Hello everyone and welcome back. I am here with an amazing guest because she specializes in something that is like I’m intensely ridiculously passionately interested in. And it’s anything to do with hypermobility. So if you have hypermobility, all right, stay with me. Listen to the entire thing. This is Dr. Libby Hinsley First of all, Libby, welcome.

Libby Hinsley (00:29)
and thank you so much for having me.

Ginger Garner PT, DPT (00:31)
I am so glad you’re here. All right, you guys, for the bio, I need to do a little bragging. So Dr. Libby Hinsley is a, of course, a doctor of physical therapy. She is also a yoga therapist, a personal trainer. She is specializes, I said is and specializes, anyway, she specializes in the treatment of hypermobility syndromes, which naturally you would think goes along with persistent pain.

Libby Hinsley (00:52)
Ha ha ha ha

Ginger Garner PT, DPT (01:01)
She has a book, Yoga for Bendy People. Obviously yoga about hypermobility and tackling that. It came out in 2022 and explores how people with joint hypermobility syndromes can use yoga as a tool to support their thriving. She’s developed a successful strength training program for people with hypermobility syndromes and as a person living with Ehlers-Danlos syndrome, hypermobile EDS.

and related health conditions. She is passionate and committed to raising awareness about hypermobility, syndromes in the yoga and PT communities and beyond. And she also teaches in yoga teacher training programs called Anatomy Bites. think that is so, where did that name come from? That’s great. And before we are all done, I’ll tell you about where you can find Libby, but tell me about Anatomy Bites.

Libby Hinsley (01:49)
you

Yeah, well, Anatomy Bites was kind of born out of COVID actually, when I had to shut down my in-person stuff and I had had this idea percolating for a long time. I’d been teaching anatomy to yoga teachers and I wanted to make a program that made anatomy fun, like specifically for people who think anatomy bites, you know, like anatomy sucks. But also it’s a play on words because it’s basically delivered in little bite-sized chunks.

Ginger Garner PT, DPT (01:59)
Mm.

Yeah.

Libby Hinsley (02:20)
frequently so that people can learn and process it and not be overwhelmed like so many often are when they’re trying to learn anatomy.

Ginger Garner PT, DPT (02:28)
Yeah, that’s so neat. I have such a passion for this topic. I don’t think I’ve ever really mentioned it to anybody because it was subtext in my own head, but hypermobility and yoga was the reason that I wrote my first book on yoga, Medical Therapeutic Yoga, because of the of the use and abuse of yoga just for mobility and flexibility and my favorite awful

Libby Hinsley (02:30)
Yeah.

Ginger Garner PT, DPT (02:57)
word that I hate to hear, flexibility. That it’s all about flexibility and about nothing else. So I love that you are tackling this topic. You’ve done a lot of work in educating clinicians about hypermobility syndromes. How did you first really recognize the link between hypermobility and just pelvic health challenges?

Libby Hinsley (03:01)
Yeah.

Yeah.

Well, you I didn’t know I had EDS until about four years ago, five years ago now. And, I was plagued by all of the standard signs and symptoms for my whole entire life. ⁓ I’ve had pelvic organ prolapse since before I had kids, you know, and I was just always like the outlier, ⁓ but also functioning pretty well. So, you know, there’s there’s lots of medical gas lighting. That’s the general experience of the Bendy person, I would say. And.

Ginger Garner PT, DPT (03:25)
Mm.

yeah.

Libby Hinsley (03:50)
you end up just gaslighting yourself because you’re so used to being gaslit. So anyway, I’m still trying to come out of that. But basically I did do pelvic PT for a while, some years back around my zone of having kids, I got really into that. But treating pelvic health patients and also just treating yoga practitioners and yoga teachers with all their aches and pains over the years, I just noticed I was seeing a ton of

bendy people, a ton of people with hypermobility, they turned out to be just like me. And I was like, gosh, I have kind of the same issues. I always have had the same issues. So it was through my own experience, but also kind of reflected in my clinical practice that I just became more and more interested in hypermobility as the thing that was tying together all these different challenges across so many systems of the body, right? Cause these are the people who had maybe some incontinence, some prolapse, some pelvic pain.

They also had wide ranging joint pain, myofascial pain, headaches, TMJ, fatigue, more propensity for autoimmunity, POTS, dizziness, all the things. And they were the people who were so chronically healthy, doing all the right things to keep themselves healthy, eating a super clean diet, and being really mindful about taking care of themselves. And yet,

Ginger Garner PT, DPT (04:54)
Yeah.

Mm-hmm.

Libby Hinsley (05:16)
despite all that, they were having all this chronic pain. And that was the same, same as me.

Ginger Garner PT, DPT (05:22)
Yeah. So you rattled off a list because you’re you and you do this stuff all the time. So for the listener, can you go back through that list of things that women may expect to feel or could feel? Because there is a spectrum. Like so many things are spectrum, right? And I think this is one of those things, but…

Libby Hinsley (05:45)
Mm-hmm. Yeah.

Ginger Garner PT, DPT (05:50)
like start at the top and kind of go to the bottom of all the things that they could feel that they could potentially get gas lit about that could in fact be hypermobility.

Libby Hinsley (05:59)
Yeah, so you’re right, it’s a spectrum situation, but I like to think of it as a spectrum of variety as much as it is a spectrum of severity. And so many people are like, yeah, I’ve got like a few things, but it’s not as bad as.

Ginger Garner PT, DPT (06:08)
Mm.

Libby Hinsley (06:14)
fill in the blank. And that’s what I would have always said. It’s not as bad as somebody who’s like dislocating their joints all the time, but that’s not always what it looks like. I’ve never dislocated a joint and I have EDS So, so yes, I’ll kind of cover all the different places where hypermobility syndromes can show up in the body in this like musculoskeletal realm.

it’s common to have wide ranging joint pain, almost like inflammation kind of feeling, sort of systemic, or a propensity to have tendonitis a lot, and it’s moving around. I like to call it the game of whack-a-mole, and the thing flop, and you whack it down, and then the next month it’s over here, it’s the elbow, but ⁓ now it’s the knee, and you sort of spend time chasing all these usually minor aches and pains.

Maybe there’s joint instability, maybe you do dislocate, or maybe there’s just a sense of extra wobble. There’s like a partial subluxation, a partial dislocation. So all those joint problems could be assigned. I will say the top two or three joints that are problematic are the SI joint, the TMJ, and the shoulder. Those would be.

Okay, and then this is a person who’s very prone to develop myofascial pain. So their muscles hurt, muscular tenderness. There’s a high overlap between a fibromyalgia diagnosis and hypermobility. This certainly could coexist. Maybe they’re misdiagnosed, who knows? But that experience of being very tender to the tissues is really common.

Ginger Garner PT, DPT (07:48)
Yeah.

Libby Hinsley (07:55)
Also, fatigue is super common. And it’s the kind of fatigue that’s just not normal fatigue. It’s like not, you know, not alleviated by sleep. Sometimes along with the fatigue is exercise intolerance. Someone classically goes to their exercise class, works out at the gym, they feel fine while they’re doing it, or maybe it’s a yoga class or Pilates class, whatever it is. The next day, they’re laid out with fatigue, they’re exhausted for a day or two or three.

Ginger Garner PT, DPT (08:01)
you

Libby Hinsley (08:25)
have stronger muscle soreness response. we know Bendy people tend to have a stronger delayed onset muscle soreness. So it might look like that. They often have pelvic health concerns, whether it’s pelvic organ prolapse. I’d say that might be the top of the list because that’s even one of the diagnostic criteria for HEDS, hypermobile EDS.

incontinence, pelvic pain, all manner of pelvic pain syndromes. Let’s see other common things, dysautonomia, which is a fancy way to say that the autonomic nervous system has a hard time regulating heart rate and blood pressure. That can look a lot of ways. The most common way is POTS, postural orthostatic tachycardia. So people get dizzy, lightheaded, brain foggy, they might have stomach pain. You know, in addition to that, they often have GI issues.

Ginger Garner PT, DPT (09:20)
Mm-hmm.

