The Thinking Practitioner Podcast:
Episode 79: Hypermobile Ehlers-Danlos, Fascia, and Pain (with Tina Wang)

Til Luchau:

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Whitney Lowe:

So check out their collection of eTextbooks 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?

Til Luchau:

Doing very well, Whitney, how about yourself?

Whitney Lowe:

I'm doing very well. We have a special guest joining us again today. Who is our guest today?

Til Luchau:

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 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 Fascial 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 fascial dysfunction to improve clinical understanding, diagnostics, and treatments of myofascial pain syndromes, Ehlers-Danlos syndromes, and hyper mobility spectrum disorders. Very interesting. You have a private practice, doesn't stop there. You have a private practice where you see people with HEDS, or the hyper-mobility version of Ehlers-Danlos syndrome, and you're the founder of the Brain Cell, a startup dedicated to evidence based, narrow fascial 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. 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. It's been, 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 my, 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. People with hyper mobility syndromes tend to be more flexible in their tissues, and yet they often have more pain. That is counterintuitive for a lot of people who are trained in a soft tissue approach that emphasizes relaxing or mobility, I think. Okay. So if they're relaxing or why do they hurt more? So I hope we get to that, but sorry, back to you, back to your own journey in your own interest there.

Tina Wang:

Yeah, that is one of the conundrums that led me 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. Passive tissue stiffness is not consistent with what I would see in someone who is very, very glidey mobile. Just to add to that, 30%, 25 to 30% of the population has generalized hyper mobility.

When you touch their tissue, feels great, feels normal, I wouldn't even think to go checking. 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." Under ultrasound examination, when it's not pathologic, when it's just a phenotypical 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:

It feels great to our hands as manual therapy practitioners. Yeah.

Tina Wang:

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:

I'm sorry, could I back up one step? Can we just for our audience say what EDS is or what-

Whitney Lowe:

Yeah, that's a good idea.

Til Luchau:

Should we start there and then let's dive into that question? How do you answer that question Dr. Wang?

Tina Wang:

So there are 13 different subtypes based on the 2017 nosological classification. So that's how we classify what type of connective tissue Ehlers-Danlos you have. Of those 12, we have known genetic variants and they're really rare, and they run in families. And we do genetic testing. On physical examination, there are very, very clear signs that show up. Some of those are very, very worrisome. That's what we're really, as clinicians thinking about when we're screening these patients, we don't want to miss some of these subtypes.

Then the 13th subtype, which is the overwhelmingly most common one, is the hypermobile type. That diagnosis is not based off of genetic testing, it's based off of clinical diagnosis. There are three parts to that diagnosis. The first part is, are you generally hyper mobile? So that's part A. Again, we had already said 30% of the population is generally hyper mobile without issues. So I've seen that occur where ... Can you imagine that that's 30% of the population? So if you're labeling 30% of the population with hyper mobile EDS, that's an issue.

Til Luchau:

That's huge. But what is the definition, in that case, of hypermobile, how are we describing that?

Tina Wang:

Yeah, there's a-

Til Luchau:

Subsymptomatic, you're saying?

Tina Wang:

Yeah, there's a Beighton score that we use. So there's a cutoff based on age and gender assigned at birth. So 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, how do you, determining this 30% or hypermobile, but asymptomatic?

Tina Wang:

Right. So that B part is what then is manifesting in the tissue. So systemic manifestations, what's the shape of the jaw? What are the the heart valves doing? How long is that arm? How long are those spindly fingers? You can't tell. So when I first started doing this, at first I wouldn't ... I never even thought that I had hypermobile type EDS. 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 hypermobile EDS, and one of them is the longer fingers, and there's some other ones as well.

Tina Wang:

Yeah, and long arms. So you wouldn't be able to tell, you just got to, you have to measure. I never thought I had long arms relative to my height.

Whitney Lowe:

Okay. So let me also backtrack for just a second. When we said, 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 hyper mobility. It is a very-

Whitney Lowe:

Okay, so we're just talking about a generalized hyper mobility at 30%.

Tina Wang:

Right.

