Libby Hinsley, P.T. discusses her personal journey into yoga, physical therapy, and her eventual diagnosis with Ehlers-Danlos Hypermobility Syndrome, all of which led to the writing of her new book, "Yoga for Bendy People."

Libby's anatomy membership for yoga teachers can be found at: www.anatomybites.com

The Ehlers Danlos Society website has great hypermobility Resources: 

• www.ehlers-danlos.com 

Hypermobility-specific podcasts: 

• Hypermobility Happy Hour
• Bendy Bodies

The premium version of this podcast, in which Leslie and his guest review and analyze a video recording of a private session is available to subscribed members of The Breathing Project.

Okay. Recording is in progress.

Hi Libby.

Hi, happy to be here.

Yes. I'm happy that you're here too.

We, you know,

one of the,

this is the first recording I'm doing for this new podcast,

just so you know,

and you're one of the first people I thought of talking

to, because the last time we had a lengthy chat about

this very topic in the back of my head,

as we were talking about all of this stuff that you

specialize in,

it was like,

other people need to know this information,

this, this would be a great conversation to share.

And so now we get a chance to do it.

And so congratulations on being the premier guest on this new

podcast, which I'm calling Clinical Corner.

That's awesome.

That makes it even double special to be here.

Okay. Yeah.

And as I said in the email that I sent,

you know,

this, what I'm aiming for here is the opposite of dumbing

things down,

because we're aiming at people like us as our audience,

people who work one-on-one with other folks,

whether as a yoga teacher,

a yoga therapist or yoga educator,

or just a movement person in general,

because I think there's a,

a very wide swath of interest in the sort of things

that we'll be talking about.

And so we can really kind of get into the nitty

gritty and talk shop a little bit,

which is going to be fun.

Great. Yeah.

So why don't you just introduce yourself and just tell people

a little bit about how you came to do what you

do and,

and have this particular focus.

Okay. Well,

I'm Libby Hinsley and I am,

I've been a yoga teacher since 2005 and I'm in my

first, you know,

early years of teaching yoga.

Of course,

I got really interested in people's quick questions after class that

they always have such as,

like, why does my shoulder hurt?

Why does my hip hurt?

And I was like,

I have no idea,

but I'm interested in that stuff.

And so that all led me in to go to go

to physical therapy school.

So I've been practicing as a physical therapist for about 10

years and training teachers for about that same amount of time

as well.

So in the background of all that,

of course,

was just my life and in my life,

especially in my yoga,

practicing life,

I had chronic pain and injury going on,

sort of in the background and had all the classic sort

of yoga related injuries that so many yoga practitioners have.

And I had a long history before that to have shoulder

injuries, especially rotator cuff injuries.

I was like competitive tennis player for a long time.

So anyway,

I had shoulder crazy shoulders,

sacroiliac, joint pain,

hip pain,

knee pain,

foot pain,

sort of like all pretty much head to toe pain,

but especially ...not

the kind of pain a young person should be having ...Definitely

in fact,

the decade that I had the most pain was my twenties.

Wow. Yeah.

And, and that was the decade.

I got more heavily into yoga practice.

And unfortunately I was drawn to types of Asana practice that

were not right for me at all.

I mean,

they, you know,

and there's nothing necessarily categorically wrong with any style of asana,

but the question is,

is it the right one for this practitioner?

And for this practitioner,

what I was doing was not the right practice.

So it was okay.

There's an interesting thing because people get drawn to two things

based on what they're sort of already able to do to

some extent,

and that can end up being exactly the opposite of what

unique is this new exacerbate,

some of the,

the, the imbalances that you may already have in your system.

Yes. Well,

exactly. I think we're drawn to the things that probably feed

our existing dysfunctions initially anyway.

And so that's what I,

and I was moving really quickly and,

you know,

a lot,

so it's just kind of Ashtanga Vinyasa style,

fast paced,

hot stuff,

stretching as far as possible.

And, and so I didn't really have a great understanding of

my joint hypermobility at that time,

but over the years,

especially as I got into physical therapy and even more so

when I started treating injured yoga practitioners,

which is primarily who I see at this point as a,

as a yoga therapist,

PT, you know,

within my private practice.

And they all had the same stuff and it turns out

they all have the same stuff I had always had too.

And, you know,

luckily for me,

my chronic yoga pain and injury nagging aches and pains,

the sacroiliac joint,

the high hamstring strain.

I mean,

I had those for 10 years every single day for 10

years. And that started to turn around when I got into

a different way of practicing Asana,

which is when I discovered the Viniyoga lineage.

And that was in 2008.

When I went to study at Desikachar's place in Chennai India

for a month,

you know,

I did their immersion and it just changed everything for me.

I just hear about that.

I'm always interested in sort of the entry point for that,

because it,

back then,

it was a little more obscure than it is now.

Well, I had no idea what I was getting into at

all. When I signed up,

I had no clue.

I just had read a couple of Desikachar's books in my

teacher training,

you know,

my initial training in 2004 and I really loved his books.

And so I looked into,

and I thought,

this place sounds awesome.

I was considering going to physical therapy school.

And I was reading about kind of how they deal with

one-on-one clients and assessments.

And I thought,

Ooh, this is like a really neat,

well, it was yoga therapy,

right? And that's not the training I took there,

but I just was interested in what they were doing at

the center.

And so when I showed up there,

honestly, that first week or so of the month long immersion,

I hated it.

Coming from your background as an athlete and very active style

of practice.

I can see how that would be kind of a,

a shock to the system,

the way they practice there.

It was a real shock to the system.

I was like,

what are we doing?

This is so boring.

And, you know,

so there was that initial reaction,

but then about a week into it,

I discovered,

wow, something magical is happening here in my body and my

breath. I've never experienced asana in this way at all.

And it turns out I totally fell in love with it

After practicing.

