The Thinking Practitioner Podcast:

Episode 170: Hypermobile Ehlers-Danlos, Fascia, & Pain (with Tina Wang) Listener Favorite

Whitney Lowe  

Welcome to the Thinking Practitioner podcast,

 

Til Luchau  

a podcast where we dig into the fascinating issues, conditions and quandaries in the massage and manual therapy world today.

 

Whitney Lowe  

I’m Whitney Lowe

 

Til Luchau  

and I’m Til Luchau.

 

Whitney Lowe  

Welcome to the Thinking Practitioner

 

Til Luchau  

this conversation with Dr Tina Wang is one of our most listened to episodes, and for good reason, she gets into why people with extra flexible tissues often have more pain, not less. What she’s finding in ultrasound about fascia changes in hypermobile people and the paradox of tissue that feels mushy to our hands but won’t glide or give it first appeared as episode 79 and if you want to go deeper, Dr Wang offers a one hour class on hypermobility for bodyworkers in our Subscription library at Advanced-Trainings.com. We’ll link to that in the show notes too. But first a quick word from our amazing sponsors, and we are glad to welcome Deep Roots Massage and Bodywork in Keene, New Hampshire as a new supporter of the Thinking Practitioner. Deep Roots is a massage practice that’s expanding into continuing education for massage and bodywork professionals, and like us, they’re drawn to the art and science of evidence-informed practice. They’ve built a reputation for hosting carefully curated hands on workshops with some of the field’s leading instructors, and they keep class sizes small, so that you can actually get individualized attention and a kind of substantive group discussion that moves your practice forward. This year’s lineup includes Advanced Myofascial Techniques with me and my team for Whiplash and Acute injuries; visceral anatomy and manipulation, Thai massage and then a Leg, Knee and Foot master class with me, Til Luchau, this fall. To see the full schedule and to register visit deeproots.mb.com. that’s deep roots. M, like massage. B like bodywork, all one word dot com, and use the code “thinking” at checkout to save 10% on any upcoming workshop. Books of Discovery has been a part of massage therapy education for over 20 years. 1000s of schools around the world teach with their textbooks, e textbooks and digital resources. Books of Discovery likes to say, “learning adventures start here”. They see this same spirit here on the Thinking Practitioner podcast, and they’re proud to support our work, knowing we share their mission of bringing the massage and bodywork community enlivening content that advances our profession. 

 

Whitney Lowe  

So check out their collection of E-textbooks and digital learning resources for pathology, kinesiology, anatomy and physiology at booksofdiscovery.com where Thinking Practitioner listeners can save 15% by entering, thinking at checkout. So Til , how are you today? Doing very well. Whitney, how about yourself? I’m doing very well. We have a special guest joining us again today. And who is our guest today? Oh, well. Our guest welcome. Dr. Tina Wang, I’m so glad you could take the time to join us.

 

Tina Wang  

Yeah, thank you for having me. I’m excited to be here.

 

Til Luchau  

I’ll go ahead and introduce you, but then I want to hear a little more about you and your work. You are a board certified physical medical medicine and rehabilitation medical doctor with a special focus in the emerging field of fascia, which is how I came across your work. I saw you present at the Fascia Research Congress in Montreal. You are an assistant professor at medical schools in Southern California, and you’re on the core faculty for the musculoskeletal curriculum, including the use of ultrasound based diagnosis and interventions. Your published research focuses on ultrasound characteristics of fascia dysfunction to improve clinical understanding diagnostics and treatments of myofascial pain syndromes, Ehlers-Danlos syndromes and hypermobility spectrum disorders. Very interesting. You have a private practice. Doesn’t stop there. You have a private practice where you see people with H, E, D, S or the hypermobility version of Ehlers Danlos Syndrome, and you’re the founder of The Brain Cell, a startup dedicated to evidence based neurofacial inflammation education for professionals. Wow, it’s great to have you here. Anything else you want people to know about you and your work before we get into it?

 

Tina Wang  

Yeah, absolutely one of it’s been a journey working with hypermobile Ehlers-Danlos, the population, and I’ve learned a lot about myself, as well as fascia working with this population. Not a not a boring day goes by very interesting group to work with,

 

Til Luchau  

Very interesting group, very interesting condition and some interesting quandaries. I mean, I’m sorry to interrupt you, but I got interested in talking to you about all this and your work, because it’s a puzzle. You know, people with hypermobility symptoms tend to be more flexible. In their tissues, and yet they often have more pain, and that is counterintuitive for a lot of people who were trained in a soft tissue approach that emphasizes relaxing or mobility. I think okay, so, if they’re relaxing or what do they hurt more? So I hope we get to that, but sorry. Back to you, back to your your own journey and your own interest there.

