a relapse since finishing therapy. Maybe try a new therapist to see if the first time was not actually complete? I think I might have issues as well, but my brain just tosses out half the visual info so I don’t notice it until I try to do the exercises.
Generally, with EDS you need to strengthen muscles to compensate for the joint laxity. I’m just starting to read through the Muldowney Protocol book.
If I were in your position, I would encourage my kid to exercise more and stretch less. I still regularly tell my kiddo to reposition when I notice them in a W sit.
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Yes! Ok, either I need to find a Dr. like yours in CA or just check with insurance if I can use your doctor. I don’t like it when I know more about EDS than the Dr. does!
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Does anyone have advice for where to start with finding treatment/support for EDS (or hypermobility/low muscle tone more broadly)? I am starting to get concerned that these issues will get worse as I get older. I am 36 and noticing a lot more clumsiness, muscle weakness, injuries, and related issues. I’m not sure I fit the EDS diagnosis exactly but I definitely have autism-related physical challenges.