I would guess The thing is that my ...

everything changed for my physical injuries and pain related to asan

practice. And,

and those things haven't really bothered me since.

I mean,

it took me a while to really integrate the new ways

of practicing and to really change my habits in yoga.

And even when I was,

would go to attend a class,

you know,

making those modifications that I needed and that took a while

to do,

but once I did,

you know,

they just haven't bothered me since.

And then a lot of other things happened in my life,

like strength training and things like that that have really supported

my body too.

So that's how I got into that lineage of yoga and

just been interested in it ever since Now,

you did the PT training after you studied with the KYM,

and I'm curious if,

as part of your education to become a physical therapist,

this whole issue of hypermobility was,

was covered as a,

as a topic.

Well, it's really interesting that you ask because it really wasn't.

In fact,

you know,

so a couple of years ago I was finally diagnosed with

hyper mobile Ehlers-Danlos syndrome,

hypermobile EDS.

And when I learned about EDS and hypermobility syndromes in general

in PT school,

I would have never,

in a million years thought I could have something like that.

We'll have you sitting in class doing this with your thumb

to see if I did.

And, and honestly,

I was always like the weird example in PT school of

everything, you know,

and the professors would be like this isn't normal for an

adult. And,

you know,

but that's kind of as far as it went.

And when it got into really kind of talking about more

pathologies I had in my mind that someone with EDS basically

couldn't walk without a mobility aid,

or they would be dislocating every joint all the time.

That's sort of like I had that really extreme view in

my mind.

That's not the case at all,

of course,

and people who have hypermobility syndromes are all a spectrum of

impairments and disabilities,

but I never really got a clear picture of what it

meant to have a hypermobility syndrome.

And neither does anyone probably who goes through PT school or,

you know,

physician training.

And that is one of the biggest problems for this whole

situation. And that's what I wanted to focus on here because

as yoga teacher,

educator therapists,

that where we designate ourselves,

we are really on the front line of being able to

spot this and recognize it for people because it is so

often overlooked in the medical realm.

And I know personally from workshops and other things that I've

taught, having been able to spot people and say,

Hey, have you heard of hypermobility,

Ehler-Danlos, whatever.

And people are like,

no. And then,

you know,

you say just a little bit about it.

And all of a sudden the light bulb goes off in

their entire life starts making sense.

This is coming from a non-medical person.

This is coming from just someone that's in the front of

rooms, where groups of people are moving and you can spot

right away when something stands out as being beyond the range

of what normal range of motion should look like.

Right. It's true.

I mean,

there's so much to that because the problem is so many

yoga teachers don't know what normal human movement should look like.

You know,

just because they don't have a lot of training in that.

And because they're used to looking at people who move more

than normal,

you know,

because I think yoga,

you know,

hypermobility is so over-represented in yoga populations.

So yoga teachers start to think that it's normal to move

that way.

So they're looking out at a room and the very bendy

ones they think are the normal ones and the,

the normal ones they think are the,

the tight ones.

You know,

I've never personally thought that,

but that's the only because I started off with a background

in things like biomechanics and sports medicine,

and, you know,

you know,

just a little bit more of a,

of an anatomical basis to what I was seeing,

but in a typical class where people are involved in what

I tend to call the unbridled pursuit of unlimited flexibility,

then you're like a star pupil and you're often demonstrated on,

or with you become the teacher's personal Gumby toy.

And a lot of injury can happen that way.

It's true.

It's true.

And so I agree that yoga teachers are in a unique

position to recognize things and to help people understand their bodies

better. And there's like a fine sort of needle to thread,

I guess,

in that,

which is to not be alarmist about it.

I mean,

I think that's one thing to kind of bring out in

our conversation is it's okay if someone has hypermobility,

they're not going to literally fall apart on their yoga mat.

And I think a lot of people have so much concern

that they're going to break and that they're highly fragile and

this type of thing,

I think we need to temper that,

but also recognize that this can be the thing that helps

someone make sense of their entire life.

So, and that was the case for me too.

It is the...the

unifying principle,

basically of all the things in my life that I never

thought were related because we're not just talking about bendy joints

and all the musculoskeletal fallout that happens from that.

We're also talking about,

I mean,

that's just the tip of the iceberg.

I want to get into that because there is a long

laundry list of things that,

and we just,

in our previous conversation,

we discussed this,

that clusters around this diagnosis.

And we'll get to that in a minute,

but I'm just curious,

do you recall,

was there a single moment when the light bulb went off?

I mean,

do you have,

was it a sudden revelation when it all kind of came

together and you were like,

oh wow,

this explains my life.

Well, it was the moment I got the diagnosis,

but, but leading up to that,

it was several years of progressive sort of dawning realizations,

both being around a good friend of mine who has Ehlers-Danlos

syndrome. And we were teaching together on chronic pain.

And that's another area that I specialize in the neuroscience of

pain. And,

and those often are the same,

the chronic pain and the hypermobility people are usually very commonly

the same people.

And so I was learning a lot just in my clinical

practice. It just kept on sounding so familiar,

you know,

like, oh,

that sounds a lot like me and I just kind of

kept connecting these different dots.

And it was after the birth of my second child in

2016, that my health really fell apart in a bigger way.

And I'd always had all kinds of chronic weird stuff,

but it was not until then that things really came apart.

And I started having more serious symptoms,

cardiac symptoms and digestive problems and more pronounced,

you know,

multi-system involvement.

And that's when I started seeking medical stuff.

I went through the whole gamut that people always go through.

I saw all the specialists,

I got gaslit repeatedly,

just like every,

you know,

this medical kind of gaslighting that happens when physicians don't understand

what's going on and they don't know about the condition.

And they're,

they're very dismissive and it's you,

it's not intentional to be dismissive,

but that's what happens to people.

And so I went through all that.

So you go through your entire training as a physical therapist

and the clinical work you do.

There you go through a whole range of medical exams and,

you know,

specialists, and it's still not coming together for anyone to say,

Hey, we know what this is.