Libby Hinsley (09:20)
like

IBS type things, maybe delayed gastric emptying. might, you know, it could look a lot of different ways. I mean, I could, the list is really long actually. So I’ll add a couple other things that are super common. One of them being neurodivergent diagnoses. So like we know people with ADHD and autism spectrum disorder are four to seven times more likely to be hypermobile and vice versa.

Ginger Garner PT, DPT (09:25)
Yeah.

Libby Hinsley (09:49)
So there’s a lot of overlapping kind of Venn diagrams, you know, we could draw.

Ginger Garner PT, DPT (09:53)
Mm-hmm. Yeah.

That was a really great overview. so, okay, if you’re listening and, um, Livy just outlined, like, 15 things that you feel, know that you’re in the right place. Keep listening. Okay? We’re gonna keep talking about this. There is help. This is not something that you’re just gonna get eternally gaslit for and about. Uh, there are definitely concrete things that can be done. And, um…

and that’s what we’re gonna be talking about. Our focus today on hypermobility is really circling around the endometriosis camp. It is probably one of the top misunderstood and misdiagnosed conditions out there. And so what I just wanna open the conversation up with is how does hypermobility complicate or intersect with endosymptoms?

Libby Hinsley (10:49)
Mm-hmm, it’s a really good question. I, there’s not really a ton that’s understood about it yet, but it appears to be a thing, right? And.

where to begin. Well, I would say, you know, someone with a hypermobility syndrome and someone with endometriosis might be the same person. And a lot of times they’re not the same person, but there’s certainly going to be some overlap. And it, you know, even though the research isn’t really suggesting a strong, like a stronger than normal overlap yet.

Ginger Garner PT, DPT (11:03)
Wherever you get the most fired up, that’s where you should begin.

Libby Hinsley (11:29)
Anecdotally, I just keep hearing in the last few years more and more and more about this. People are starting to wonder, huh, is there actually a link between hypermobility syndrome, the connective tissue disorder and endometriosis? And if there is like a pathophysiological link, like a causal link that connects these, it’s probably in the mast cell department is what I’m gathering from.

research that’s sort of implicating a role of mast cells in endometriosis. And we know that Bendy people very commonly have problems with their mast cells, mast cell activation syndrome, where they have histamine, a of histamine and other inflammatory things going on, itchy, rashy inflammation. But what I get most fired up about is the medical gas lighting that both of these people would have experienced for probably many, many years.

Ginger Garner PT, DPT (12:22)
Yeah. They’d get a double whammy.

Libby Hinsley (12:25)
A double whammy, absolutely.

And let’s say they have both. I’d say that the endo is gonna just be like a magnifying glass to all of their other challenges. And it will just amplify them. It’s gonna amplify their sensitivity to pain. It’s gonna further sensitize that nervous system that in the bendy person we already know is poised for hypervigilance. The bendy brain is different.

It’s got a bigger amygdala, it’s got a more reactive amygdala. Did it come in that way or is that an adaptive response to bendiness? Who knows? That’s an interesting question. But either way, it poisons us for chronic pain and for that sensitivity that is associated with chronic pain. So the endo is kind of doing the same thing and it’s gonna just amplify.

Ginger Garner PT, DPT (13:17)
Yeah, they’re creating a perfect storm, kind of. Yeah.

Libby Hinsley (13:17)
All that lead to fatigue and already with the mast cell. It’s a perfect storm.

And so it’s like a tangled ball of yarn. I mean, I see hypermobility syndromes as a tangled ball of yarn and endometriosis also seems to be that. Both of them are not well understood. In both cases, it’s very hard to find a medical provider who knows much of anything about it.

And yet they’re not rare conditions. We know endometriosis. It’s not rare. ⁓ my gosh.

Ginger Garner PT, DPT (13:48)
Right. Yeah,

you just hit the nail on the head. If you’re listening, you haven’t heard much about endometriosis, but you have some of these signs and symptoms. Think about it this way in terms of statistics. One out of every 10 men have diabetes. Everyone knows what diabetes is, right? And there’s about 15 times more funding for diabetes

than endometriosis per person in the United States every year, 15 times more. And yet the same number and probably more women suffer from just endometriosis. You could probably share some stats on the hypermobility side of things. That’s a lot of women and you’re exactly right, Libby. This is common. It is not uncommon. And yet we don’t have enough funding to even create enough literacy inside our own healthcare system.

to stop gaslighting people, mostly women.

Libby Hinsley (14:49)
Yep. Right.

I mean, it’s shocking how common it is. And I think if we knew the prevalence, had a better idea of prevalence of hypermobility spectrum disorder and hypermobile Ehlers-Danlos syndrome, which will usually just lump together as the most common forms of hypermobility syndrome, and they present identically in the clinical sense.

They’re diagnosed a little differently right now. But anyway, if we were to know the prevalence of that, many suggest it’s probably similar to endometriosis prevalence. Now, the best research we have is based on diagnosed prevalence of hypermobility spectrum disorder and HEDS in a population in Wales, not swimming Wales, but the country Wales.

Swimming whales might also be bendy. don’t know, but this is about the country whales. And that research shows that one in 500 people had one of these conditions. Okay. That’s diagnosed. We know the diagnosis rate of these things is unbelievably low. Many place at around 5%, meaning 95 % of people who have them are not diagnosed.

Ginger Garner PT, DPT (16:05)
I believe that.

Libby Hinsley (16:05)
So

the prevalence of these conditions is likely mind blowing, I think. It’s probably in the single digits, would be my guess, but of course, this is all I think about. So I’m gonna aim high. And I see it all the time too, because it’s kind of my world, but regardless, it’s much higher than it’s been appreciated in the past.

Ginger Garner PT, DPT (16:16)
Yeah.

Yeah,

so given the rates of underdiagnosis for endometriosis and underdiagnosis for hypermobility and the syndromes associated with hypermobility, how do you see, what are the most common patterns you see in patients who have both hypermobility syndromes and pelvic pain conditions like endometriosis would cause?

Libby Hinsley (16:51)
like clinical presentations. Yeah.

Ginger Garner PT, DPT (16:54)
Yeah, exactly. They

would come in and sit down and what would they say?

Libby Hinsley (16:59)
Well, they just have chronic things and they might downplay them. So I find that these populations are under reporters. Okay. So you might have experience with over reporters and usually those aren’t women in general. These are under reporting. All right. So when…

Ginger Garner PT, DPT (17:07)
Mm.

Libby Hinsley (17:21)
hard to describe this and it’s hard to get a sense of that maybe as you develop some rapport but there are people who have normalized their own symptoms for so long.

that they act like they’re no big deal, even though they are life-limiting, their quality of life-limiting, and that’s very obvious. So things like, how are they managing their fatigue, their activity tolerance being low, their pain being pretty widespread, Certainly if there’s coming out pelvic complaints, then we’re gonna see the incontinence and the prolapse symptoms.

pelvic pain, pain with penetration, pain with exam, painful periods, heavy bleeding, problems, all of those things, propensity for excessive bleeding during childbirth, things like that. In neck and shoulder tension, the common.

it’s like they’re going to appear like complicated patients. This is basically what’s going to happen. And they often also at the same time are quite high functioning.

So there’s a little bit for a lot of like practitioners, it doesn’t make sense, right? They’re seeing a person who’s very high functioning, achieving a lot, managing pretty well, and who’s got all this long list of complaints that sort of doesn’t match their high functioning status. And I think that’s what leads to so much gaslighting, right? I mean, I’ve experienced it with my EDS stuff. I went to so many specialists. They all did the same thing to me that they do to everybody else. There’s almost no chance there’s anything

Ginger Garner PT, DPT (18:49)
Yeah.

true.

Libby Hinsley (19:00)
wrong with you, you’re way too healthy to have all these problems. It’s like they literally just don’t believe you. You know, they just don’t.

Ginger Garner PT, DPT (19:04)
don’t believe you, they don’t believe you.

Libby Hinsley (19:07)
So then

Ginger Garner PT, DPT (19:07)
Yeah.

