Can Pain Education Lessen Chronic Pain with Adriaan Louw, DPT? (Ep 156)

Transcripts are auto-generated and may contain errors

Dr. Linda Bluestein: [00:00:00] Before we begin, I want to acknowledge some very important feedback that we received about the original recording of this podcast. I also want to be crystal clear that pain is a deeply personal and emotional topic. Many of you have been misunderstood or dismissed and misdiagnosed. I especially want to recognize parents, particularly moms who've been unfairly accused of over medicalizing their child's symptoms, or even munchausen's by proxy.

As someone with Hypermobile EDS, myself and as a mother, that was never, ever the intent of this conversation. In this episode, we talk about no CPL pain, a type of pain that is linked to changes in the nervous system and how it can play a role for people with Hypermobile EDS and HSD. My hope is to share information, not judgment.

Please listen with curiosity and self-compassion, take what is helpful for you and leave the rest. Enjoy the episode. 

Dr. Adriaan Louw: So a lot of the things associated with the pain experience, we can actually turn, including self-reported pain, function, disability, all [00:01:00] those things. Um, so those, I strongly believe we can do it.

But the interesting thing is it doesn't take you from, let's just use silly numbers again today from a 10 to a zero, if I had to do that, bill Gates, thighs, my shoes for the rest of my life, right? It's as simple.

Dr. Linda Bluestein: Welcome back every bendy body to the Bendy Bodies podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility md. I'm so excited to bring this guest to you today, Dr. Adrian Louw. When I was in so much pain and really, really struggling to get my life back, it was people like Dr. Louw who really turned the tide.

For me, learning about pain, neuroscience really helped me to understand why I was hurting so much and what I could do to help myself feel better. Dr. Louw is a world renowned physical therapist and pain scientist whose groundbreaking [00:02:00] work in pain, neuroscience education has transformed how clinicians understand and treat chronic pain.

He's authored over 120 peer reviewed papers and books like, why do I Hurt? Helping Countless patients and Providers Rethink Pain from the inside out? If you or someone you care for lives with chronic pain, this is definitely an episode you're not going to want to miss. I'm so excited about this conversation because understanding pain science has tremendous potential to reduce suffering and impact anyone affected by persistent pain.

As always, this information is for educational purposes only and is not a substitute for personalized medical advice. As a reminder, be sure to sign up also for the substack newsletter@hypermobilitymd.substack.com. Stick around until the very end so you don't miss any of our special hypermobility hacks.

Let's get started.

Well, I am so excited to be here with Dr. Adrian Louw, and I've been wanting to talk to you for such a long time, so thank you so much for coming on the Bendy Bodies [00:03:00] podcast. 

Dr. Adriaan Louw: Well, thanks for having me. I appreciate being here. 

Dr. Linda Bluestein: Yes, absolutely. And you know, this podcast focuses on people who have, uh, connective tissue disorders like the Ehlers-Danlos Syndrome and people who have co-occurring conditions like dysautonomia.

Of course one of those is POTS and mast cell activation syndrome, but we know that a lot of these people are impacted by persistent pain and definitely no CPL pain. And we're gonna get into some of the more specifics with hypermobility in just a little bit. Um, and we know that the listeners include both patients and healthcare professionals.

But let's start out talking about pain science because you are absolutely one of the founding fathers of pain neuroscience education. And I just wanna find out first, like why did you get so involved in studying this in the first place, and how has your thinking evolved over the past decade or so since you published articles like the clinical application of teaching people about pain?

Dr. Adriaan Louw: That's a really good question. And uh, and, [00:04:00] um, you know, the easy answer is the, um, I got here because I failed. Um, so I think for healthcare providers today, it makes a lot of sense. I was not trained to treat more complicated patients, and I mean, no disrespect with that. I just, I just think it's good for our listeners to know that, you know, we get trained, we get trained a lot, but we don't know everything.

When we graduate, we know enough to. To get started. How's that? Yeah. And so, um, the, the joke of everything is when you have a funny accent and you have relatively okay successive patients, you get more complicated patients because people start saying, I don't know what to do with, you could see the guy with the funny accent.

And I, the easy answer in today's world is I became burned out. I just did not know what to do with these patients. I felt absolutely inadequate and it took me the other path that some very kind people in my life actually steered me in this direction and said, Hey, there's a cool stuff out there. You should go check it out.

And so I was probably at a good point in my life, uh, professionally in a sense of saying, I need help. And so I started reading and reading and then, um, you know, some of the [00:05:00] smartest pain people in the world, David Butler, Robert Mosley, took me under their wing. I started working with them very, very closely, started teaching with them.