So who finally figures it out A geneticist.

So I finally,

I downloaded the diagnostic criteria for hypermobile EDS,

which is a clinical diagnosis.

You know,

we can talk about EDS a bit more,

but it's the only one of 14 subtypes.

It doesn't actually have a blood test to confirm it.

It is made by a clinical diagnosis,

a checklist of,

of attributes.

And I downloaded that and I just,

This, this,

and this symptoms or histories or whatever,

then it qualifies,

but it's not like they're running a blood test or checking

your DNA,

or, you know,

That's Not a lab test.

Exactly. Unless they need to rule out a different type of

EDS because all the other 13 types do have a blood

test, a molecular marker associated with them.

So you could,

you know,

rule those out as part of the confirmation,

if they thought that was necessary.

But there's research underway to try to determine what is the

genetic cause.

Like, could we pinpoint it and do a blood test for

it that is underway.

It's not well understood for hypermobile EDS and some of the

reasoning for that,

or the hypothesis for that is that it's complicated.

That there's a lot going on that it's not just one

easily explained genetic alteration,

but it's a whole host of them.

It has to do with collagen.

It might have to do with college and producing cells,

their behavior,

the fibroblasts behavior,

and their inability to contract,

to create tension across the tissue.

It may have to do even with the genes that regulate

inflammation. So it's just more complex With whatever genetic predisposition leads

to it and never develop it because there's so many factors

that can,

that can cause the expression of these genes in your life.

And so it is it's complicated and you can have EDS

and not be hyper mobile.

Well, yes.

Or you could,

you could have EDS.

Yeah. It's so,

oh, this just looks like it's a tangled ball of yarn,

you know,

and some people,

even with EDS don't appear hyper mobile because they may have

so much compensating muscle tension that their flexibility is really limited.

And it's me in our first conversation,

it's just someone who actually has hypermobile EDS can not,

will not necessarily self identify as being flexible.

They feel the tightness that they're using in their nervous system,

in their musculature to literally hold their joints together.

Yeah, exactly.

They feel tight and they are tight sometimes and they can't

touch their toes.

And so there there's all kinds of problems with the standard

sort of hypermobility assessments that we use because they don't screen

for that.

Cause you could be completely bound up around your loose connective

tissue and not exhibit excessive range of motion.

And, but you still have it.

Exactly. And sometimes you can tease that out through passive versus

active range of motion.

But so,

so all of that is to say,

you know,

the hypermobile EDS diagnosis is clinical.

And so in my sort of story of my coming to

this realization,

I just downloaded it.

I tested myself,

I looked up what all the things are.

I looked at my body,

I did my,

all the things.

And I was like,

oh, looks like I have this.

And so I took it to my primary care doctor who

was wonderful,

but she doesn't know about it,

but she said,

Hey, it looks like you found something here.

I'm going to refer you to the geneticist.

And, and that's often the pass-off is to a geneticist who,

and he was,

he knows all about it.

And so I had that visit with him and I write

about it in the book.

And he said,

yeah, this basically is,

sounds like a classic case of hypermobile EDS,

you know?

And I was just like,

and that was the moment I was like,

ah, the relief and the validation was really surprising.

Honestly, I didn't really expect it to be that powerful Really.

And this is where someone with a heavy duty clinical background

and education,

and I'm thinking of people that have none of that who

are suffering with this,

their entire lives and,

and what a profound life altering realization it can be when

they're finally handed an explanation for everything,

not only what they've been experiencing,

but it tends to run in families.

Does it not?

I mean,

you have to look at the,

at the,

the, the family history and,

you know,

relatives who have a similar body types and symptoms.

Exactly. Yeah,

exactly. And there's always,

you, even for someone like me who had studied it a

lot, studied chronic pain a lot,

and you see people with hypermobility clinically all the time.

There's always that just nagging thing.

Like, well maybe what I'm experiencing is normal.

Maybe this isn't that big of a deal.

And there's always that little bit of self doubt.

And what's interesting is that I think that's even more common

in people who have hypermobility because they have a hard time

knowing how they feel and getting clear about like literally physiologically,

how they feel and kind of creating,

establishing a clear boundary about where their stuff ends and somebody

else's stuff begins.

So they're kind of impressionable,

I have to say,

and it's kind of weird,

but there's an issue with boundaries there that's really more physiological

than anything.

I don't want to paint it as like a psychological defect,

but it really is inherent in the difficulty with proprioception and

interoception Well,

that's a great segue cause that's,

that's on that list of all these associated issues that go

along with it.

So there's difficulty with proprioception,

meaning the,

the actual mechanisms,

the physical mechanisms,

the mechanoreceptors that live in the connective tissue that deliver information

to your nervous system about where your joints are in space

are affected by this.

And so you don't have that information being delivered to your

nervous system.

Exactly, exactly.

Those mechanoreceptors aren't stimulated as easily because the connected tissue is

floppy and it needs to sense tension for that stimulate or

something. It's got a sense,

some sort of mechanical event,

some mechanical reality.

That's what those sensors are looking for.

And they don't get the information until you get to your

end range.

And that is,

what's so tricky.

A hypermobile person can't really feel anything without,

you know,

some training and then we can learn,

but it's hard to feel anything about where we are in

space, unless we're at an end range.

And then those mechanical receptors,

finally, there's tension across the tissue.

Finally, they're stimulated.

And they're like,

ah, here we are.

You have a body here it is.

But before you get there,

you're just like,

ah, I don't know where I am and it's really hard

to feel embodied,

But that's,

that's a catch 22,

isn't it?

Because to get that sense of where your joints are,

you're actually putting yourself in a range of motion that's going

to not help your problem and possibly make it worse because

you're at your end range.

Exactly. So especially for people who subluxate or dislocate and that's

where it's going to happen,

you know,

and people who are,

are, have strains and sprains,

that's where it's going to happen.