 

Tina Wang  

Yeah, you know that that is one of the conundrums that led me to to conduct my research, because I would say clinically, I’m not seeing that clinically, yes, they can bend over, touch the floor, bend their elbows back over 10 degrees in hyperextension, but the tissue is not moving and passive tissue stiffness is not consistent with what I would see in someone who’s very, very gliding, mobile. And just to add to that, 30% – 25 to 30% of the population has generalized hypermobility, and when you touch their tissue feels great, feels normal. I wouldn’t even think to go checking. And it’s oftentimes that I go checking because they say, well, so and so in my family has hyper mobile EDS. Can you check me? I’m super bendy, and under ultrasound examination when it’s not pathologic, when it’s just a phenotypic expression just occurs naturally in the environment and there’s no pathology. The tissue looks great under ultrasound. Tissue feels great when you’re treating the client or the patient.

 

Til Luchau  

Feels great to our hands as manual therapy practitioners.

 

Tina Wang  

And like, like any other tissue would

 

Til Luchau  

Yeah. 

 

Whitney Lowe  

Can you tell us a little bit about what you would see, or what do you perceive on ultrasound? Is the distinction between those individuals with the different tissue types? How does it look different?

 

Til Luchau  

And I’m sorry, can I back up one step? Can we just, for our audience, say what EDS is or what? Should we start there, and then let’s, let’s let’s dive into that question. Yeah, how do you answer that question? Dr Wang? 

 

Tina Wang  

So there are 13 different subtypes based on the 2017 nociological classification. So that’s how we classify what type of connective tissue, Ehlers- Danlos, you have. And of those 12, we have known genetic variants, and they’re really rare, and they run in families. And we do genetic testing and on physical examination, there are very, very clear signs that show up and and those, some of those are very, very worrisome, and that’s what we’re really as clinicians, thinking about when we’re screening

these patients, we don’t want to miss miss some of these subtypes. Then the 13th subtype, which is the overwhelmingly most common one, is the hypermobile type. And that diagnosis is not based off of genetic testing, it’s based off a clinical diagnosis. And there are three parts to that diagnosis. The first part is, are you generally hypermobile? So that’s part A and again, we had already said 30% of the population is generally hypermobile without issues. So I’ve seen that occur where and can you imagine that? That’s 30% of the population. So if you’re labeling 30% of the population with hypermobile EDS,

 

Til Luchau  

yeah,

 

Til Luchau  

 that’s huge. Well, and so what? But what is the definition that case of hyper mobile? How are we describing there’s,

 

Tina Wang  

yeah.

 

Til Luchau  

symptomatic. You’re saying

 

Tina Wang  

Yeah. There’s a Beighton score that we use. So there’s a cut off based on age and gender assigned at birth. And so it then, if you do meet that criteria, we have to move on to B and C.

 

Til Luchau  

Give me a sense of what the criteria are. Is it the amount, gross amount of movement? Is it what? How do you go by determining this. 30% are hypermobile, but asymptomatic,

 

Tina Wang  

Right? So B criteria, that b part is what, then, is manifesting in the tissue? So, systemic manifestations, what’s the shape of the jaw? What it what are the heart valves doing? How long is that arm? How long are those spindly fingers? And you can’t tell. So when I first started doing this, I first, I wouldn’t I never even thought that I had hypermobile type EBS, and you can’t quite tell. I always thought I had short, stubby fingers. But you need to do measurements. So part of that is we do measurements to be more precise.

 

Til Luchau  

Okay, I’m learning something already, and I’m pulling up this file in my own memory, but I don’t want to presume anything. There are different proportions to different body parts in this group we’re calling hyper mobile EDS, and one of them is the longer fingers. There’s some other ones as well,

 

Tina Wang  

yeah, and long arms. So you wouldn’t be able to tell you, just gotta, you have to measure. And I never thought I had long arms relative to my height. 

Whitney Lowe  

So let me also backtrack for just a second when we said you if I was hearing correctly, 30% of the population has hypermobile EDS? Is that correct?

 

Tina Wang  

So, no, no, 30% of the population has asymptomatic, general hypermobility. 

 

Whitney Lowe  

Is generalized hypermobility at 30% that’s what I was missing, because I was going to ask, well, how, what was the population that just has hypermobility, that may not have the EDS presentation.

 

Tina Wang  

So, and 30%

 

Whitney Lowe  

is due across the board. Okay, got it,

 

Tina Wang  

And a very small percent, and it looks like it’s maybe about, you know, it depends on who’s estimating and which study, but it can be as few as point 2% to as high as 4.5% and so you really can’t tell by looking at someone if they have that, because I hear that a lot. Oh, I’ll walk around. And now I can see, I can see they have, and well, there’s a lot of variables to meet the criteria, and

 

Til Luchau  

and shape or proportion is just one of them,

 

Tina Wang  

right, right? And listening to the heart The echocardiogram heart valves, looking at how stretchy the tissue is. So we want it to be stretchy, but not pulling off, because once it’s too hyper extensible, then we’re really suspecting a genetic form or other cutaneous manifestations of pathology that may be, you know, not related to Ehlors-Danlos, if it’s in a in a localized area. So then our our diagnostic framework starts widen based on if the tissue is way too stretchy, and we check on the neck and on on the wrist. And then the the one of the most common ones, almost across the board, every single patient that I see has are piezogenic papules. So you have them stand and out of the connective tissue, the fascia of the heel, the fat herniates out, and you’ll feel the little papules,

 