Libby Hinsley (19:08)
you’re like, I guess I’m okay. I guess this is what it’s like to be a human being in a body. I’ll just carry on with my struggle and assume this is kind of normal. Right. But then when something becomes once again, ⁓ unmanageable or they renew their inspiration to finally try something different and resolve it again, it’s really in spurts, right? They go in spurts of seeking medical care. And maybe they’re a few years apart of the last spurt didn’t get me anywhere. And I managed for a

Ginger Garner PT, DPT (19:32)
Yeah.

Libby Hinsley (19:37)
more years and now I’m in another spurt and I’m coming to see you. That’s kind of going to be the story, right? But you got to know that these people are under reporting. They have been dealing with chronic pain and chronic things that are taking up so much of their time and energy to manage for years and years and years and it’s not normal actually to live that way.

Ginger Garner PT, DPT (19:59)
Well, is, when we talk about the trauma of medical gaslighting, that’s a whole sphere and universe in itself where that requires seeking out help for that. That’s the mental damage, right? That gets done when you have been gaslit and not believed, and then you start to gaslight yourself. Of course, then that’s a whole therapy thing that you have to go through. And then,

Libby Hinsley (20:15)
Yeah.

Mm-hmm.

Ginger Garner PT, DPT (20:28)
you’re still hurting. No one has addressed it. Now you have these mental health issues that are valid because of the gaslighting, but you still haven’t had any of your physical symptoms taken care of. And I would think that this underreporting of the trauma and self-managing and keeping things kind of a secret would spread over into other areas of their lives too, right? Does that put them at higher risk? And this is not a question that we can answer today. It’s just a question for the ether.

Libby Hinsley (20:39)
Right.

Ginger Garner PT, DPT (20:57)
The question for the ether is, that put these people who have, it’s almost like if someone had experienced adverse childhood trauma, so adverse childhood experiences or what we all know in healthcare is ACEs. People who experience ACEs go on to tolerate other levels of abusive behavior from other people and they normalize it, right? They normalize the abnormal because that’s all they knew growing up.

it makes you question like, how much are they putting up with across their whole life? Are they in toxic work relationships? Are they in toxic personal relationships? Are they putting up with pain? Where the average person who didn’t have all the pain they went through, are they putting up with things that at some point we break the cycle and go, hey, you can push back on that, right? You can say, you can call and we can swear here. So we can say, absolutely, all right, that’s bullshit.

Libby Hinsley (21:51)
Yeah.

Ginger Garner PT, DPT (21:57)
Because at some point, if we can intervene and teach them how to not put up with that anymore, it’s liberating on multiple levels.

Libby Hinsley (22:08)
It is and it’s, I see it all the time. Again, it’s not a question we can answer, know, or like have data on most likely, but my guess would be definitely this is a population who at least due to their experience of gaslighting, that is a trauma experience. They have been taught by their experience to distrust their own

bodies and what they’re communicating to them, their own sense of how to make decisions. They have very often like gone to 20 different doctors trying to find the person to hand over their power to, you know, who’s the right person to fix this. And, but no one has.

Ginger Garner PT, DPT (22:52)
Gosh, yes.

Libby Hinsley (22:59)
been able to take it on in a way that’s empowering and actually gives a power back to the patient to learn about their own condition. So I think it’s detrimental in every part of life. And I do see it all the time with my clients and patients and in my own life. And I’m now as a mom, I’m just this week had to catch myself trying to medically gaslight my own kid, you know, like, I’m like, it’s probably not it’s not a big deal.

Ginger Garner PT, DPT (23:06)
Mm-hmm.

Libby Hinsley (23:28)
And I was like, oh my God, of course we should explore this. You know what I mean? But I’m so used to downplaying things that I have to catch it.

Ginger Garner PT, DPT (23:29)
Yeah.

That is, I think that’s worth pausing for. So message to everyone listening would be to trust yourself. Believe your own experiences. Because if you have any of these symptoms at all, you may have never even considered hypermobility or endometriosis as part of your journey or a possibility. But if you have some of these symptoms, believe them.

Libby Hinsley (23:51)
Yep.

Ginger Garner PT, DPT (24:08)
Don’t dismiss them. Trust yourself, believe in yourself, and if you have to doctor shop, don’t, you know, should yourself to death. Should I do this? Should I do that? Should I even bother them? Just keep doing it. It is not a negative or a bad thing to have to doctor shop until someone listens, particularly with these conditions, because they overwhelmingly impact

Libby Hinsley (24:11)
Mm-hmm.

Mm-hmm.

Yep, I would.

Ginger Garner PT, DPT (24:38)
impact women and we are like neck deep in papers that show how badly women are medically gaslit, especially when it comes to their anatomy.

Libby Hinsley (24:48)
Yeah, absolutely.

So yes, and keep looking and don’t stop looking until you find someone who validates your experience. And I would say that is worth pausing on. It’s the thing that is like the missing step in between suffering and like recovering or learning how to deal with these things is.

Ginger Garner PT, DPT (25:11)
Yeah.

Libby Hinsley (25:14)
learning to trust your own experience and having people on your healthcare team and you’re in your life who empower you to take back your power and to say your vessel, like your body isn’t broken, it’s giving you the information. It has been giving you the information this whole time. It is brilliant at giving you information. So you can actually trust it.

We have to learn what’s it feel like when something doesn’t feel right? What’s it feel like in the exam room at the doctor? What’s it feel like in my relationship? What’s it feel like at work? What are the signals that my body is already giving me? I have to learn how to recognize them and do not ignore them anymore.

Ginger Garner PT, DPT (26:02)
Yes, let’s fist pump for those of you not watching on YouTube.

Yeah, mean, amen to that.

So to circle back to a couple of things that I want to glean a couple of points here, and that is little girls probably won’t leave their adolescence without having some kind of sign or symptom of either hypermobility or endometriosis or both. Unfortunately, that may be your first ace, your first adverse childhood experience, which is horrible because

Because of the under-recognized, under-researched, under-attended to nature of these issues, it could mean that you experienced institutional betrayal in a place where you should have been accepted, like open arms, safety, sanctuary, everything that healthcare should be. You go to people as subject matter experts to take care of you, save your life, and improve your quality of life, and you got the opposite. It’s totally unfair.

Libby Hinsley (27:10)
Mm-hmm.

Mm-hmm.

Ginger Garner PT, DPT (27:12)
So that

hypervigilance of the nervous system may not lead you to be quote, quote, hypersensitive, which is what, that’s part of the gaslighting, right? you’re just hypersensitive. you just noticed too much. you just fill in the blank. Much like someone could gaslight you if like they were a narcissist trying to just play down at your entire experience of your whole life. And with that destabilization of the nervous system,

You know, as a therapist, and across the therapist’s collective, right, mental health, occupational therapy, pelvic health, pelvic PT, pelvic OT, et cetera, there’s a lot of therapy, right, that kind of, we need a team, takes a village. When you’re working with that experience, chronic pain, fatigue, nervous system dysregulation, how are some of the ways that you approach stabilizing the nervous system

Libby Hinsley (27:56)
Yep.

Ginger Garner PT, DPT (28:11)
in patients who might have both endo and hypermobility. And obviously they’ve been medically gaslit. If you have these issues, you’re not, no one is going to probably listen to you the first time you go in and sit down and talk about your symptoms. So how do you help them kind of come back to that kind of heart center calming place where they can self-regulate?

Libby Hinsley (28:33)
Well, that’s gonna be the journey. And you’re just, so right. Oh my gosh, I see so many teenage girls who have been diagnosed with just anxiety or, you know, and or disordered eating. And what’s happening is that they are starting to express symptoms of EDS and POTS.

Ginger Garner PT, DPT (28:45)
gosh, yes.

yes.

Libby Hinsley (28:54)
and they’re dizzy and they’re are introceptively sensitive. We know that about people with hypermobility. So they do feel more inside their body than typicals do. It’s not pathological. It’s a unique physiology that they have. They haven’t been educated. They’ve just been said, you’re too sensitive. You’re feeling too much. Well, they actually are extra sensitive. That’s their superpower, but it just gets twisted around and, you know,

Ginger Garner PT, DPT (29:12)
Right.