And so it is problematic and the trick is backing away

up and learning how to sense.

I mean,

that's really the project with hypermobile people is teaching them how

to sense their bodies in a new way.

That is far more subtle than anything they've experienced.

Yeah. And we're going to get to that,

the actual clinical application of some of this information in the

second half of our,

of our talk,

which by the way,

will be available to subscribers to putting this.

I see that's the,

that's the little carrot at the end of the stick there.

It's like,

how do you put this in practice?

And we're actually go to the mat and show some of

this stuff,

which is really important.

And I just had to figure this out on my own

without knowing this information years and years ago when I had

hypermobile people in class and I was like,

okay, so you can go there.

Great. What happens if you pull back and work at something

that doesn't feel like an end range,

it's really,

really difficult,

you know?

And actually I'm always,

I was always telling the story about how well the stiff

people like me have it easy.

You see,

you know,

we're going to hit our end rings all the time.

And it was like,

okay, I'm going to develop some skills around dealing with that,

like holding,

releasing, breathing.

And so the boundaries that I'm hitting up against are very

clear. And then I developed skills of working with those boundaries,

but establishing a boundary that your body isn't telling you should

be there,

that you're choosing to,

to respect is much more difficult,

both physically,

because you're having,

you're having to engage so much muscle effort to keep your

joints from seeking that end range.

But also it's emotionally challenging too,

to say,

okay, I'm just going to stop here because I'm choosing to

stop here and work at this place.

And it's,

it's, it's tough.

It's, I've seen people really struggle with it,

but it's so,

so necessary.

So what else is on this rather long laundry list of

difficulties that people have when they have now...by

the way it's,

can we add to this?

To, to the Ehlers-Danlos hypermobility things like Marfan syndrome,

which also affect connective tissue stability?

It's, it's a,

it's a somewhat related diagnosis,

isn't it?

Yeah. So there are a number of conditions that feature hypermobility

as one of the aspects of Marfan syndrome is one of

them and their osteogenesis imperfecta would be another one and Ehlers-Danlos

are 14 types.

So I would say the most common of the big umbrella

of hypermobility syndromes would be the EDS syndrome,

the Ehlers-Danlos syndromes,

multiple of them.

But the one that is most common within that is the

hypermobile type.

And it's confusing that it's called that because all the types

of EDS generally feature joint hypermobility,

but most of them are more rare.

Some of them are ultra rare and the hyper mobile type

is not rare,

but it's prevalence as hard to determine because it's so often

not diagnosed or it's misdiagnosed.

And there's a sister diagnosis.

I want to mention too,

just to confuse things a little bit more,

which is hypermobility spectrum disorder.

Okay. So,

so let's go back to that checklist.

I was talking about with EDS,

the hypermobile EDS diagnostic criteria,

let's say somebody has what I call symptomatic hypermobility.

They have joint hypermobility and they have symptoms related to it.

They've got pain,

joint pain,

dislocations, subluxations,

chronic fatigue.

They've got all kinds of mental health,

digestive, all the things we'll talk about in a second,

but they don't meet those criteria.

Well, that's when someone will be diagnosed with hypermobility spectrum disorder.

And the thing is,

is that that is not a less or lesser diagnosis than

hypermobile EDS.

It is simply a different diagnosis.

And that's what I want to emphasize for people interested in

this because that's not well understood by anyone even,

you know,

in the medical field or,

or elsewhere that the hypermobile EDS diagnostic criteria really was developed

to support genetic research.

And so it wants to isolate and we're looking for the

genetics here We are in our study are not based on

these criteria.

So then the genetics behind it Doesn't Mean that you're suffering

less from it or that the treatment is necessarily going to

be very different to help you.

But it's,

it's either you're,

you're in this sort of genetic pool that we want to

understand, or you're not Exactly.

So it's sort of like genotype versus phenotype in a way

here's the,

the hypermoblie EDS.

And here's something that looks just like it and experts in

the field.

They just put it all together.

And that is one lump thing.

And clinically we had treated exactly the same and those people

are basically the,

I don't differentiate between those two diagnoses clinically at all.

And so that's something to be aware of because a lot

of people say,

well, I've just got hypermobility spectrum disorder.

It's not like heavy EDS,

you know?

And, and so it's just assumed that it like EDS is

really scary and really severe.

And it,

it isn't always,

I mean,

I have it,

you know,

and I'm pretty high functioning person.

What about your kids?

Are you,

are you,

you know,

concerned about,

are you testing their joints just to make sure they're,

you know,

not exhibiting the same ....oh,

they definitely are.

I mean,

especially my younger child or she's super Gumby now there's no

doubt about it.

She was kind of,

you know,

she was never behind in motor development,

but she got diagnosed with mild hypotonia as a baby,

but it's,

that's probably not the right diagnosis.

She was just floppy.

Cause her joints are floppy.

You know,

it wasn't a muscular problem.

It was just,

she was a little bit floppy,

but she's,

she's actually very athletic and very physical,

but she definitely has what I have,

you know,

and the older daughter is hard to say she doesn't exhibit

it as much so Well how,

how fortunate that she'll be able to grow up,

understanding this from the get-go,

from your experience and avoid the pitfalls that you fell into.

Yeah. And that's one of the motivating factors for me to

get that diagnosis made official was so that,

you know,

if my kids have issues down there,

they don't have to jump through hoops or wonder for 20

plus years,

you know,

that I was seeking and wondering what is going on with

my body.

Why is it like this really?

Since I was about 20.

So I'm then I'm 45 now.

So they won't have to do that.

This is feel,

skip that.

That's, that's great.

And that's why this is all about the education,

you know,

getting this information out there.

And that is why I am so excited that your book

is soon to hit the shelves.

Isn't it?

It is.

So it'll be hitting the shelves of the very end of

may or early June,

2022. So it's in layout now.

It's pretty much finished on its way.

And it's got a nice blurb.