Til Luchau  

the heel, the fat pattern, the heel, okay,

 

Tina Wang  

right? And so the last part of the diagnostic framework, then, is the most difficult, and that one’s the exclusionary diagnosis, and that’s really looking at forms of neuromuscular conditions that can mimic or co occur with hypermobile Ehlers Danlos, and that that one is challenging. Part of my background is

extensive neuromuscular training. So even though I’m not sub specialized in it, I’ve worked long enough in neuromuscular medicine, trained underneath neuromuscular medicine physicians, and then now I have the privilege of working with them that I can identify. I may not know what to do, but I can say that’s there is something we’re missing here, and we need additional workup, and that I have a very low threshold for. So I’m not so much interested in if you have hypermobile EDS, great, but I am worried if we’re going straight to that and we’re missing some other diagnoses that needs extensive workup, and that’s where I’m really thinking. What I’m thinking about when a patient comes in is, let’s make sure we’re not missing anything.

 

Til Luchau  

So you’ve given us a really clear and detailed answer about diagnostic criteria and this process you go through in as a physician now, as a as a massage therapist, say, what would be important for them to know at this point, what would they be? What was some red flags or things to begin to suspect this kind of condition?

 

Tina Wang  

Well, you know, I have a two-fold answer to that. My referrals from massage therapists have almost always been spot on. So you get referrals from physios, from other medical doctors, from whomever specialist, and when they come from massage therapists, they’re almost always like, yep, you have Ehlers Danlos. And what it is is the tissue quality. It feels like non-scientific term mush, and it’s this uniform, sponging mush. You feel like it there’s going to be liquid that comes out last time when you palpate and. That is almost always there, not, not, not all the time. Some, some of my patients are very, very thin, and so, yes, it’s there, but it makes palpation a little bit more challenging, because there’s such little tissue to palpate through, but that that would be really one of the when I received referrals from massage therapists, that’s what they’re feeling, and they’re feeling this lack of glide in there too. Just something is not quite right.

 

Til Luchau  

Okay, so that’s the paradox of the mush and the lack of glide. I don’t know if it’s paradox too, but that seems paradoxical to me. But no, I know exactly what you’re talking about in terms of the feel, the tissue feel, but then you say, and also a lack of glide. What’s that? How does that manifest?

 

Tina Wang  

So, right. So this goes back to that question that Whitney was asking before we got into the definition.

 

Til Luchau  

Yeah.

 

Tina Wang  

And so that is what I noticed on examination, was that the tissue, when we’re palpating and assessing for glide, it’s not there, and they’re describing stiffness. And my own experience is I feel so much better when I stretch. And so the old adage that if you have hypermobile EDS and you cannot stretch is complete hogwash, because I’ve heard from your other episodes, there’s a million different types of stretching. You can’t lump that into one category. And so they’re telling me that they feel stiff. The tissue

is not lighting and it seems to be spongy and uniform and in density all the way through. So then you have these conversations with your colleagues, and they say, Well, you don’t know what you’re talking about. They’re super bendy. They can hyperextend. And I say, Well, okay, then what you know, I You always wait around for someone else to do the study, like, well, I’m, I’m going to, I’m going to prove it, or let’s at least look so with the ultrasound, of course, with Antonio’s study, Antonio Stecco study of the sternocleidomastoid, very easy area to study. So he encouraged me to look there.

 

Til Luchau  

This is 2014, 2016 something like that, a study where he found changes or differences in sternocleidomastoid fascia and people with and without pain, if I’m remembering that correctly,

 

Tina Wang  

yes. And it was thicker in those with pain, yeah. And so I was certain I was going to see something similar. I just didn’t think that it would be so profoundly thicker. So he showed greater than 1.4 centimeters. I found at that it was actually 1.8 for Ehlers Danlos, so quite a big, a big difference, significantly. And I have elastography, so that measures stiffness of tissue. So you put the probe on for the ultrasound, and it’ll show you relative stiffness. And it seemed to be pretty uniform in the Ehlers Danlos population, which I didn’t expect to find, that I was pretty open, like, what are we going to find here in subjects with neck pain, who were not hyper mobile, there was a soft softening in the deep fascia relative to a increased thickening in the muscle and the muscle muscle stiffening was not uniform. So it was this non uniform muscle stiffening with a relative softening in the deep fascia that I did not expect to find. I always thought, you know, following everyone’s work in the fascial field, that I thought I’d see stiffening in that D fascia, that must be where it’s coming from, and that that’s always a humbling experience. What do I do with this? Is this contrary to what we believe? Is this even publishable? Do I even want to do I even want to send this email to Antonio telling him, this is what I found.

 

Til Luchau  

This is what caught my ear. In Montreal, you are coming up with non intuitive findings around stiffness, you’re finding that they’re less stiff in people with pain and more uniform in people with EDS. Was that? How did that contrast with what you were trying to figure out you’re trying to figure out Whitney’s question like, What are the tissue level differences in hypermobility, is that correct?