Libby Hinsley (29:21)
described in a negative way. need.

Ginger Garner PT, DPT (29:23)
Right, ooh. Let me, I wanna just, let’s

hit that ball out of the park because that’s a really important point is that you do have that special interoception. Interoception is knowing how you feel. And so in mental health therapy and physical therapy, for example, we are going to ask you constantly, like, how do you feel? How does your body feel with that? And so Libby, you just said it like, that’s so perfect. Okay, two fist pumps now, okay? Two fist pumps, not just one.

Libby Hinsley (29:28)
Yeah.

Yeah.

Ginger Garner PT, DPT (29:53)
that special interoception that you have is your superpower. Don’t let anyone pathologize that and tell you it’s wrong. That’s what keeps you safe. It is your body’s superpower that is protecting and self-preserving.

Libby Hinsley (29:59)
Yeah.

Exactly.

Exactly. Yes. So changing the narrative for them is the primary thing and that rapport, that therapeutic rapport that you, you know, hopefully develop with your clients and patients that helps them to feel safe, that you believe them and that we’re going to learn from the body. So this has to be the kind of paradigm, you know, that you present to your, person you’re working with is like, we’re a team, I’m on your team. Your body is the expert.

And it’s, we got to learn its language. have to get to know it over time. This is going to be a process, but we’re going to try some things and then study your body’s response really closely and document it and then adjust accordingly and then try this. So they have to know from the outset that we’re in a process. I don’t have all the answers.

Ginger Garner PT, DPT (30:55)
Yes.

Libby Hinsley (31:02)
they actually have all the answers and I’m gonna help them decipher the information, you know, because the body is particularly sensitive, the nervous system, particularly sensitive in this crowd of people. And again, that is an asset, but because of that sensitivity, the signals can be so overwhelming and difficult to interpret.

and understand what do we do about it, that’s the task is to try to learn about that through practicing.

you know, sensory awareness, really basic things, less is more is one of my mottos, especially when we’re doing like exercise, I find resistance to be such a great tool to improve sensory awareness, right, rather than like just like pumping iron just for the sake of it. It’s like a, it’s like a sensory medicine almost, you know, every single little repetition that resistance helps people feel like, I did feel that muscle. Wow, that felt really,

Ginger Garner PT, DPT (31:51)
Mm-hmm.

Mm-hmm.

Libby Hinsley (32:06)
really good because we know that the bendy person and the person with chronic pain, right? Just across the board, they have blurry body maps in their brains, maps of the body, their brains like it’s a murky picture. It’s not a clear picture of the body. And that makes it difficult to really differentiate what’s going on in the body and understand these sensations. through practice,

through paying attention to how we feel, those little maps up in the brain get clarified and have an easier time connecting with our body parts.

Ginger Garner PT, DPT (32:42)
Yeah, that’s like a camera from out of focus. Before we had iPhones, right? And you’d take an out of focus picture from your third grade field trip versus one that’s, you know, has high clarity and like high fidelity sound to it. So one of the things I was gonna give the audience is kind of an example and you can like refine it or give me another example or that kind of thing. But…

Libby Hinsley (32:59)
Exactly, yeah.

Ginger Garner PT, DPT (33:11)
I was just working with someone who you pretty much described perfectly this morning, actually, in patient care. Because this is how it rolls around here, y’all. It’s podcast in the afternoon and it’s patient care in the morning. So she was in that ACE experience, right, an adverse childhood experience. Younger, hypermobile.

endo like all the things. And I thought it was absolutely brilliant that she hit on the interoception and proprioception that we’re talking about right now. So for those of you listening, you’re like, what the heck? Okay, interoception, which we touched on earlier, is the ability to understand how we’re feeling internally. Proprioception is what Libby just talked about, is where am I in space? And that body map, right?

And she so brilliantly described that this morning, because that is, I feel like that’s one of my chief jobs, and I’m sure you probably feel the same. I think it’s really, really interesting that the trauma literature, especially from yoga work and the work of Bessel van der Kolk and others who wrote The Body Keeps the Score, talked about how introducing movement instead of just talk therapy,

helped people lose their complex PTSD diagnoses. And the key to that was focusing on interoception and proprioception as a means for regulating the nervous system. So teaching them where they are in space, teaching them to understand how they feel, that actually helped their mental health, not just their chronic pain, which was brilliant. And so this young girl this morning looks at me and said, basically,

that’s my goal. I want to be able to differentiate how I’m feeling and understand it. Which sounds so minor, but when you know the science behind it, it just is kind of mind blowing that already at such a young age, she’s experienced so much institutional betrayal that she can already recognize she wants to be able to trust herself and her body and where she is in space and regulate that. And so I think an example would be

Libby Hinsley (35:15)
Yeah.

Ginger Garner PT, DPT (35:38)
and I’ll just pull one out of the air from like one of the many points we were hitting on, was like being able to differentiate between what might be ovary pain, right? Like a period type pain versus a psoas or hip flexor type pain, right? If you could understand the difference between those two types of pain, and there are ways to differentiate it, which I think is part of our job as therapists is to help them understand that.

Gosh, that tamps down fear, right? And it changes the treatment, because we may do something different for ovarian pain versus what we may do for psoas, know, type hip flexor, snarky psoas is what I call it. But I’m sure you have other examples where you can kind of expand on that from patient care of how important it is to be able to distinguish it. It puts you in the driver’s seat. Like you get your power back as soon as you can differentiate those things.

Libby Hinsley (36:09)
Yes.

Mm-hmm.

No.

Yeah.

It’s so true. just to ask people for to lean in to kind of zoom into their sensory experience, they might say this hurts or I have pain here, but to lean into it and say, I want to know more about that specifically. How specific can you get in your description of that sensation?

Because now they’re like, ⁓ now I’m kind of curious about the sensation rather than just being scared and wanting to avoid it because it is pain or whatever the big umbrella category they might be putting it in. So the minute they are like, how would I describe it? Gosh, is it sharp? Is it dull? Does it travel? Now we’re in the mode of curiosity. And that’s, think, their best friend. If they can get into curiosity mode as they study their experience, boom, we are on our way.

Ginger Garner PT, DPT (37:01)
Yeah. Yeah.

Yeah.

Libby Hinsley (37:24)
because

it’s hard to be afraid of something you’re curious about. fear of our own bodies is like, that’s the worst. It’s the biggest barrier, know, fear of movement, fear of discomfort. And we’re so afraid of things that we can’t understand yet. So, you know, it’s valid that people are scared. It makes sense that people are fearful of that, but to start unraveling that with curiosity, find really, really helpful. You know, another thing would be studying

Ginger Garner PT, DPT (37:40)
Mm-hmm.

Libby Hinsley (37:54)
joint pain versus muscle soreness after exercise. mean, learning the difference there, like is there a sharp shoulder pain or do I feel like, you know, I did some rowing exercises and I now I’m aware of my, you know, inter scapular muscles, they’re a little bit fatigued and sore and that’s normal, you know. Those types of differentiations are really, really helpful.

Ginger Garner PT, DPT (37:58)
Yeah, that’s a big one.

Mm-hmm.

Yeah.

Libby Hinsley (38:23)
I

just came out of teaching Bendy and Badass, which is the strength training class. had two classes today, both of them full of Bendy people, like 10 people each class is so great. And they’re learning how to do some strength training moves, but we’re really using the resistance, the load as a sensory training tool. How can this…

exercise any modality of exercise or movement or manual therapy, really any kind of treatment approach. How can it train my nervous system to understand my body better? That’s really the task. Yes, we’re kind of going for strengthening too, but what’s so much more important in the chronic pain realm and the bendedness realm in the all the what we’re talking about is that better ability to sense embodiment.

to arrive inside your body versus having an out-of-body experience, which is often what we’re having because we have gone to that sort of dissociative place because of our trauma response, fear, discomfort, all those things kind of drive us to avoid. Yeah, yeah.

Ginger Garner PT, DPT (39:32)
And cultural conditioning as well. People

all the time are like, look at how strong she is. She didn’t even cry. Look at how strong he is. Especially for men too. He didn’t even like flinch. like, since when is strength being absolutely stoic and pushing everything under a rug so that you don’t even know what you feel, right? So I think there’s a lot of cultural conditioning that goes into it as well.