I think that I wrote for it,

It'll be on the back cover And,

and, and the book is called "Yoga for Bendy People."

Of course it is.

And that's the perfect title.

Yeah. Yeah.

And so in the book,

the first part is a bunch of background,

all the stuff we're talking about laid out,

you know,

so that people really can understand what is hypermobility by itself.

And then what is hypermobility syndrome?

Because, you know,

someone can be hyper mobile and be just fine.

So it's not the case that if you see someone in

your class and they're very,

you know,

they've got a lot of range of motion it's,

we can't jump to a conclusion that there's something wrong with

them. You know,

they don't want to pathologize that,

but because hypermobility can be caused by a number of things.

But a lot of people who have hypermobility is,

is caused by an underlying genetic difference that affects their connective

tissue. And that's when it's more likely to be symptomatic.

And so the book goes through all of that background even

goes into a chapter on connective tissue nitty-gritty to get really

understand tissue mechanics.

And how is the bendy person's connective tissue different.

It is different stuff.

And to help understand what's underlying that and paint a big

picture. And then of course I get into,

you know,

some suggestions for how to approach a yoga practice that is

supportive for this person.

Not only that avoids injury,

is it something we want to do,

but it's far more interesting to me to talk about how

can yoga actually help them?

Well, like the shift you experienced that the KYM all of

a sudden there is,

there's a way of thinking about what I'm doing in my

practice, that on the one hand isn't going to exacerbate,

you know,

my situation,

but will actually promote more health,

more integration and,

and overall,

just more clarity on what I'm actually to accomplish with a,

with a practice.

Did you have,

when you were writing,

I'm curious,

did you have mostly yoga practitioners in mind or yoga teachers

or was it both?

So is the audience pretty much both of those?

Yep. Pretty much both of those.

And that was early on.

One of my editors was like,

you have to choose an audience.

You know,

it's either you need to dumb it way down for the

yoga practitioner or it's good as it is for the yoga

teacher. And I was like,

eh, I'm gonna go kind of go with it.

I'm going to try to explain everything as accessible way as

I can.

But here's the thing about people with hypermobility syndrome,

even if they're not yoga teachers,

they need to become experts at their condition anyway.

And so this is a particular population where I'm okay.

Challenging them a little bit if,

if they're challenged by it,

because their doctor doesn't know what they will know after reading

this book for the most part.

Yeah. And that's,

that's a pretty remarkable statement.

Okay, let's get into some numbers.

Now, what percentage of the general population is it estimated has

this or these kinds of issues Up to 20%?

It was like the highest estimate that I've seen.

And again,

the prevalence is very hard to pinpoint,

but when you lump together hypermobile EDS with hypermobility spectrum disorder,

it is thought to be,you

know, 10 to 20% of,

of people.

And now that's general population.

So let's take the yoga the practicing population.

I was going to say that what percentage of people that

show up to a yoga class are going to have this

higher, Higher,

and then what percentage of people are going to feel so

successful at yoga that they decided to become yoga teachers?

Yeah. Yeah.

Just scan,

scan through Instagram and make your estimate based on what you

see there from the,

you know,

the yoga images who,

who are actually getting,

if not full-blown careers are,

are getting a lot of positive feedback for the extreme things

their bodies can do,

who are always looking for the next,

most extreme thing they can photograph and put up there and

get more followers,

you know,

it's, it's like we're in this sort of echo chamber that,

that really can exacerbate people's tendencies to push themselves in ways

that are not necessarily healthy.

It really can.

And unfortunately it doesn't just do that,

but it also intimidates all these would be practitioners,

right? Like for whom yoga is awesome and could really be

great for their life.

And then they feel like they're not flexible enough because they

see all this imagery.

So it does both of those things,

both of those are damaging.

So yeah,

the, the book is really,

I would say primarily targeted to teachers,

but absolutely appropriate for practitioners who think they might be bendy.

Yeah. Well,

as I think I said in the blurb should be required

reading for every teacher training program,

for sure.

Okay. So 20% of the population certainly higher than that in

yoga environments.

So some of the other thing I was fascinated to learn

some of this,

which I hadn't heard before in our previous conversation,

let's just go through the list of difficulties people have,

that are associated with this.

And some certainly mechanical,

physiological, emotional,

you know,

nervous system.

So just kind of rattle it off for us so people

can know what,

what this affects.

Yeah. So as far as the body goes,

almost universally sacred iliac joint pain,

that's the top of the list,

joint dislocations,

subluxations headaches,

but beyond sort of the mechanical musculoskeletal we've got anxiety would

be the biggest one anxiety and panic disorders.

We've got some brain anatomy differences that have been documented that

help explain the prevalence of anxiety and panic disorder and a

hyper aroused sympathetic nervous system.

So that is like probably the biggest one.

And I think one of the most relevant for yoga practice,

because yoga is so potentially so great at helping people learn

to manage their nervous systems.

So, so all the fallout that comes from a hyperactive sympathetic

arousal, we've got smaller parietal cortex where the somatic sensory area

is. So the body map that helps explain that lack of

proprioception as well,

not just from the mechanoreceptors side of things,

but also from a actual brain body mapping perspective.

We've got dysautonomia,

that'd be another big umbrella.

One dysautonomia just means dysfunction of the autonomic nervous system,

which partially we could explain what that heightened sympathetic arousal.

That's one expression of dysautonomia really,

but then there's another common one that is just dizziness and

people get dizzy really easily.

They have low blood pressure,

often low blood volume.

And so what happens in the bendy body is that their

vessels are saggy.

If you think about the connective tissue in this body and

just think of it as saggy,

think of it as floppy.

Well, the blood vessels are too cause and they're a little

saggy. So blood pools in the lower body.

And in order to get that blood pumped to keep it

pumping, we have to turn up our sympathetic nervous system and

the heart rate goes way up,

right? And so there's this because otherwise it's just,

you don't get cerebral blood flow literally,

and you don't get good perfusion up here.