 

Tina Wang  

Yes, yes. And then in people with pain too, because I’m not seeing that right. When they do those elastography questions, they’re measuring the stiffness of the muscle. Everyone’s paying attention to the muscle, and the muscle is extremely important. It’s mostly connective tissue. We have to look. At its relationship to that deep fascia

 

Til Luchau  

and under our hands. I mean, I can just imagine or feel what you’re describing, the uniformity, the sponginess you called it on one hand in the EDS folks, and less uniform, and a bigger difference between muscle and deep fascia on the in pain, non EDS people. So I’m just, I can just picture feel how that would be. And you said that was a surprise to you,

Tina Wang  

Right. I expected the densification, or the what it that is defined as, is an aggregate, a non functional aggregation of the extracellular matrix content, including what Antonio steco studies the Hila Ronan. And so these pathologic non functional aggregations, then are stickier. And so I thought, sure enough, the sticky glue should be stiff, not necessarily. There are two different properties, gliding and actual stiffness. And that was a real, a real surprise to me. And what I really learned is that we cannot separate muscle from deep fascia. We have to look at and then superficial fascia. What is that? How is that functioning as a unit? And then what are the additional properties in terms of gliding and even nerve content that might become pathologic over time?

 

Til Luchau  

Yeah, Whitney, I’m thinking this is you had a question that you were pondering. I’m wondering if this is a good time for it,

 

Whitney Lowe  

yeah, if I can slip in another one before that, too,

 

Til Luchau  

sure. Yeah. Let’s just

 

Whitney Lowe  

walk us

 

Til Luchau  

through it. Yeah.

 

Whitney Lowe  

And this is kind of like for personal clarification here, too, to some degree, because this is something I have always heard for a long time when I was, you know, trying to understand and grapple with something both my mom and her brother had, eds at a pretty significant level, does in when we talked about the diagnostic criteria, we were told early on that this sometimes does skip generations. Is that necessarily true, that that does skip generations in terms of that genetic disposition, or is that? Is that not what you have found currently,

 

Tina Wang  

It does so it’s autosomal dominant. So this is going to clarify it. It gets technical, so it’s autosomal dominant, so meaning, if one of the parent has a copy of this, then the likelihood of the children having it is, is 50% but just to throw a wrench in this whole concept, is that it seems to not be one gene. It seems to be maybe an epigenetic type phenomenon where a group of genes play together and so it has variable expression.

 

Whitney Lowe  

Yeah.

Tina Wang  

So that means from one generation to the next, sister to sister, mother to brother to however you want to look at it, it’s going to manifest differently, and it’s going to be more severe in one versus the other. And I think, and many of my colleagues, really think along the same line that it is the environment, it’s the epigenetics that are really turning on. The phenotypic, the manifesto,

 

Whitney Lowe  

interesting

 

Tina Wang  

symptoms. And so it may not be that you don’t have it. It may be that maybe it’s mild enough that you don’t notice. Well,

 

Whitney Lowe  

there’s a lot of things that I do notice, you know, the the skin quality, the hypermobility, the long limbs and fingers and all those kinds of things, I think do pop up in our characteristic in both myself and my sister so but what didn’t pop up was the extreme bruising and the connective tissue damaged so easily, and so we got this safe stuff. You can look at it that way, that’s, you know, not some of the things that we saw, you know, with my mom and her brother frequently, but you know that this does when you were talking about the tissue types, with what we feel during palpation. That definitely made a lot of sense in terms of what I experienced in working with her frequently, too, with the quality of those tissues. And that kind of gets into what this other question that we were pondering til and I had been talking about this, and both, you know, a good bit that trying to sort of grapple with this issue around densification and the myofascial pain. And I’m curious to hear your thoughts, if you think there is we noticed, or you noticed, at least, I think in your study saying that there was a correlation there. But do you think there is some kind of cause effect relationship between those? Because we often hear that like, is that because the densification, because there is pain, or is there densification, you know, or pain because there’s densification, etc? Do you see any kind of cause effect relationship there?

 

Tina Wang  

So it seems to be, and those are really difficult. To prove so in a separate study that I did across the board of all different patients with myofascial pain, when I and I still treat this way, so I will, I will sequence the patient using the steco methodology, and then I inject into the three different fascia layers, as described by the shoulder study. And what they had done was so interesting. They took hypertonic saline, which is the irritant, and they inject it into the superficial fascia, the deep fascia, into the muscle, and then they had their subjects characterize and describe the pain. So I thought, oh, boy, this is so interesting. So basically, if I can get the patient to describe the type of pain they’re having, then I can inject into that layer with saline, and the saline will wash out those inflammatory mediators that we find in these quote, unquote, trigger point areas, and it will also serve to manipulate the tissue, much like you would with a finger. But I’m going to do that with saline. And I learned how to do these injections around nerves. We call those hydro dissections of nerves, of intrapped nerves.