Libby Hinsley (39:55)
Yeah.

Yeah.

And one thing I’ll hear all the time from the hypermobile person is they’ll describe, they will have gotten into a habit of describing their body parts as being out. So my shoulder is out. My sacrum is out. My hip is out. know, my rib is out. Everything’s out. And so, you know, sometimes I try to make light of things a little bit, keep things lighthearted and I’ll ask, where did it go? Where did it go out? We got to find it. We got to bring it back.

Ginger Garner PT, DPT (40:11)
Mm, yeah. Mm-hmm.

Ha ha ha ha.

Libby Hinsley (40:28)
But also, you know, understanding that is like something doesn’t feel quite right. And so I want more information. Yes. So I’m always asking for just more detail. I’m curious about that. Tell me more about where do you feel that? What’s it feel like? You know?

And then eventually I might talk about how stable the sacrum is and that it doesn’t travel far. It might travel a little bit extra, but maybe a few degrees, you know, but that there’s certainly pain there. There’s discomfort there and we might have a better way of describing it and understanding it that isn’t so scary actually.

Ginger Garner PT, DPT (40:55)
Mm-hmm.

Yeah, I think that may be one of the chief things that is incredibly important about physical therapy in these populations is that we can teach them not to be afraid of movement. Now we call that kinesiophobia. if you are all y’all that wanna nerd out, all right, we’re kind of unraveling that kinesiophobia so that you’re not fearful of movement anymore.

Libby Hinsley (41:05)
Mm-hmm.

Yep.

Ginger Garner PT, DPT (41:30)
because you then can discern, well, that felt like fascia or that felt like muscle. That was more mechanical. That might be a joint, right? Discerning that, and I often will give patients a decision tree in their homework. If this hurts, I want you to try this thing, this thing, and this thing, okay? If it’s A, then do, it’s like choose your adventure. Let’s choose our adventure books.

Libby Hinsley (41:53)
Totally. Yeah. Yeah,

Ginger Garner PT, DPT (41:56)
Or if it’s A, then

Libby Hinsley (41:56)
I loved this.

Ginger Garner PT, DPT (41:57)
I want you to choose number one. But if it’s B, you gotta go with number two. And so it puts them in the driver’s seat. If you know what, I do think that this is a mechanical issue. I need to schedule a therapy session or you know what, number two, that worked well. I’m gonna stick with that and self-manage at home.

Libby Hinsley (42:00)
Yeah.

Yeah, I agree. I use a lot of self massage, the self soft tissue treatment modalities. I happen to like therapy balls. There’s all kinds of tools. So one of things I like to do is encourage people.

say they’re doing a set of squats and their patella femoral pain flares up at rep number three. You don’t need to keep going to eight or 10. Stop at number three, get on the balls, deal with your quadriceps. It’s yanking on that patella. Then get back to it and finish your set. You don’t need to just keep going when this little tweak comes up. We’re gonna address it right now and then get back to it. And they’re like, my gosh, it does feel better.

Ginger Garner PT, DPT (42:52)
that

you just gave them permission to like, you know, kind of self-prescribe, which is good because we have this all or nothing society, right? Where if you’re working part-time, you’re not really an expert at that. Or if you can’t do the full 30 minute workout, then you might as well not do it at all. Like we know those things aren’t true, right? You can have subject matter expertise at any level and you can enjoy fitness even if you broke up.

Libby Hinsley (43:02)
Mm-hmm.

Yeah.

Ginger Garner PT, DPT (43:21)
30 minutes of exercise into two minute segments across an entire day, you’re still gonna be just as fit, maybe even more fit, because you probably worked harder in those two minute segments than you did the full 30. But that is such a hard mental thing to break for people, that they can take a break and then come back to it.

Libby Hinsley (43:24)
Yep.

No,

it’s almost impossible. It seems to learn that it’s, it’s, it’s so hard to overcome. I constantly, I feel like a broken record. I’m always saying there’s nothing magical about 10 reps. my gosh. Do three. Three is amazing because the, want quality, you know, and the three slow, you know,

Ginger Garner PT, DPT (43:43)
Hahaha

Yeah.

Mm-hmm.

Libby Hinsley (44:05)
reps using the correct target muscles are so much better than 10 mindless reps that where your knee is hurting or whatever it is. It just, it’s not even worth it really from that sensory retraining standpoint and stuff. So it’s such a hard habit to overcome.

Ginger Garner PT, DPT (44:10)
Yeah.

It is, and it doesn’t seem like we ever fully beat it, full transparency. I’ll give you an example. Before kids, I could do my hour, 90 minutes worth of yoga, all strength-based, working on holding it all together. And then I had kids. And then I could only do five minutes here, 10 minutes there, 30 minutes here, 10 minutes. And it was actually, it took me being forced.

to take those breaks, to learn that I could be in better shape than I was before with less injuries, right? I mean, I didn’t have a choice. And do you think that I learned my lesson? No, no, no, I didn’t, I didn’t. I will still do that to myself. If I have, like, after we’re done with this podcast, I’ll have a little bit of time before it gets dark, right?

Libby Hinsley (44:58)
Yeah. Yep.

Mm-hmm. Mm-mm.

Ginger Garner PT, DPT (45:17)
Am I gonna do the 10 minute dog walk or I’m gonna go, you know, I wish I could actually go run the three miles. I’m just not gonna take the 10 minute dog walk. What? just, didn’t learn anything, right? So I just want all y’all to just realize that, you know, although you might learn the lesson once, you’re gonna have to learn it like every, for every season and every phase of life that you’re in. We’ll still have these struggles, you know, but interval training can really, really…

Libby Hinsley (45:26)
Mm-hmm.

Yeah.

Yeah, it’s why.

Ginger Garner PT, DPT (45:46)
get great results.

Libby Hinsley (45:48)
It’s true. I mean, this is why I still have a coach and she tells me what to do five days a week and I do my assignments. And if I didn’t, I either wouldn’t do it or I do too much, you know, it just wouldn’t be, it would go sideways. I just know it would.

Ginger Garner PT, DPT (45:54)
Yes.

And that’s

smart. You know what strategies you need. And I think that’s kind of, that hits the point. That’s the home run. That’s what we’re talking about is if you know how you learn and how you move and how you feel and what conditions you work best under, that up for yourself, right? And don’t worry about how everyone else gets to exercise or move or how their sleep looks like or just don’t even care. And I think that’s…

Libby Hinsley (46:05)
Yeah.

Mm-hmm.

Yeah.

Ginger Garner PT, DPT (46:30)
That’s a blessing of, I think for me, reaching 50, right? There’s all these other changes that happen. And that’s the next question, like, gosh. So we’re talking about younger women and their struggle and then motherhood and that struggle with hypermobility and endo. What happens when women hit 50 and beyond? And I think for me, learning those boundaries and setting those limits,

just in time management and the whole you don’t have to do all or nothing, right, is a shift because your bullshit meter, know, your BS meter, your radar or whatever, you’re just like finely tuned and you know how your body works and what you wanna do with it. But anyway, that just is just full transparency for me, but that’s the next question. How do you see women present as they enter into perimenopause?

Libby Hinsley (47:02)
Right, right.

Ginger Garner PT, DPT (47:27)
Postpartum can look like perimenopause for some time, hormonally, right? So how do you see women present differently? And really from a mental health perspective too, because that’s a whole other special area of gaslighting, is a perimenopausal to menopausal to postmenopausal women being told, you can’t have endo. You’ve already been through menopause, right? We’ll just bust that myth and get that out of the way, like right off the top. But what do you see with hypermobility?

Libby Hinsley (47:56)
Well, I see that if things haven’t caught people’s eyes in puberty and in perinatal time, if they had children or birth children, then it shows up in menopause. That’s when it comes up. And so plenty of people, especially women, certainly in perimenopause, menopausal time, that is when they realize that they have a hypermobility syndrome and that looking back on their life now, everything gets revised.