Whitney Lowe:

That's what I was missing. Because I was going to ask, well, what was the population that just has hyper mobility that may not have the EDS presentation

Tina Wang:

Yeah, and-

Whitney Lowe:

30% is across the board. Okay, got it.

Tina Wang:

Yeah. A very small percent, and it looks like it's maybe about, it depends on who's estimating and which study, but it can be as few as 0.2% to as high as 4.5%. 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 they have," and well, there's a lot of variables to meet the criteria.

Til Luchau:

Shape or proportion is just one of them, you're saying.

Tina Wang:

Right, right. 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 not related to Ehlers-Danlos, if it's in a localized area. So then our diagnostic framework starts to widen based on if the tissue is way too stretchy. We check on the neck and on the wrist. Then 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:

Of the heel. The fat pad on the heel.

Tina Wang:

Right. So the last part of the diagnostic framework then is the most difficult. That one is the exclusionary diagnosis, and that's really looking at forms of neuromuscular conditions that can mimic or co-occur with hypermobile Ehlers-Danlos. That one is challenging. Part of my background is extensive neuromuscular training. So even though I'm not subspecialized in it, I've worked long enough in neuromuscular medicine, trained underneath neuromuscular medicine physicians.

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 there is something we're missing here and we need additional workup. That, I have a very low threshold for. So I'm not so much interested in, if you have hyper mobile EDS, great. But I am worried if we're going straight to that and we're missing some other diagnoses that needs extensive workup. That's where I'm really thinking of 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 as a physician. Now as a massage therapist, say, what would be important for them to know at this point? What would they be ... What were some red flags or things to begin to suspect this kind of condition?

Tina Wang:

Well, I have a twofold 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, specialists. And when they come from massage therapists, they're almost always like, yep, you have Ehlers-Danlos. What it is it's the tissue quality. It feels like, a non-scientific term, mush. It's this uniform, spongy mush. You feel like there's going to be liquid that comes out of them when you palpate.

That is almost always there. Not all the time. Some of my patients are very, very thin. 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 would be really one of ... When I receive 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, the mush and the lack of glide. I don't know if that's paradox to you, but that seems paradoxical to me. But no, I know exactly what you're talking about in terms of the feel of the tissue feel. But then you say also a lack of glide. What's that? How does that manifest?

Tina Wang:

Right. So this goes back to that question that Whitney was asking before we got into-

Til Luchau:

Let's get back to that.

Tina Wang:

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

So they're telling me that they feel stiff, that 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 hyper extend." I say, "Well, okay, then ..." You always wait around for someone else to do the study. It's like, well I'm, 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. Sure enough-

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. It was thicker in those with pain. So I was certain I 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 that it was actually 1.8 for Ehlers-Danlos. So quite a big difference significantly. 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. It seemed to be pretty uniform in the Ehlers-Danlos population, which I didn't expect to find that. I was pretty open. What are we going to find here?

In subjects with neck pain who were not hypermobile, there was a softening in the deep fascia relative to a increased thickening in the muscle. The 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, 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. That is 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 even send this email to Antonio telling him this is what I found?

Til Luchau:

This is what caught my ear in Montreal. You were coming up with non-intuitive findings around stiffness. You're finding 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, what are the tissue level differences in hyper mobility? Is that correct?

Tina Wang:

Yes, yes. 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 is 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:

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 can just picture or feel how that would be. You said that was a surprise to you?

Tina Wang:

I expected the densification or what that is defined as is an aggregate, a non-functional aggregation of the extracellular matrix content, including what Antonio Stecco studies, the hyaluronan. So these pathologic, nonfunctional aggregations then are stickier. So I thought, sure enough, the sticky glue should be stiff. Not necessarily, they're two different properties, gliding and actual stiffness. That was a real surprise to me. What I really learned is that we cannot separate muscle from deep fascia. We have to look at ... Then superficial fascia, what is that? How is that functioning as a unit? 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 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. Walk us through it.

Whitney Lowe:

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 trying to understand and grapple with some of the things. Both my mom and her brother had EDS at a pretty significant level. When we talked about the diagnostic criteria, we were told early on that this sometimes does skip generations. Is that necessarily true that does skip generations in terms of that genetic disposition? Or is that not what you have found currently?