 

Whitney Lowe  

Can I pause just a second and ask this before we go on? Because I’m really curious about this. Some of those fascia layers are so thin, how do you get precise with those injections into those specific layers

 

Tina Wang  

Under ultrasound guidance with itty bitty, tiny needles, and that I learned from my friend Kentaro Onishi, he likes to inject stem cells through itty bitty, tiny needles. Wow. And it’s for patient comfort, and I was always inspired by that, so I use the tiniest needle possible, and we go into these layers. And yes, it’s challenging to see under ultrasound, but yes, you can with good skills. You can see where you’re injecting. And in this study, I found that 75% of myofascial pain, so when I inject into that deep fascia, yes, in combination with other layers like it might be deep fascia, superficial fascia, deep fascia muscle, depending on the point, but 75% of the pain seems to resolve after I inject that deep fascia in combination with other layers. So it seems like a lot of it is coming from the deep fascia. The superficial fascia was involved in various combinations 55% of the time. So that means we have to treat that superficial layer, that in between layer, and then, if we talk about only muscle, and this is very controversial statement, when we publish this paper, it was extremely difficult. It was so controversial because of the the trigger point. Points that are done. So a lot of physicians in my field do a lot of trigger points, and then a lot of physios do the dry needling. And you never want to see anything that comes out against what you’re doing. And muscle was only involved alone muscle alone, because in in combination with these other two tissues, yes, 43% of the time you you need to treat the muscle. But if you are only treating muscle itself, it’s only 5% of the time that you’re actually adequately treating patients.

 

Til Luchau  

You’re saying that was a controversial finding because it went against the narratives that we typically use of muscle being the source of a lot of that nociceptive,

 

Tina Wang  

Right.

 

Til Luchau  

Yeah,

 

Whitney Lowe  

and if you’re finding results from injecting those what? What is this supposed mechanism of pain management or pain relief from that what do you suppose is relieving that pain from the injection?

 

Tina Wang  

I think it’s twofold. I think it’s the actual manipulation of the tissue. So if the there are glycosaminoglycans, of which hyaluronan is a type that is causing some kind of mechanical dysfunction, stickiness, then we’re opening up that tissue, and just like you would do with your finger colliding, a manipulation of tissue, and then the last part is really washing out any inflammatory mediators that are very, very, very likely present the Even digging through the literature over the last 10 years, already, the histologists were calling fibroblasts immune immune cells. They were primary Sentinel immune cells. And it’s just so interesting that I was talking to one of my colleagues yesterday,

why isn’t it? At us as physicians. Why have we not been introduced to this? Why is what I do recognizing Ehlers Danlos as this real manifestation of neuro inflammatory, fascial inflammatory changes? Why is that so avant garde? Why am I so fringe when 10 years ago, we already started, the histologist already started identifying these concepts,

 

Til Luchau  

that inflammation was involved in those kind of local, locally sensitive or painful spots, and that changing inflammation could actually change that experience as well, or that maybe that was a mechanism what you’re doing now, I want to make sure we get the right reference to what that study you’re just describing is the is the study you just described with the reduction in pain, is that? Is that a published study? Is that something

 

Tina Wang  

It is open access, and I’ll send you a link,

 

Til Luchau  

awesome. We’ll

 

Whitney Lowe  

get

 

Tina Wang  

that. Yeah, that’s

 

Til Luchau  

fascinating.

 

Tina Wang  

Yeah. And then

 

Til Luchau  

those are those numbers. Are those numbers you gave 75% of pain related to the deep fascia. That was a percentage of patients who reported an improvement in pain. I presume

 

Tina Wang  

they all did immediately after injection. That’s how I measured. Was this the tissue? Was this the correct tissue layer to treat? And then I do pain pressure threshold. Is that the same? Or do we improve?

 

Til Luchau  

Okay, great. I can look forward to reading that through. That’s fascinating.

 

Tina Wang  

Yeah, that paper is different. That one I did So traditionally, in the Ehlers Danlos population, we’ll do a headache protocol, Botox injection, which horrified me. And there are case reports, as well as

anecdotally, of patients who became destabilized and ended up having craniocervical fusion. This is not to scare people. They’re very rare. Very rare. You know, we had a discussion in my EDS echo group. That’s the professional group that meets once a month. We meet practitioners around the world, and it’s hosted by the Ehlers Danlos Society. And we’ve even had conversations about muscle relaxants in this group. And yes, there are horror stories and there are few and far be be between. The important thing to know is that every Ehlers, Danlos patient is an n of one. You can’t make sweeping judgments as a whole, like you do not do stretching, you do not do deep tissue with no that is your end of one. And you move slowly that and that’s that’s the the principle when treating these patients, just move slowly. Get to know them. Get to know their tissue, before you start hacking away, before you start throwing tons of drugs at them. Get to know the person. Get to know the tissue. Get to know how they respond. And so in that study, I noticed that they all had a very certain type of patterning, very a cervical dystonia, not severe. And to your audience who doesn’t know what that means, it’s it’s a patterning that happens into a neck, a twisting and they’re kind of locked there neurologically. And so there is a botox protocol for cervical dystonia, and I partnered up with one of my colleagues, who is an expert in cervical dystonia, and we sequenced the patients fascially, and then we identified using standard cervical dystonia protocol that most neurologists use, and lo and behold, they all kind of lined up the fascial lying dysfunction with the dystonia protocol, how you would choose which muscles based on rotation, and these, these few patients that I followed, improved, and the thickness of that sternal kaleidomastoid also decreased, and their pain

 

Til Luchau  

with simply the only intervention was the Botox injection. Is that? Right,

 

Tina Wang  

right, right and into

 

Whitney Lowe  

muscle? Interesting?