And that just started driving. And, and as you know, as you get into this, you get more questions. Yeah. So you answer one question and then you have five more questions. And so it just started this incredible process for me to learn more about a human being's pain experience. As far as the last 10 years go, um, you know, that's a really, really good question because I have a hundred things going in different ways that I can take in any direction.

But I think, um, we are just becoming more and more. Interested and aware of how complex a human being's pain experience is. Mm-hmm. They're all different. They're unique, they're a hundred percent real. And trying to match treatments to every individual that we see on a daily basis, um, yeah, that's, that's probably where I'm at professionally.

I'm just trying to just get a handle on this thing because like you said, once the minute you get an answer for something, you get 10 more questions. You're like, oh, I still don't know. So, um, I'm not sure if that answers you, [00:06:00] but 

Dr. Linda Bluestein: Yeah. Well, it does make me feel better that it's not just me, because I feel like every time I learn one thing, it raises so many more questions and I'm like, oh my gosh.

I feel like I used to think that I knew a lot and now I feel like I'm actually like. Knowing less over time, almost in some ways. But I think we get more and more curious about, about things, and we understand that things are so incredibly complicated. Like you said, the pain experience. And, and you've often said that pain is an output of the brain, not an input.

And of course, so many of us think of it as as an input, you know, only, um, how do you help patients actually experience that concept, uh, rather than just understanding it intellectually, because we know that, you know, pain involves every aspect of a person's life. And so how do you actually accomplish that?

Dr. Adriaan Louw: Um, you know, for the last three hundred and fifty, three hundred seventy years, we've always taught pain as an input. Mm-hmm. Um, you have an injury, you sprain your ankle. I'll use the most basic simple thing. You sprain your [00:07:00] ankle and we were taught that pain messages come in and we experience pain. The advances in neuroscience tells us it is extra, kind of the opposite.

We get information coming in, but the brain plays a big role. The important part is the way we transfer this to patients is through stories, metaphors, examples. You know, if I sit to someone and I tell 'em just the plain, simple biology behind it, I think most of us will get a migraine because it's so complicated.

But we've taken these incredible concepts of pain and how they work. Put 'em in a story and I will sit with a patient and explain to them or teach 'em the story, but embedded in the story, there is information where they can actually get this realization. So a great example would be, um, where I sit with the patients, you know, we're just having a conversation, we're in the clinic, and I, I'm getting the sense that they want to learn more.

I ask them, Hey, how much have you been taught about your pain? Well, not that much is it? I mean, I'm sure you have a lot of questions. I may ask somebody the question, you know, if you sprain your ankle, would it hurt? And they would say, well, yeah, of course that, that's common sense. We all know it, right? [00:08:00] But what would happen if you crossed the busy street and you sprain your ankle in that split second?

When you sprain your ankle is at the quarter of your eye, you see a bus coming straight for you? Does it hurt? And again, that's when you see those gears turn right, Uhhuh, and then patient will. Well, no. I said, well, why not? Well, there's a bus coming. I said, exactly. So our brain has to make a decision. Do I produce pain and we grab the ankle, which puts your life at risk, or do you just run across the street on a sprained ankle?

And, and I know this sounds silly, but it's this incredible thing to watch somebody conceptualize. I've had so many times patients turn to me and say, so what you're telling me is pain is what I think. And said, you are actually correct. It's more complicated. But yes, our brain plays a major role. And so in that brief interaction of just a conversation of a story, they go, wow.

So that's interesting. And then we have further conversations, deeper conversations, um, about how pain works. 

Dr. Linda Bluestein: I love that explanation because it's, it. I, I, you know, [00:09:00] here are all kinds of metaphors and you use a lot in various different books, which I, which I have to hold up my two copies of, of this is one of my favorites.

Of course, you have lots of of great ones, but that one is, is really great. Why do I hurt? We'll, of course have links to all kinds of, uh, things that you've written and articles and, and books and things like that. But that's, I think that's such a, a simple example in a way that people can really understand, right?

The bus is coming and you better get out of the way, sprained ankle or not. So, so, so I like that one. What about healthcare professionals? What do you think are some of the common misconceptions that healthcare professionals still have about pain, and how do you think Mm, they can actually unlearn those concepts?

Dr. Adriaan Louw: I mean, this is pretty simple. Um, we are so biomedically trained. Mm-hmm. Um, we have shifted the pendulum so heavy in, in the traditional medical world, we've taught you that bad tissues means you're hurt. And if you hurt, you must have bad tissues. We connected those two together. Uh, we now know, and it's important for [00:10:00] all healthcare providers and our patients to know that, that there are people today with very healthy tissues that hurt really bad and they're in a very bad spot today.