And my goodness, this is why, you know, my whole life makes sense. It, just, wasn’t enough to catch my attention maybe, or maybe I did pursue a little bit here and there 20 years ago. I never got anywhere because I just got medically gas lit or whatever. And I managed and now things really start to fall apart.

Ginger Garner PT, DPT (48:33)
Mm-hmm.

Yeah.

Libby Hinsley (48:44)
And it’s a fatigue and it’s chronic tendonitis that travel all over the body and tendinopathies and bone density concerns, right? That’s not gonna be like a, I mean, they might have a fracture, but it’s more, my gosh, I have my DEXA scan and holy smokes, you know?

Ginger Garner PT, DPT (48:52)
Mmm.

Right. Well,

one of the things I would love to bring up to people, thank you for mentioning that, is the current recommendations for DEXA scans is 65 years old. Yeah, yeah, 65. So if you’re listening and you think that this is an issue for you and you’ve ever been on birth control or any other hormone suppression or anything like that, and even if you have not,

Libby Hinsley (49:10)
Wow, I didn’t even know that, I wondered.

Ginger Garner PT, DPT (49:25)
please advocate for yourself to get a DEXA as soon as you can, particularly when you start experiencing perimenopause, because that’s where you can lose the most bone density the fastest is in that first five years. So even that, like our healthcare system isn’t even protecting women’s bones because at 65, can you imagine what damage is already done by the time they’re 65 years old? Yeah.

Libby Hinsley (49:45)
No, it’s already done. And so I guess

I didn’t realize that that was the recommendation was so late. I was hoping it was more like 55. I’m 48 and I knew I was too early to have my doctor reasonably want to order one, but they’re actually the university in town. I recently learned you can go pay out of pocket for a DEXA scan at their wellness department at UNC Asheville. And I did that just like two weeks ago.

Ginger Garner PT, DPT (49:52)
I know.

Mm-hmm.

Awesome.

Libby Hinsley (50:10)
Yes. And I was hoping I’d have a really good solid baseline to follow over time. And I do, but it’s not quite as good as I expected. Cause it’s a way, it’s like, Oh my gosh. I have been, you know, in my mind, pretty hardcore strength training for years, especially several years, very consistently and heavy. And my muscle mass is low, not quite sarcopenia. Okay. But low.

Ginger Garner PT, DPT (50:19)
Yeah, I know.

Mm-hmm.

Libby Hinsley (50:37)
And my bone density is low for my age. Now I have to get the more specific site specific testing to really get a value of that and see. But I was discouraged about that actually and sad. And then I realized, my goodness, can you imagine if I’d had a DEXA scan three years ago? It’s probably so much better now actually.

Ginger Garner PT, DPT (50:58)
Right.

Libby Hinsley (51:01)
I bet I’ve improved and I bet I was at such a significant deficit coming out of my childbearing years and having, that’s when my health totally collapsed and I was very ill for a few years. And I was so depleted, I was like disintegrating, you know? So I bet, and I’ve had a slow climb out of it ever since.

So my guess is I’ll get another one in six to 12 months and maybe it will show some improvement. Cause that’s my biggest concern. And with someone with a collagen disorder, a connective tissue disorder, the research does suggest we’re at more risk for developing osteoporosis.

Ginger Garner PT, DPT (51:43)
That’s another area that’s very much needed for robust research and we just don’t have it. What we do need to advocate for in our individual therapy and our individual medical appointments, and this is just speaking to everyone listening obviously, is to make sure that you get a DEXA as soon as you can. There are a lot of pop-up DEXAs in wellness clinics now that can be as little as 50 bucks, $99, and you can get that done.

Libby Hinsley (51:49)
Yeah.

Cool.

Yep.

Ginger Garner PT, DPT (52:13)
I actually just popped into one today as a matter of fact. Yeah, one in the clinic now that I work in is test driving one. So of course I got in as the test driver for it. I had got a DEXA last year, but just in studying, I was studying for another post-grad thing, because that’s what we do, right? We constantly are like studying to learn something new.

Libby Hinsley (52:15)
cool! Yeah! Good!

Yeah.

Ginger Garner PT, DPT (52:41)
and I was studying for a test and when I realized what the guidelines were, I was like, that is such a massive disservice to women. It also speaks to, as a woman, if you’re perimenopausal or menopausal, it’s a good idea to go onto the NAMM site, North American Menopause Society, at menopause.org and look for a menopause literate provider. Now, just because they’re on the list does not mean they will necessarily be a menopause literate provider.

Libby Hinsley (52:49)
Mm-hmm.

Ginger Garner PT, DPT (53:10)
But let me tell you, if they’re not on the list, they are probably not menopausal literate at all, and they might lead you down the wrong path, which means delaying estrogen, delaying testosterone, and other things that may actually be needed now. Progesterone is one of the first things that would be needed. But when you talk about bone density, of course, we’re talking about estrogen and testosterone. But it’s those things that were completely neglected, even as little as two years ago, utterly neglected because of operating on old evidence.

Libby Hinsley (53:39)
Yeah.

Ginger Garner PT, DPT (53:40)
So everybody go get your DEXAs.

Libby Hinsley (53:43)
Yeah, mean, absolutely.

And the thing is, it’s like, I just, can’t say enough about our need for challenging our tissues at a level that is tolerable so they can produce an adaptive response so that we can actually build muscle mass so that our muscles are doing their metabolic magic stuff in the background, but we can’t, know, in metabolizing blood sugar and doing all the things that muscle tissue does.

Ginger Garner PT, DPT (53:55)
Mm-hmm.

Libby Hinsley (54:11)
aside from opening doors, you know, it’s a metabolic machine and you know, it requires us to look at our body, understand it, not be afraid of it, all those things we talked about and then say, you know what, this body is strong. It is designed to be strong despite its limitations and its unique needs and stuff on this realm. We have a path forward to help it mount an adaptive response and feel better and be more capable of handling the stresses

Ginger Garner PT, DPT (54:13)
Yeah.

Libby Hinsley (54:41)
of life, both mechanical and otherwise, and it’s about longevity, really.

Ginger Garner PT, DPT (54:47)
Mm-hmm. Well, that’s well said. Speaking of that, let’s talk about action steps they can take. So we’ve talked about a little bit of advocacy of doctor shopping when necessary because you may not get the answers you want, of looking for literate docs in various fields, of getting the DEXA as early as you can, especially if you have a history of osteoporosis in your family, endometriosis or hypermobility. Go and get that.

But some of the things that we can do, let’s talk about some of that, let’s take a couple of minutes and just talk about other action items for them. I know that you know, I know that we know how important breathing is for inter abdominal pressure regulation and spinal stiffness and security and stability in hypermobile individuals who also have probably pelvic floor dysfunction too. So what are some of the ways that you have found that breathing is just like,

know, an instrumental part or maybe it’s the way they start.

Libby Hinsley (55:51)
I think it’s the way they start. It’s a really good starting point. I often will focus on, ⁓ gosh, the diaphragm, the lower half of the rib cage as the epicenter of the movement of the body. This is where the diaphragm moves us. And so many hypermobile people are so rigid through their trunk.

Ginger Garner PT, DPT (56:14)
Yes.

Libby Hinsley (56:14)
through their rib cage

and the ribs just can’t move because they’re being braced, you know, as a kind of a compensation for extra wobble. this attempt by the body to create some stability where there’s not enough already, but it’s a dysfunctional way to do it. And it leaves us without our big moving part with the breath, this rib cage and it’s.

Ginger Garner PT, DPT (56:38)
Yeah.

Libby Hinsley (56:39)
the strength of our diaphragm, the strength of our intercostal muscles. And so when we don’t have that movement and we just like move at the belly and then up here, we have all this neck, all chronic neck tension and neck pain, and that’s almost universal among Bindi people. And I do think it has to do with breathing mechanics. So I like to do resisted breathing.

with like stretchy band around the low ribs. And that’s a nice tactile cue to help people become aware of that part of their body and start to invite some movement with the breath. And they have some resistance, which helps us feel stuff. Bendy people often need more resistance, whether it’s the breathing exercise or hands-on tactile cue, they need more input to connect.