 

Til Luchau  

Into muscle?

 

Tina Wang  

Yeah,

 

Til Luchau  

yeah. So just my simple layman’s understanding, the Botox essentially relaxes the muscle at a very view. It eliminates the motor neuron input, or the effect of the motor neuron so you have complete relaxation of the muscle. Is that the primary mechanism you think that’s

 

Tina Wang  

low dose. So I’m not using that full, large dose. I’m just using low dose so that we provide a more a balance to the system. And then, why does it keep recurring? Well, I really, you know, I’m a workaholic. I can’t stop working, and I love what I do, so I took a course from Mary mastery so that I wouldn’t keep

working. Take a course to occupy my schedule, and it was one of the best courses I’ve ever taken. And she’s a pediatric physiotherapist, and she started talking. About patternings That she’s noticed in these children. And I started paying attention to to the some of these patternings in my patients, and I started to realize, boy, you know, I think Ehlers, danlos, is neurodevelopmental. They have very similar patterns to how they’re firing the muscles, and with this population, it’s really about maintenance and staying ahead. It’s not going to be about curative. But how do we help you with a maintenance program to live the best life possible, which I think can be a wonderful life, you just have to figure out how to stay on top of everything.

 

Til Luchau  

What’s, what are some of the highlights of a maintenance program? Or especially as relates to manual therapy? Does manual therapy belong in that picture? And if

 

Tina Wang  

so, how absolutely, one of the things that has come to the forefront, especially with the leaders in the alert the EDS society, is the neuro developmental neuro divergence. There is a high rate of that in Ehlers, Danlos, and after that pediatric course, I started paying attention, because neuro developmental issues and neuro divergence, they’re classified, is the same thing. And I started paying attention, and what I find, and this is just a supposition, which I’m gonna I’m in the process of writing a book, because you can’t publish this kind of stuff. It’s it cannot be proven. And one of the things that I feel strongly about is that this starts first as a neuro divergence, so meaning we’re born as Autistics, we’re born with ADHD, we’re born with our sensory issues, and now we have to fit into this world. And maybe we know that neuro divergence is has strong inheritance, so maybe our parents are pretty traumatized and they can’t provide for us skill sets and tools, and now we’re set free in this world, and from a very early age, we’re making adaptations, and that nervous system is going crazy, and where it’s going to show up first Is that superficial fascia, that autonomic nervous system. So absolutely manual therapy has a huge role. Because if we want to start to affect upstream, where we think things are coming from, that touch is so crucial, that therapeutic relationship that I know you both talk about so much, is absolutely crucial. And if we don’t have that, we don’t even have a starting point to help patients

 

Til Luchau  

wonderful and the touch being a primary channel of experience in that realm, saying in that process, what a fascinating idea. That process of becoming of development being a process of becoming neurotypical, you can say, or, or developing out of a state that’s more divergent, and the the actual interaction we have through touch could be a part of that for all of us. Did I get that right?

 

Tina Wang  

Yes, yes. And I, you know what, I can speak as my, my own experience as a neurodivergent person with autism, human connection is craved but so difficult to access, and it’s through these therapeutic relationships that we can start to tell that person, that body, that brain, that spirit, Here is a person who can be with you.

 

Til Luchau  

Nice. That’s just what that’s what our hands say when we’re doing,

Whitney Lowe  

yeah,

 

Til Luchau  

listening to our clients. When we’re sensing what’s going on, we’re getting the feedback from both their tissues and their awareness. Essentially, that’s what our hands are saying. We can be with you. This is good.

 

Whitney Lowe  

I want to ask to backtrack for a moment too, and back to when you were talking about some of the things that may be happening or occurring, and again, not to sort of scare people or over concern them, but a lot of manual therapists who might have clients coming to them with EDS, this is frequently going to be their first exposure to it. And are, I was curious if you’ve got things that you would recommend in particular, that people really think about or be particularly cautious about when somebody comes in and just, let’s say, puts on a health history form I have EDS. You know, what kinds of things should they be thinking about there or being careful of in their in their treatment with them?

 

Tina Wang  

Right? Great question So, and I’ve been there, I’ve been there on the airing portion, so they will get huge autonomic dysfunction and response. So what is that? That is the nervous system going crazy. They will report fevers, chills, catatonia. Didn’t wake up for 12 hours. That’s always a great phone call. My heart is exploding when I hear that.

 

Whitney Lowe  

No, you’re saying this is after a treatment, or when is this

 

Tina Wang  

after

 

Whitney Lowe  

the experience? Oh, really. Yeah, interesting,

 

Tina Wang  

yeah. And so the the biggest one is fevers and that that will be your your biggest clue is when the client says, Oh, I had fevers, and maybe the temperature goes up, but it may not, but it’s in the body. It’s subjective. They feel it. That’s a huge clue that this might be someone with pathologic hypermobility that you’re working with,

 

Whitney Lowe  

and so this is just because the autonomic nervous system is just kind of getting stirred up, so to speak. Is that kind of what’s doing this?