And so you get all the brain fog and the chronic

fatigue and all the things,

and you don't even get good profusion into these muscles.

They call it the coat hanger pain.

Okay. The neck and upper traps.

They're just like on fire for people so much.

And they're literally not getting good blood flow because of this.

Well, let's call it orthostatic intolerance.

It's so hard to be upright because of that,

the saggy vessels,

the blood pooling,

the low blood pressure.

And then that leads to the high heart rate and that's

called orthostatic tachycardia.

So P.O.T.S.

(Postural Orthostatic Tachycardia Syndrome) is a really common one and that's

relevant for yoga too,

in terms of positioning,

you know,

in my yoga practice,

I practically never stand up.

Yeah. Well also,

you know,

it's interesting cause in this,

the last couple of years in the age age of COVID,

we were hearing,

we're hearing a lot about this dysautonomia and the P.O.T.S.

as being a by-product for many people of having had COVID

and the long COVID effects.

And I would imagine for someone with hypermobility who had COVID,

who, you know,

is getting hit with this double whammy,

it's gotta be really,

really disruptive to just about every aspect of life.

Yep. Yeah,

exactly. A lot of things that are coming out of long

COVID are very reminiscent of what people deal with with hypermobility

syndromes, chronic fatigue,

P.O.T.S. dysautonomia,

and even,

I don't know about mast cell dysfunction,

that's a common one to mass cell activation disorder where your

mast cells,

MAST mass cells,

they're part of your immune system and they release histamine and

your response to allergens.

Well, they just are releasing histamine all the time in people

with mass cell activation problems.

And so people break out in hives,

they're itchy,

they're allergic to adhesives,

you know,

and that's really common sometimes with heat and exercise will trigger

that for people.

And they're like,

oh yeah,

I am itchy all the time.

You know?

And they never knew that was part of it.

So, so those are some things there's a higher prevalence of

all kinds of other diagnoses.

So for example,

people who have fibromyalgia,

some studies show that up to 70 or more percent of

people with fibromyalgia diagnosis have joint hypermobility.

So that's like a real close correlation.

And I think that speaks to the chronic fatigue and also

the muscle pain,

the chronic muscle tension that is trying to compensate for joint

laxity. And trying to hold you together.

And also that's responding to that heightened sympathetic arousal.

That's always in the background,

it's just always in the background and it's just like that.

So, so fibromyalgia is a really common one and then anxiety

and panic disorder I mentioned,

but also neurodevelopmental disorders like autism,

spectrum disorder,

Tourette syndrome,

even ADHD.

Those are all very hypermobility is very overrepresented in those populations

to Right.

Well, the important thing to remember for brain development is that

without certain kinds of stimulus,

at certain key stages of development,

certain brain centers don't develop well or fully know.

And if you're not,

and you said the parietal region,

you know,

where you're processing proprioceptive information,

whatever, if it's not being delivered,

if you're not getting that stimulation.

And, and as you said,

you can see this as differences in actual brain structure.

When you look at someone's adult brain,

you're like,

oh, you know,

like if someone never got spoken to and didn't experience language,

you see their language centers wouldn't develop,

you know,

and it sounds like we've got a similar thing going on

with this lack of feedback that people are getting from your

joints. And also you mentioned interoceptive ....

as well,

because it's not just your joints.

It's, it's the connective tissue that all of these sensors live

in, in your,

in your guts,

in, in the insides of your,

of your body.

And, and that leads me to something else.

You mentioned,

talk a little bit about the,

the, the historic kind of emotional relational tendencies that people with

hypermobility have in terms of they're over represented in,

in trauma.

And you said,

you mentioned boundaries briefly earlier and you know,

how does that feed into it?

Yeah, so it's just hard to establish boundaries.

I mean,

that's probably hard for anybody,

but it's literally so hard to establish physical movement boundaries in

this person.

And, and the thing about kind of more emotional and relational

stuff, I think it all points to interoception.

And so the funny thing about interoception,

which is the ability to sense physiological state sort of inner

sensations, and those signals are actually turned way up in the

hypermobile person.

So they have it's louder.

It's like the volume dial on interoception is really loud.

And they're bombarded with inner sensations all the time that they

have trouble understanding and differentiating and discerning and interpreting.

So they call that interoceptive sensitivity.

And so they become,

you know,

it's like a lot,

they're just very distracting.

So they're just,

they're the people who can very much feel their heartbeat very

easily, loudly all the time.

And they're likely to be very empathetic.

I mean,

in fact,

there's actually some research that looks at people who can feel

their heartbeat are more empathetic.

People like more generous and more caring,

things like that.

It's very interesting.

But when you think about interoceptive signals and you think that

emotions changing emotions are interoceptive signals,

they are inner sensations and we have a hard time understanding

them and interpreting them.

Then it actually is easier to describe why it's hard for

people to know how they feel.

It's like,

how do you feel about this?

And like,

I don't know,

it's just overwhelming.

I can't possibly,

you know,

it's just hard to really tease through those sensations and that

comes into play in relational ways,

for sure.

Cause you need to really understand who you are in order

to understand how to communicate who you are to someone else

clearly and with kindness and,

and all of that.

So understanding who you are really is sort of the crux

of yoga,

I guess one of them.

And, and I think that's one of the big ways yoga

can be so wonderful for people with hypermobility syndromes is just

that helping you to go in,

go in discern,

discern, understand,

interpret all the things so that you can be in the

world, be clear about who you are,

where you end,

and that person begins and then have that,

you know,

interaction that can be more meaningful and more fulfilling and less,

less likely to get sort of drug around by someone else's

agenda, basically That would never happen in a yoga situation.

Would it,

You see here's where here's where like even a philosophical grounding

in, in certain ideas becomes important because everything you're describing from

a, if you just look at it a little bit fuzzy,

it's like,

isn't that what we're aiming for?