Ginger Garner PT, DPT (57:18)
True. Yeah.

Libby Hinsley (57:22)
So I like the resisted breathing for that a lot. And sometimes I’ll have them continue to wear that during other types of exercises or during their whole yoga practice. They could just keep that on as a, to keep anchoring their breath, not so low, as long as we’re in gravity, you know, if we’re relaxing on the ground, cool, belly is super soft and floppy, right? But if we’re in gravity, we kind of need that, the breath to be our buoyancy.

It’s part of our postural support. have to learn how to get it in the middle of where we’re used to putting it. Does that make sense? Yeah, that’s awesome.

Ginger Garner PT, DPT (57:57)
Mm-hmm. Mm-hmm.

I love the breath imagery that you’re talking about there and use of the breath. You mentioned the stiffness and I’m just like shaking my head. Yes, yes, yes, yes. I see that all the time. The body will create stability wherever it can get it. And sometimes that’s creating rigidity and fear of movement in the brain or rigidity in the rib cage, like you mentioned, or in the mid spine.

Libby Hinsley (58:23)
Yep. Yep.

Yep. Yes.

Ginger Garner PT, DPT (58:26)
or rigidity in the pelvic floor

because the breath should move the pelvic floor as we know on an inhalation. So if everybody takes a deep inhale right now and you let the belly and the ribs expand, you should feel the pelvic floor stretch downward. But too many times it doesn’t. That particular case that I was referring to earlier when this particular individual came in,

Libby Hinsley (58:32)
Yeah.

Ginger Garner PT, DPT (58:54)
There was only about six millimeters of movement on ultrasound imaging when I looked at their breathing. Okay, six millimeters if you get out your measurement tool. That is not much of anything. And we need a lot more movement than that. Or the pelvic floor just becomes, I just think of it as being afraid, like tight, rigid, and afraid, afraid to move because of the lack of breathing there.

Libby Hinsley (58:59)
Mm-hmm. Mm-hmm.

tiny.

Yeah.

Yeah, so I mean it also highlights a bit of a counterintuitive point about hypermobile people, which is that their muscles are usually really tight. They’re chronically contracted. So that’s what we’re talking about, the pelvic floor muscles.

the muscles around the rib cage and they’re bracing like they’re like you described them and they can’t move. Therefore they cannot work well. So it doesn’t really help to create more rigidity in the trunk with like certain, you know, core stability exercises, blah, blah, blah,

Ginger Garner PT, DPT (59:36)
Yeah.

Libby Hinsley (59:51)
if these parts can’t move well. So it sort of feels weird to people to work on mobility in some ways, or to kind of improve the flexibility of certain parts before we have our full team of trunk muscles that now they can start to manage inter-abdominal pressure better under some loads. But if they’re rigid, they cannot do that job.

Ginger Garner PT, DPT (1:00:11)
Yeah.

Yeah.

Libby Hinsley (1:00:14)
And those are the hypo mobile parts, pelvic floor, rib cage, mid spine and shoulders actually. Bendy people very often don’t have full shoulder flexion range of motion. They got 160, 150 and then beyond that they just throw their spine around. It’s really wild these patterns that you start to see in this population that are kind of surprising.

Ginger Garner PT, DPT (1:00:37)
So you kind of just answer my next question actually, that’s very intuitive. I was going to ask, if someone with endometriosis suspects they may also have a hypermobility disorder, what are some key signs they should pursue further evaluation?

Libby Hinsley (1:00:57)
it’s tricky because it’s hard to find someone to evaluate it.

Ginger Garner PT, DPT (1:01:01)
That’s true, that’s true. But that’s why you’re here and talking about

it. And that’s why you do your continuing education and things like that. if they see these particular signs that warrant further evaluation, what would some of those be? And they can overlap, because of course, we can’t just definitively say, if you have A, B, C, D, and F, then it’s going to be A.

Libby Hinsley (1:01:11)
Mm-hmm.

Yeah.

Well, you know, the hypermobility assessments that are out there that are commonly used to assess for generalized hypermobility are really problematic. They’re limited. So what I would say mostly is when you Google those like the Biden scale, the nine point scale, do not

Ginger Garner PT, DPT (1:01:41)
Yes.

Mm-hmm.

Libby Hinsley (1:01:48)
be deterred by a low score on that. You might score low on some of these joint assessments and still have symptomatic generalized hypermobility. See it all the time because they’re just they’re not comprehensive.

But you might have been told that yoga or Pilates or dance, if you have a history of gymnastics, dance yoga, you can almost guarantee that you’re hypermobile. If that became your thing as a young person, it would not have become your thing. You wouldn’t have excelled at those things if you didn’t have some level of hypermobility, most likely. So that’s a giveaway. When someone tells me they have a history of dance, yoga, ballet, you know.

Ginger Garner PT, DPT (1:02:29)
Yeah,

gymnastics, yeah.

Libby Hinsley (1:02:31)
Gymnastics, yeah,

yeah. Then the dizziness is such a common one. The low blood pressure tendencies when you stand up and you get dizzy, or the brain fog, the fatigue.

and pain, but myofascial pain, joint pain that just doesn’t make sense. you’ve had a lot of times there’s the testing’s all normal. The labs are normal. The x-rays are normal. And yet there’s pain. Those would be some big flags to say, no, you could pursue this. Keep looking into it. I will say there’s a terrible trifecta.

which might actually pull in endometriosis a little bit. The terrible trifecta of hypermobility is bendy, itchy, and dizzy. There’s the joint issues, the musculoskeletal hypermobility and other related things. There’s the dysautonomia or the dizziness tendency. And then there’s the itchiness, which is that mass cell component where I get splotchy, rashy, sensitive skin, GI issues, headaches, brain fog.

And those are the things that are kind of implicated in the endometriosis relationship, I think.

Ginger Garner PT, DPT (1:03:41)
Yeah, that is

such a good way to look at it. So can you give everybody the trifecta again?

Libby Hinsley (1:03:46)
Yeah, the trifecta is my shorthand for it, which my colleague came up with, bendy, itchy, dizzy. Yeah. And that is hypermobility. The itchy is mast cell activation syndrome, or let’s say dysregulated mast cells. And then the dizzy is dysautonomia, heart rate and blood pressure issues.

Ginger Garner PT, DPT (1:03:52)
Bendy, itchy and dizzy.

Libby Hinsley (1:04:10)
they so commonly show up together and everyone has it. So they’re different so differently. So like I have a lot of bendy and dizzy and I don’t have a ton of itchy in my pie. Someone else might be primarily dizzy and itchy. ⁓ but not so bendy, right? The bendy thing doesn’t jump out at you or any of those combinations. ⁓ that’s a really good, ⁓ thing to look for.

Ginger Garner PT, DPT (1:04:38)
That is, that’s a really great

way to distill it. And it also helps you advocate moving forward with healthcare providers to trust yourself and not be deterred from getting the help you need. Now, go ahead.

Libby Hinsley (1:04:50)
Yeah. And do not, one thing I’ll

also say, if you’re pursuing diagnosis or treatment for all these things, do not buy the story from your doctor that says there’s no reason to diagnose you because there’s no treatment. That is a sign of a doctor that doesn’t know anything about this. That is not true. There is so much medically that can help manage these conditions. And the problem is a lot of doctors don’t know about it yet.

Ginger Garner PT, DPT (1:05:08)
Ha ha ha!

Libby Hinsley (1:05:18)
They don’t know that they have medications to help you manage your mast cells and your dysautonomia. When there’s a low hanging fruit, it’s not even pharmaceutical that can help. So I hear that all the time. My doctor said there’s no reason to diagnose this because they don’t have anything to do with two for it.

Ginger Garner PT, DPT (1:05:26)
Mm-hmm.

That’s terrible. Well, now you all know that that’s a lie and it’s just, that’s code for they don’t know what they’re talking about. Yeah. And instead of helping you, they’re just using, they’re pulling an ego and just saying there’s nothing to be done. So that is hugely illuminating for those of you out there who are struggling with it. So I have like kind of one, maybe two questions left. I have a bunch of questions. Maybe we’ll have to do a part two at some point.