 

Tina Wang  

Yes, yes. And I think there’s what I see in this population, is there’s a much higher sensitivity to interoception and exteroception, so these nerves are very sensitive. And if you’re going to bombard them, and you’re going to come in, I train with osteopaths, so if you come in with your hubris, and I’m going to change this tissue and I’m going to heal you, I’m going to fix you, I will tell you personally, when someone lays hands on me and they come into the room with that I my body is screaming, I’m about to run out that door. And I always joke that I like novice practitioners, because novice practitioners come in like, I don’t know, and I love I love that because my nervous system senses safety. My nervous system senses this is not going to be a person who’s going to hash at my tissue and and tame it, because my tissue is not tameable.

 

Whitney Lowe  

Yeah. One thing real quick. You referenced a couple terms there til, and I did talk about this in some previous episodes, but in case people missed that, can you just briefly go over what you mentioned about interoception and external reception exteroception for people to recognize what that means in terms of what someone might express in a session environment,

 

Tina Wang  

right? So I always love this. I say, Oh, you have EDS when I’m down at the foot, or I’m injecting to a foot, and they say, Oh, I feel that in my right shoulder. Well, oh, man, I should check you for EDS. So that’s the interoception, to be able to feel what’s happening within that body. And then the exteroception is that sensory processing stuff, the light coming in, the colors that those papers are not perfectly organized. And so we see a high rate of Ehlers Danlos in the ADHD population, in the autistic population. And then vice versa, we see a lot of ADHD and autism in the hyper mobile spectrum disorders, Ehlers, Danlos disorders. And a large part of the of the existence and experience of these people are this huge amount of interoception and exteroception. And we often like to miss label and type Autistics as not having empathy. Huge amounts of empathy. Of empathy is just we don’t actually understand why you’re having that emotion. So I can see, oh, you’re angry. I said something wrong. I have no idea why you’re angry, and then I’ll need some explanation.

 

Whitney Lowe  

Interesting. Yeah,

 

Til Luchau  

that’s a really helpful distinction, too. Yeah, I just, I just want to flag Ruth Werner, who actually, I told her that we were speaking. She writes a pathology column for massage and body work, etc. She actually had that question about dysautonomia and EDS, they seem to be co occurring. And she’s wondering about the mechanism, I think you just described, that you’re talking about the process of of development being a somatic one that includes both the quality of tissue qualities and the relational interactions and the nervous system regulation, all as an integrated whole, I’m thinking, I think that’s what you’re describing here for us,

 

Tina Wang  

right? And then in terms of tech, if we get a little bit more nitty gritty into like histopathology, fibroblasts have released neuropeptides that speak with surrounding nerves and the nerves and the valuable blast

release neuro peptides that speak with the immune cells in the area, macrophages, mass cells, and they’re all in cross talk in these areas surrounding vessels. And so now you get a systemic effect. And. And you can’t tease out one over the other,

 

Til Luchau  

hopefully a systemic, well, systemic effect that could go either way, it could be calming or it could be irritating, accelerating. But their hope is we find a way to do our hands on work that leverages those salutary systemic effects from the local occurrences that are probably happening. Okay, here’s another great question from Ruth. She said, this is just a quote from my little pointy headed perspective. She says, It seems like diagnoses of EDS are more common than they used to be. Is this because of more sensitive diagnostic tools, or something happening to us genetically? Or am I wrong? She says

 

Tina Wang  

all of the above, all of the above. So I would say first to tackle that question is EDS, society, we will meet, you know, every so often and re, re, assess how we’re categorizing patients. And then there’s a strong need for patient centric diagnoses. What is it that this patient needs? I’ll get into arguments with people then they don’t meet the diagnostic criteria, okay, but what does this person need? Because there’s a lot of gray area in diagnosis. I can make something fit into that box, or I can make it not fit in that box, depending on how I frame it. And so what is it that this person needs? Does this person need reassurance that, boy, this is not the source of my issue, or does this patient in front of me need this diagnosis so they can all begin to understand the world around them and move forward in their healing journey? So part of our discussions in the EDS echo is, how do we make our diagnoses and care patient centric? And so then you’ll see an increase. There’s also increase in awareness with advocacy. So me coming on here previously, in the past, I was not comfortable letting people publicly know that I have hypermobile or standalone because of all the stigma. So does that mean you can’t work? You need to call call off. What does that mean? And I didn’t feel that I was representative of the population, because my patients are quite ill and they have a lot of functional difficulties. And it wasn’t until knowing that I had comorbid autism, and how that or co occurring autism the preferred language now that I started to really see how that overshadowed and framed my experience of having Ehlers Danlos, you know, I I’ve moved into a different direction from Many of my patients, some of them come in like this too. I’m not interested in a diagnosis from a very young age, I had doctors telling me I was crazy, and I decided that I will just figure it out myself. And how is it relevant that I wake up in pain every day I wake up in pain every day I’m going to go work, and so I know that my experience is very different from many of the patients who come in needing a framework to understand their world. But once I had this knowledge of my autistic experience as a person with Ehlers, danlos living with co occurring autism, I started to realize that I had a very valid advocacy, um, point of view as well, that there are many people living like I do who may be lost in their understanding of the world, who cannot even begin to conceptualize what it is to deal with their chronic pain issues, if their relationships are so confusing. And so that was one of the impetus for me coming out and saying, Okay, I have this condition too, and people who have co occurring autism with hypermobile EDS have an actually larger burden of disease, meaning we have more of that dysautonomia. We have more of that immune dysfunction. We have tons of allergies. I can’t eat anything. Sometimes, if I look at that bread, my stomach starts hurting. And so that’s the impetus. Is that more and more of us are coming out, speaking up in the public forum. And then the last piece is the environmental piece. I think we live in a cesspool. We are destroying our