Don't we want to just merge with the universe don't we

want to just,

you know,

feel the boundaries dissolving between our own individual identity and the

rest of the universe.

I mean,

you know,

you, you know,

the language that gets put out there with is these kind

of fuzzy wuzzy understandings of some of the ancient philosophies and

you can see how easily someone can be drawn into a

very cultish kind of a situation where whatever abuse or lack

of boundaries they had in their,

in their background are just going to get retraumatized.

We see this happen,

those so much in these,

in these cultish situations that often develop around yoga traditions.

Exactly. So it was really,

it, it always has to come back to developing an internal

locus of control,

which is totally antithetical to a cult situation.

And Let's just say a strong ego,

Right? That's true.

Yep. Yeah.

And you know,

as far as the trauma goes,

it's sometimes I heard someone say once that hyper mobile people

live as though they were raised in a war zone,

even if they weren't for that,

there didn't have a nervous system of someone who has experienced

a lot of trauma.

Maybe they have,

right. Maybe they haven't like,

but their nervous system is poised to respond much more strongly

to life events.

So, you know,

and it's all about threat detection.

They are very,

very hypervigilant.

We're on step,

your knee cap flies off its tracks.

You have to be hypervigilant.

It is it's exhausting.

So there's this hyper-vigilance and this constant threat detection.

So whatever life events happen in the course of your life,

you're more likely to have a post-traumatic stress response to that,

a stronger response to that.

Right. And,

and it really does.

I, if anyone is listening to this and your life is

starting to make a lot more sense from having this information

okay. And you want to find some help and some guidance,

obviously we'll give people your information,

how to reach out to you definitely read the book,

but where else can people find this sort of help?

And I think because it's so prevalent and it's so much

out there,

especially in our community,

what are,

what are we,

what are we doing about this?

Are you going to have a specialized training program or an

online course or something that you offer for educators?

Well, so I'm going to have an online course called well,

maybe called yoga for many people.

It's, I'm going to be filming it next month.

So it's got to happen soon,

but it'll go along with a book and it will be

for yoga teachers as well as practitioners.

And it will basically have a lot more practical applications,

demonstrations that I talk about in the book,

but also the same background information.

And there's a lot of exciting stuff going on out there

in the world.

If you start digging,

you will find so much research that's being published about hypermobility,

syndromes and organizations that are working on educating medical practitioners.

And one of the big organizations doing that is the Ehlers-Danlos

society and their website is just a wealth of information.

It's wonderful.

There are a couple of podcasts,

one in particular that is focused on hypermobility couple,

actually one's called the hypermobility happy hour and then another,

yeah. And then another called bendy bodies Podcast yet.

Not yet.

I hope to be.

Yeah. Yeah.

And, but I met both of them and in fact,

interviewed both of them for my book and the hyper mobile,

the bendy bodies is often geared towards dancers,

which that's another population where they're really dealing with this.

And the woman who hosts that podcast is Dr.

Linda Blustein.

And she calls herself the hypermobility MD.

And so she is another person.

Who's got a lot of information out and is doing a

lot to educate folks about this.

So I think we'll see more and more of it because

people are really coming to a bigger understanding of it.

And I'm really passionate about advocating for diagnosis so that it's

more visible in the medical community,

right? The more doctors who have patients with this diagnosis,

the more doctors are going to be motivated to learn about

this diagnosis.

And then that starts to change things.

So I really think too,

that diagnosis is freeing for a lot of people.

It certainly was for me,

I don't have to be afraid of this weird stuff I,

and now.

I get it.

My body's a little different and now I can just move

on with my life and learn how to manage it.

So I find that it,

it really is freeing in a lot of ways.

So anyway,

there are those resources out there.

Those are just a few that come to mind.

Well, we'll,

we'll get all those links and attach them to the podcast,

obviously. So people can easily track some of this down.

So yeah,

this is a,

it's a big topic and we've spoken about a lot of

stuff. We've,

we've been talking for almost an hour and we still have

some of the clinical practical stuff to go over.

So just to wrap up this first part of our discussion,

what would be your,

your message?

I mean,

I've, I've,

I've read what you've written in the book.

And so a lot of it is,

is, is there a,

of what you really want people to know about this,

but if someone could have said something to you in your

twenties that would have saved you an enormous amount of suffering,

other than saying,

Hey, here's this thing called Ehlers-Danlos,

you know,

maybe you should look into it.

What would,

what would that message be for,

for, for young Libby or young,

whoever is hearing this to,

to help them?Oh

gosh. I mean,

that's just,

it was a little bit overwhelming to think about if I

had known this in my twenties,

how much it would have changed my life,

basically, if I had known that my body's ability to do

weird stuff was related to all the other weird stuff in

my life,

all the other,

the food sensitivities,

the constant search for like food allergies and all this stuff,

you know,

and that's so common and the anxiety,

and then just the feeling like I can't stand up,

it's exhausting to be upright.

You know,

my mom used to call it wilting.

I would just be wilting.

And you'd see me leaning on furniture all the time.

They just,

they can't stand to be upright.

And it's because of all this physiological stuff going on,

it's so uncomfortable.

And it would have just been so helpful to know that

it makes sense why you are so uncomfortable all the time.

And there are a lot of other people like you and

there's stuff you can do about it,

and you're not crazy or weak or wimpy,

you know,

and you don't,

even If you haven't done anything wrong.

Exactly. And you don't just need to do better alignment.

You know what I mean?

Like it's,

it's, this is a much bigger thing and it gives you

extra sort of super powers too some,

you know,

a lot of times just empathy,

that sensitivity that people have,

you know,

there's some really positive parts to it,

but you also have to learn to manage those too.

Okay. So super powers.

What are your super powers other than party tricks?

Yeah, so party tricks that I don't do it anymore.

I do think feeling like feeling in my body that that

interoceptive volume comes into play when there's empathy,

I feel what other people are feeling too.