Libby Hinsley (1:05:35)
It is.

Yeah.

Yep.

Ginger Garner PT, DPT (1:06:06)
When you’re feeling overwhelmed with hypermobility and or endometriosis and you have all these symptoms and a lack of medical support, obviously you can resource the, you can source the resources that we’re about to share with you now that we will put in the show notes, links you can go to where you can find Dr. Hinsley. But what changes would you like to see based on that? Like when they’re feeling overwhelmed, they’re not getting the help.

we need. I know that you have laid in bed at night thinking about this. What changes do you want to see in the medical and rehab communities to approach these overlapping conditions?

Libby Hinsley (1:06:38)
Yeah.

So much, so much. just wish I had a hundred, a thousand of myself who was just going around giving in services at every primary care doctor’s office. Cause it’s primary care who’s gonna have to step up and deal with these things. The specialists just simply aren’t gonna do it. They don’t want to. And you know, some of them do of course out there, it depends on where you’re located. Where I am, it’s bad. In primary care, poor things, they have…

you know, overly full plates. But that’s where I’d like to see the change at primary care. Cause this is a patient who goes there and primary care does their job of referring out and they get nowhere. They wait months and months and months for these specialist visits and they get gas lit and now they’re back. It’s a little boomerang and primary care is like, ⁓ I don’t know what to do with this patient. Right now they’re getting stressed out because they’ve done what they think they’re supposed to do.

Ginger Garner PT, DPT (1:07:12)
Yes.

Libby Hinsley (1:07:36)
and it’s stressful for them. So I’d love to see lots more education for primary care providers. I want them to be more confident and able to diagnosis. Go ahead and make diagnosis. my God, it’s so important. You know, for hypermobile EDS, it is literally a checklist. You check off the boxes and if they check enough boxes, they have the thing. That’s what it is. Go ahead and do it. No one else is gonna do it, but that diagnosis.

whatever it is, if it’s HSD, like if they have symptomatic hypermobility, but they don’t meet the criteria for EDS, diagnose them with hypermobility spectrum disorder so that this person knows this is a thing. Now I can learn about it. Now I can stop chasing a diagnosis and try stop wondering what’s wrong with me. Now I have an answer and I can move forward with my life. It is so empowering and such an important step. If I could go do anything differently in my own life, I’d become a PA because it’s quicker and I could sit in an office and I could

diagnose things all day long. That’s what I do. I would just diagnose people with EDS and then I would treat them.

Ginger Garner PT, DPT (1:08:37)
It does, yeah, well it does actually

call for, and this would be more policy related, but it does call for a reevaluation of scopes of practice for people. Because if you’re charging a primary care physician who has no experience in evaluating any of these things, and you’re charging them with diagnosing something that they aren’t really qualified to do or trained to do,

Libby Hinsley (1:08:49)
Yeah.

Yeah.

Ginger Garner PT, DPT (1:09:02)
then it makes sense to evaluate scopes of practices for other healthcare providers who can actually diagnose this and treat it. I think our system is a whole lot broken. I was gonna say a little bit, but I’m just gonna be honest and say it’s a whole lot fractured. It’s a whole lot broken when PCP is supposed to diagnose everything from candida to a common cold to ordering imaging. And we know if we look at imaging studies that quite often,

Libby Hinsley (1:09:16)
Yeah.

Mm-hmm.

Ginger Garner PT, DPT (1:09:30)
imaging that’s ordered through PCP may not be appropriate at all. Whereas if they would come to a physical therapist who specialized in this, they could get their imaging, their diagnosis, their treatment, everything done. It would save time, it would save money for the person, for the system. So I think if we could revise what we’re able to actually do from a physical therapy standpoint, that would be a worthy task.

Libby Hinsley (1:09:34)
Yeah.

Mm-hmm.

Yeah, never even thought.

Ginger Garner PT, DPT (1:09:58)
One thing I was gonna ask is…

Is there a list where for HSD and EDS, can you point the listeners toward a list that would allow them to kind of check some boxes to see if they need to go in that direction? And I think you were gonna say something else, so I didn’t wanna interrupt you there.

Libby Hinsley (1:10:17)
that’s okay. I just never thought of that. Like that would solve the problem. If PTs could provide a medical diagnosis. Wow. You know, and then

Ginger Garner PT, DPT (1:10:21)
Yes.

for something

that’s very, very much in our wheelhouse. It is a musculoskeletal diagnosis, which we can diagnose in that wheelhouse of musculoskeletal health disorders. It just makes sense that if the Army is using PTs as a primary care point, and they have saved so much money, and their outcomes are much better, and their imaging ordering, the appropriateness of imaging ordering, and the amount of ordering

Libby Hinsley (1:10:29)
Exactly.

Yeah. Yeah. Yay.

Ginger Garner PT, DPT (1:10:54)
for imaging is much lower, in other words, the care is much better, then the civilian world should be following suit.

Libby Hinsley (1:11:00)
Totally agree. Yep. And then, you know, we need more PTs too who are well-versed in this, you know, and, but they’re the ones who have the background understanding for this to all make a lot of sense and they see it all the time. They already are seeing it all the time. And they don’t, we don’t learn about it in PT school. I didn’t learn about it in PT school and I have EDS and I would have never in a hundred million years thought I had EDS based on what I learned about it that one day at PT school. That’s a problem, you know.

Ginger Garner PT, DPT (1:11:26)
Same thing goes

for pretty much anything. If you talk to any healthcare provider, everything that you use in practice, you really didn’t learn any of it. You learned basic science and modalities and stuff in your formal education program, but everything that you know that you practice every day, you took continuing education courses for, you did specialty training for, and I think that’s true with PCPs. I doubt they learned a single thing about hypermobility too. So we’re kind of all in the same boat. I think we need to…

Libby Hinsley (1:11:44)
Mark.

Yeah, yeah, yeah, that’s true.

Ginger Garner PT, DPT (1:11:56)
shift our thinking on policy and advocacy for that. But to get back to that other question, is there a place where people can go A, where can they find you? And B, is there a place they can go for those type of checklists so they can see, my gosh, I might have so many of those things. Let me take this information to my provider.

Libby Hinsley (1:11:59)
Yeah.

Mm-hmm.

Mm-hmm.

Totally. So the first rabbit hole you want to go down is the Ehlers-Downlose Society website, ehlers-downlose.com. So it’s just search for the EDS Society, Ehlers-Downlose Syndrome Society. Tons of information. You can download the PDF, HEDS diagnostic checklist. It’ll go through all the types of EDS, how they’re diagnosed. You’ll find all the information and they have a provider directory. And it’s not to say everyone’s on there who knows about these, but at least

There’s some there, you can start there and in your area search for somebody. Also word of mouth, there are tons of people out there, you’re not alone if you’re thinking you have these conditions. So hopefully you can connect in your area. I there’s like a Facebook group in my area, things like that.

Where you can find me is LibbyHinesley.com. That’s my website. So that’s sort of the, go there and find everything. You can find me on social media. I’m most active on Instagram at LibbyHinesleyPT. Yeah, that’s about it.

Ginger Garner PT, DPT (1:13:19)
All right, well thank you. Thank you so much

Libby for being on the podcast today. All of the resources that were mentioned are going to be shared in the show notes. So you can just go and click on those live links wherever you get your podcasts. And I think y’all would probably agree we might need to have Dr. Hinsley back for a part two at some point, right?

Libby Hinsley (1:13:41)
Well, and I want to have you on my podcast, which I didn’t mention, which is all about hyper mobility. So that’s another good resource. Zebra is called Zebra Talks podcast and I, Zebra Talks podcast. And I definitely want to have you on so that they are next combo.

Ginger Garner PT, DPT (1:13:44)
Yes.

Yeah.

Zebra Talks podcast. Okay. ⁓ thank you. I would love to

chat about that. So you guys check out Zebra Talks podcast also, and don’t take no for an answer. Trust yourself. Trust your body. Your body is smart.

Libby Hinsley (1:14:06)
Yeah, that’s right. That’s right.

Yes. thank you so much for having me.