Tina Wang:

It does. So it's autosomal dominant, so this is going to clarify. 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 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. So it has variable expression. 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. It's going to be more severe in one versus the other. 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 phenotypical, the manifesting of symptoms.

Til Luchau:

Oh, interesting.

Tina Wang:

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.

Whitney Lowe:

Well, there's a lot of things that I do notice. The skin quality, the hyper mobility, 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. But what didn't pop up was the extreme bruising and the connective tissue damaged so easily. So we got this safe stuff, if you can look at it that way. That's not some of the things that we saw with my mom and her brother frequently. But 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.

That kind of gets into what this other question that we were pondering. Til And I had been talking about this a good bit, that trying to grapple with this issue around densification and the myofascial pain. 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, is that because the densification because there is pain or is there densification, or pain because there's densification, et cetera? 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, and I still treat this way. So I will sequence the patient using the Stecco methodology, and then I inject into the three different fascial layers as described by the shoulder study. What they had done was so interesting. They took hypertonic saline, which is an irritant, and they injected into the superficial fascia, the deep fascia into the muscle. 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. It will also serve to manipulate the tissue, much like you would with the finger. But I'm going to do that with saline. I learned how to do these injections around nerves. We call those hydro dissections of nerves, of entrapped 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 fascial 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. That I learned from my friend, Kentaro Nishi, he likes to inject stem cells through itty bitty, tiny needles. It's for patient comfort. 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.

In this study I found that 75% of myofascial pain. So when I inject into that deep fascia, yes, in combination with other layers, 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. Then if we talk about only muscle, and this is very controversial statement. When we published this paper, it was extremely difficult. It was so controversial because of the trigger 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. You never want to see anything that comes out against what you're doing. Muscle was only involved alone, muscle alone, because in combination with these other two tissues, yes, 43% of the time 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.

Whitney Lowe:

If you're finding results from injecting those, what is the 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 there are glycosaminoglycans, of which hyaluronic is a type, that is causing some kind of mechanical dysfunction stickiness, then we're opening up that tissue. Just like you would do with your finger colliding of manipulation of tissue. Then the last part is really washing out any inflammatory mediators that are very, very, very likely present.

Even digging through the literature over the last 10 years, already the histologist were calling fibroblasts immune cells. They were primary sentinel immune cells. It's just so interesting that I was talking to one of my colleagues yesterday, why isn't it that, 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 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 were doing. Now I want to make sure we get the right reference to that study you were just describing. Is the study you just described with the reduction in pain, is that a published study? Is that something we can reference?

Tina Wang:

Yes. It's open access and I'll send you a link.

Til Luchau:

Awesome. We'll get that.

Tina Wang:

Yeah. That's-

Til Luchau:

That's fascinating.

Tina Wang:

Yeah.

Til Luchau:

Those numbers, sorry, 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? Then I do a pain pressure threshold. Is that the same or did 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. There are case reports, as well as anecdotally of patients who became destabilized and ended up having cranial cervical fusion. This is not to scare people. They're very rare. Very rare.

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. We've even had conversations about muscle relaxants in this group. Yes, there are horror stories, and they are few and far between. The important thing to know is that every Ehlers-Danlos patient is a N of one. You can't make sweeping judgements as a whole, like you do not do stretching, you do not do deep tissue.

No. That is your N of one. You move slowly, and that's 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. So in that study, I noticed that they all had a very certain type of patterning, a cervical dystonia, not severe. To your audience who doesn't know what that means, it's a patterning that happens into a neck, a twisting, and they're kind of locked there neurologically.

So there is a Botox protocol for cervical dystonia. 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. Low and behold, they all kind of lined up, the fascial line dysfunction with the dystonia protocol, how you would choose which muscles based on rotation. These few patients that I followed improved. The thickness of that sternocleidomastoid also decreased. Their pain-

Til Luchau:

With simply, the only intervention was the Botox injection. Is that right?

Tina Wang:

Right. Into muscle.