And that is hard to differentiate what that person feeling and

what's my,

what am I feeling?

But it also plays in my ability to,

to empathize and to have connection,

you know,

that understanding of people.

I think that helps certainly clinically.

And I think just the mental processing,

my mental,

you know,

a lot of people with hypermobility syndromes have an ability to

get really hyper-focused and process a great deal of material in

their mental bodies and digest it and spit it out.

And so they tend to have sort of a high intellectual

sort of stuff and really love that.

And I can sit down and,

and really focus for a long time.

It's kind of like it,

you know,

there's ADHD,

but there's also this hyper-focus,

which actually might be a bit of a form of ADHD

in some ways.

Or it's a little spectrumy.

I mean,

you, you mentioned they have spectrum disorder diagnoses in higher percentage

when they have hypermobility.

Exactly. And so there's a little bit of a spectrumy,

mind power sort of thing,

going on with a lot of people.

So I would say that's where I am in the sensitivity.

So I try to see those things as,

as positive attributes,

but I also recognize that those things are exhausting and the

biggest thing,

you know,

another thing,

if someone had told me 20 years ago,

you don't have to work so hard.

This just doesn't have to be so hard.

And you have a special system,

a special body,

a unique system that takes in a lot of information and

that process a lot of information and it needs a lot

of rest.

It just needs so much rest and integration time and you

got to manage your energy or you're just going to burn

it out.

And that's what happens.

People just go,

go, go.

And they,

they literally hit such a wall they're laid out for days

in bed.

And so pacing and just bringing down the expectations of what's

possible in a day,

you know,

is so critical that concept of pacing.

Well, we'd like a,

high-performance a F1 car that just needs a lot of pit

stops. Yeah.

Lots of pit stops.

It's a great way to think of it.

Lots of refueling,

you know?

Yeah, yeah.

And the tires wear out real fast.

Yeah. Yeah.

So, so again,

there's that needle to thread,

which is,

we don't need to handle ourselves or others with hypermobility with

like fragility gloves.

But we do want to encourage wise management of energy wise

use of yoga practice so that you are left with the

best of yourself to bring to what actually matters in your

life. And again,

I think that's one of the cruxes of yoga in the

modern age is,

is just that exactly.

That is not to burn it out on the yoga mat,

but actually to leave yourself more integrated so that you can

meet your life even better,

you know?

And yeah,

Well, it's like that shift,

you described it,

the KYM,

you know,

doing less,

simpler tools,

working with the breath,

integrating, pulling things together.

Yep. Just do less.

That's a huge,

it's like one of the big banners do less.

I know I'm always talking to people.

It's a really hard work sometimes to not work so hard.

Yeah. It's the hardest work and,

and really hypermobile people tend to be kind of overachieving perfectionists.

It just tends to be a bit of a personality trait

there. That's pretty well-documented out there.

We probably just anecdotally,

but, but nonetheless,

it's very hard to do less and to pull back whether

it's range of motion or,

you know,

activity expectations.

And when it comes to yoga practice,

it's all about changing our whole idea of what is yoga

for and what is it for?

And if it's Personality type is,

is exactly what Dr.

Sarno describes in his criteria for,

you know,

TMS, you know,

the, the common sources of chronic back pain.

And he,

he has a whole theory about,

you know,

ischemia and,

and all of that.

And it seems like there's a big overlap in what we're

doing. That's really interesting actually,

because I ischemia there's something really to that with muscle tissue

and ischemia.

I mean,

that's what I was describing in that coat hanger scenario,

when muscles are like that,

they are ischemic and they hurt they're acidic,

and there's a painful soup that builds up.

And that's what some,

you can just plan on happening in the hypermobile body.

That's this,

that's what's going on all the time and it will be

going on all the time.

That's the other thing I would say to a young version

of myself,

is it,

this is your life.

This is not just getting over this little,

you know,

injury right now.

This is how are you going to live your entire life

and manage this,

this long-term,

this is,

we were going for a sustainability.

We want tools that we can use all the time from

now on forever.

Yeah. And 20 year olds are just developing their brains to

the point where they can do that kind of executive function

planning for the future sort of thinking.

It's true.

And if you told me that really at age 20,

I might've thought whatever,

That's what I'm saying.

It's like,

if you tell that to a 20 year old,

they're like what the rest of my life what does that

mean? Yeah.

And then I would have opted,

honestly, just to plant my face between my knees at Ashtanga

class anyway,

honestly, you know,

it's really that I that's just where I was.

I was really caught up in the performance of that.

Yeah. Yeah.

Well, maybe there's some 20 year olds out there.

They're going to hear this and,

you know,

save themselves some of the difficulties that,

that you discovered in your,

it was a your in your thirties when you figured this

out. Right.

So when I finally got diagnosed,

I was in my forties,

early forties,

but, you know,

when I discovered KYM and the different way of practicing when

of my body started to feel better dramatically also starting to

strength training was in my thirties.

Yeah. All right.

Well, and you want to be able to still be moving

around in this planet when you're in your fifties and sixties

and seventies.

So, And there's no reason that we can't Exactly.

So speaking of that,

we're going to just make the segue here.

And I'm just going to remind our listeners that a,

the premium content is about to come and you'll see easy

ways to sign up for that on the rBreathing Project platform,

when we get all this uploaded.

So we're just going to sign off now for the first

part. And then here's where the premium stuff starts.

So Clinical Corner!,

You got a hyper mobile person on the mat.

What the hell do you do with them?

Well, you know,

I was thinking about this kind of,

what's a typical session.

Like a lot of my first session with people is us

talking. It's so much patient or client education.

It's a huge piece of it.

And so what I would say is,

you know,

don't skimp on that and it'll happen over time too progressively.

But usually in the first session,

people are just like,

Ooh, I had no idea,

you know,

and they're doing all the light bulbs and they're like,