environment. The foods we eat are horrendous, and if we’re putting plastic particles into our environment and into our foods from a very young age. What does that do phenotypically, if you’re predisposed to this stuff? We were watching a news article segment, and my nine year old was disgusted. The nine year old knew to be disgusted by what we’re doing to our environment, and across the board, from my colleagues, we seem to all feel the same that it’s environmental,

 

Til Luchau  

it’s such there’s so much pain in the background, I think, for all of us, about what the state of the physical world and the environmental world that it’s hard to it’s hard to it’s hard to separate that out. And then there’s the direct medical developmental effects. And I just, I just want to take a second and thank you though, for sharing your journey and your story, and just added another level of my appreciation of your your work, your inquiry into both what works for you, but then also trying to understand the mechanisms in a way that we can all learn from that and influence what we’re doing with people with hypermobility issues, eds, but also other other clients as well. There’s a very human element to what you’re describing Absolutely.

 

Whitney Lowe  

I think you have such a unique perspective about that that lets people really recognize and see so much more looking at it from both the clinician and the experience or both, I think that’s a tremendous gift that you have given everybody. So thank you again. So much for that.

 

Tina Wang  

Yeah, I just want to thank you for the work you do and your this, this platform you have is advocacy, and it’s phenomenal.

 

Til Luchau  

Thank you for taking the time any any other thoughts you want to leave us with. Dr Wang, we’ll call it a day.

 

Tina Wang  

Just go slow when you meet your Ehlers. Danlos patient, go slow and form that connection. Because that connection is is just a lifeline for them,

 

Til Luchau  

is a key thought, and I loved what you said about the beginning therapist sometimes being more receptive to that.

 

Whitney Lowe  

Yeah, that’s interesting. Yeah, that’s

 

Til Luchau  

great.

 

Whitney Lowe  

All right, what

 

Til Luchau  

do you think, Whitney, can we close it up?

 

Whitney Lowe  

I think so. Yeah, that was a fascinating dive into this, and we may, hopefully, if that’s okay, call you back to explore some of these things in greater detail at some point later down the road as well, because it certainly has opened up a lot of questions and other things for me to think about along these lines.

 

Til Luchau  

I have a little mind map here with bubbles headed off in every direction, and more little avenues to explore. So thank you for that expansive process here. Yeah, we’re excited to welcome Jane as a new sponsor of the thinking practitioner. If you know us, you know we’re selective about who we partner with. We want sponsors whose values align with ours and who genuinely serve this community. Jane fits that bill. Their practice management platform built specifically for health and wellness practitioners, simple enough for solo practitioners, but powerful enough for clinics and groups. What really caught our attention is Jane’s reputation for customer service, real humans available by phone, email or chat, even on Saturdays. That kind of support is increasingly rare, but it says a lot about a company. If you’re looking to simplify the business side of your practice, check them out at a-t.tv/jane and Thinking Practitioner listeners can get a free first month by entering the code thinking one mo like thinking one month at checkout, thanks to all of our listeners and all of our sponsors. Stop by our sites for the video, show notes, transcript and extras. Whitney’s site is academy of clinical massage.com my site advanced dash trainings.com and we want to hear from you with your ideas or input about the show. Just email us at info@thethinkingpractitioner.com or look for us on social media or on YouTube. We would really appreciate it if you’d take a second and rate us there, wherever you see us on Spotify, Apple podcasts, YouTube, wherever, as it helps other people find the show. Take a minute and do that. And thanks, as always, for sharing the word and for telling a friend. 

 

Whitney Lowe  

Thank you again. Dr Wang, so much for being with us today. This was a delightful conversation,

 

Til Luchau  

great. And with Dr Wang, where can people find out more about you your work? What would you like to direct them towards?

 

Tina Wang  

Yeah, absolutely. So with the brain cell seminars, we are hosting hands on courses interdisciplinary, and people can find us there too. And I’m co hosting the courses with Claire Frank physio. And if you go to the website, which I’ll share with you after the podcast, they can make

 

Til Luchau  

sure that’s in the show notes, Yep,

Tina Wang  

yeah, they can take a look there.

 

Til Luchau  

Okay. Well, thanks again, thanks again, Whitney, thanks again Dr Wang,