Til Luchau:

Very interesting. Into muscle. Yeah. So just my simple layman's understanding, the Botox essentially relaxes the muscle at a very deep, 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 causing that?

Tina Wang:

Yes. It's low dose. So I'm not using that full large dose, I'm just using a low dose so that we provide a more balance to the system. Then why does it keep recurring? Well, 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. I'd take a course to occupy my schedule, and it was one of the best courses I've ever taken. She's a pediatric physiotherapist, and she started talking about patternings that she's noticed in these children.

I started paying attention to some of these patternings in my patients. I started to realize, boy, I think Ehlers-Danlos is neurodevelopmental. They have very similar patterns to how they're firing the muscles. 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 are some of the highlights of a maintenance program, or especially as it relates to manual therapy? Does manual therapy belong in that picture? And if so, how?

Tina Wang:

Absolutely. One of the things that has come to the forefront, especially with the leaders in the that EDS society, is the developmental neurodivergence. There is a high rate of that in Ehlers-Danlos. After that pediatric course, I started paying attention, because neurodevelopmental issues and neurodivergence, they're classified is the same thing. I started paying attention. What I find, and this is just a supposition, which I'm going to, I'm in the process of writing a book, because you can't publish this kind of stuff. It can't not be proven.

One of the things that I feel strongly about is that this starts first as a neurodivergence. 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. Maybe we know that neurodivergence has strong inheritance, so maybe our parents are pretty traumatized and they can't provide for us skill sets and tools. Now we're set free in this world. From a very early age, we're making adaptations and that nervous system is going crazy.

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. If we don't have that, we don't even have a starting point to help patients.

Til Luchau:

Wonderful. The touch being a primary channel of experience in that realm, that process ... What a fascinating idea, that process of becoming of development, being a process of becoming neurotypical, you could say, or developing out of a state that's more divergent, and 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. I can speak as my own experience as a neurodivergent person with autism, human connection is craved, but so difficult to access. 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 our hands say when we're doing ...

Whitney Lowe:

Yeah.

Til Luchau:

We're 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. 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. 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, what kinds of things should they be thinking about there or being careful of in their treatment with them?

Tina Wang:

Right. Great question. I've been there. I've been there on the erring 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. They didn't wake up for 12 hours. That's always a great phone call. My heart is exploding when I hear that.

Whitney Lowe:

Now you're saying this is after a treatment or when is this ...

Tina Wang:

After a treatment.

Whitney Lowe:

Oh, really?

Tina Wang:

Yeah.

Whitney Lowe:

Interesting.

Tina Wang:

Yeah. So the biggest one is fevers. That will be your biggest clue is when the client says, "Oh, I had fevers." 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 hyper mobility that you're working with.

Whitney Lowe:

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.

Whitney Lowe:

Interesting.

Tina Wang:

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, my body is screaming. I'm about to run out that door. I always joke that I like novice practitioners because novice practitioners come in, like I don't know. I love, I love that because my nervous system senses safety. My nervous system senses this is not going to be a person who is going to hash at my tissue and tame it, because my tissue is not tamable.

Whitney Lowe:

Yeah-

Til Luchau:

How about the fact-

Whitney Lowe:

You referenced that. Tell me-

Til Luchau:

Go ahead.

Whitney Lowe:

One more 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 exteroception for people to recognize what that means in terms of what someone might express in a session environment?

Tina Wang:

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." I go, "Oh man, I should check you for EDS." So that's the interoception, to be able to feel what's happening within that body. Then the exteroception is that sensory processing stuff, the light coming in, the colors, that those papers are not perfectly organized.

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 hypermobile spectrum disorders, Ehlers-Danlos disorders. A Large part of the existence and experience of these people are this huge amount of interoception and exteroception. We often like to mislabel and type autistics as not having empathy. It's huge amounts of empathy. It's 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.

Til Luchau:

Interesting. Yeah, that's a really helpful distinction too. Yeah. I just want to flag Ruth Werner, who actually, I told her that we were speaking, she writes the pathology column for Massage and Body Work, et cetera. She actually had that question about dysautonomia and EDS. They seemed to be co-occurring. She's wondering about the mechanism. I think you just described that, you're talking about the process of development being a somatic one that includes both the tissue qualities, and the relational interactions, and the nervous system regulation all as an integrated whole. So I think that's what you're describing here for us.

Tina Wang:

Right, 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 fibroblasts release neuropeptides that speak with the immune cells in the area, macrophages, mass cells. They're all in crosstalk in these areas surrounding vessels. So now you get a systemic effect and you can't tease out one over the other.

Til Luchau:

Hopefully a systemic ... Well, a systemic effect that could go either way. It could be calming or it could be irritating, accelerating. But the 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 every so often and reassess how we're categorizing patients. Then there's a strong need for patient-centric diagnoses. What is it that this patient needs? I'll get into arguments with people. 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. 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 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? 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 Ehlers-Danlos because of all the stigma. So does that mean you can't work? You're going to call off? what does that mean?

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. 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. 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'll just figure it out myself. 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. 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 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.

So that was one of the impetus for me coming out and saying, "Okay, I have this condition, too. 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. So that's the impetus is that more and more of us are coming out, speaking up in the public forum.

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. 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. Across the board from my colleagues, we seem to all feel the same, that it's environmental.

Til Luchau:

There's so much pain in the background, I think, for all of us about the state of the physical world and the environmental world, that it's hard to separate that out. Then there's the direct medical developmental effects. I just want to take a second, and thank you, though, for sharing your journey and your story and just, it's added another level of my appreciation of 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 hyper mobility issues, EDS, but also other clients as well. There's a very human element to what you're describing.

Whitney Lowe:

Absolutely. 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 experiencer, 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 this platform you have is advocacy, and it's phenomenal.

Til Luchau:

Thank you for taking the time. Any other thoughts you want to leave us with Dr. Wang? 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 just a lifeline for them.

Til Luchau:

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

Whitney Lowe:

Yeah, that's interesting.

Til Luchau:

Yeah. That's great. All right. What do you think, Whitney? Should we close it up?

Whitney Lowe:

I think so. Yeah. That was a fascinating dive into this. 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.

Whitney Lowe:

Yeah.

Til Luchau:

Okay. Our closing sponsor today, Handspring Publishing. When I was looking for a publisher for a book that I wanted to write, I was fortunate enough to have ended up with two offers. One from a large international media conglomerate and the other from Handspring, which at that time was just a small publisher in Scotland, run by four people with a love of great books and our field.

To this day, I'm glad I choose to go with Handspring as not only did they help me make the books I wanted to share with you, the Advanced Myofascial Technique series, but their catalog has emerged as one of the leading collections of professional level books written especially for body workers, movement teachers, and all professionals who use movement or touch to help patients achieve wellness.

Whitney Lowe:

Handspring was recently joined with Jessica Kingsley, Publisher's Integrative Health Singing Dragon Imprint, where their amazing impact does continue. So head on over to their website at handspringpublishing.com to check out their list of titles and be sure to use the code TTP at checkout for a discount. Thank again, Handspring, for supporting the podcast. We do thank all of our sponsors. You can stop by our site for show notes, transcripts, any other kind of extras over there. You can find that on my site at academyofclinical massage.com. Til, where can people find that on yours?

Til Luchau:

advanced-trainings.com. If there are questions or things you want to hear us talk about, email us at info@thethinkingpractitioner. Look for us on social media under our names. My name remains Til Luchau. Whitney, yours?

Whitney Lowe:

You can find me over there on my name as well, through Whitney Lowe. You can, if you will, rate us on Apple Podcasts as it does help other people find the show. That's very helpful for us. You can, of course, hear us on Spotify, Stitch, or Google podcast, or wherever else you happen to listen. So please do share the word and tell friends. Thank you again, Dr. Wang, so much for being with us today. This was a delightful conversation.

Til Luchau:

Great. Dr. Wang, where could 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. 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-

Til Luchau:

We'll make sure that's in those show notes. Yeah.

Tina Wang:

Yeah. They can take a look there.

Til Luchau:

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

Whitney Lowe:

Yeah. All right.