But there are also people with kind of yucky tissues. And life is amazing. We have, you know, we, for too long, we've shifted the pendulum. All of us know today that yes, if you sprain your ankle, very likely you're gonna get some pain. If you have rheumatoid arthritis in a joint, you're probably gonna have some pain experience.

Yes. But the pendulum is shifted so heavily and if I had one wish, it would probably be to get healthcare providers to understand a human pain experience is more complicated than just the health of your tissues. It plays a major role. Yes, yes, yes. We're very good at that. But, um, it goes way more into that.

Um, which brings us to the. You know, bio-psychosocial model where what your thinking drives your pain. And it's, by the way, going back to the ankle sprain story doesn't mean it's in your head. I think that's one of the biggest misnomers. Yeah. You'll tell a patient and you'll say, oh, oh, I know where this guy's going.

He say in my head, which assumes it's not true. Um, you know, we've done a lot of brain scan studies or [00:11:00] whatever, um, I'll just be straight up. I've, we've never scanned fake pain. All pain is real. Mm-hmm. Um, but your brain must be part of it. And so, um, my. Like my message to healthcare providers that psychologically we can drive pain, which is fear, catastrophization, or, um, you know, depression.

Those things are very real. They're very aware of it, but they all, they're as important as the healthy health of your tissues. Um, by the way, your social environment, what's going on at work? What's going on with your family? So pain is more complex than just tissues. And, and, sorry, you know, I'm a physical therapist.

I'm was trained in therapy and so we're very stuck in the tissues and that's kind of where I'm at. But it doesn't matter if I speak to orthopedic residents or if I speak to any medical providers. Uh, we, we go heavy in that direction. And I wish we could just pull that just back a little bit more and understand people are more complex when it comes to pain.

Dr. Linda Bluestein: And I find with the biopsychosocial model, I think. I'm, I'm glad you brought that up right away, because I feel like some people are in the biologic part and some people are [00:12:00] in the psychologic part, but it's all of that, right? It's all of those factors, uh, put together that, that causes the, the pain experience.

And I've literally had family members ask me, is this person's pain real? And I've said the exact same thing that you just said. All pain is real. I've also had family members say to me, well, is that the placebo response? Um, and therefore that person's pain wasn't real. So it's, it's really, it's really difficult.

And for people who are suffering with pain, validation is something that's so important. So. Balancing that validation, but at the same time saying, look, this is something. Once you recognize that the brain is so important, that actually also gives you like another lever to pull or another thing that you can actually use to impact your pain.

And we know pain and suffering are not the same thing. So I think in particular, that can help decrease suffering. 

Dr. Adriaan Louw: Oh, absolutely. I, you know, I, I, the part that I find fascinating is why we have such a stigma when it comes to the brain, [00:13:00] and I know what it is. I mean, it comes back to old models that we were always talking.

It's, if it's new tissues, it's real. If it's in your head, it's fake. And it comes from the old Cartesian doula as a model. But what I need patients to understand what we talk about, the brain, they need to almost think more about a professional Olympic athlete. The future of sports performance is the brain period done.

We know that, um, no matter what big sports medicine conference we present at, that is the future. Um, and, and why are we so afraid that the future is gonna get for athletes to perform better? It's gonna take on the brain. Well, the same thing happens in pain for you to get better. We we're pretty okay with the tissue stuff, but why don't we take this supercomputer, you know, 86 billion neurons?

That is so incredibly fascinating. It rewires itself every three weeks. And why don't we make this thing better and better and better so you actually perform better? But we have this stigma, which in my head, right? And, and so I blame us, the healthcare providers. I blame our old models. Um, but I want our patients to understand that, you know, exactly, your [00:14:00] pain is very real.

Doesn't make it any different, but don't be afraid to talk about the brain. Don't be afraid to learn about the brain. Um, because it's not the same as saying bullets in your head. It your brain is part of it. I mean, if I punched you in the arm right now, it's your brain that's gonna say, Adrian is a jerk.

You know, call the lawyer. He just punch me in the arm. But your brain must be part of the equation. And so mm-hmm. Instead of running away from the brain, run towards it. Because I think the future and all the ways we're looking at the brain's gonna play a major role in helping us understand and, and help people in, in pain.

Dr. Linda Bluestein: That's great. I, I have a couple follow-up questions to that. So, so, one, I'm thinking about something like dementia, which I, I, I feel like there's just stigma surrounding the brain, period, right? If you have dementia or, or depression or anxiety or other issues in your brain. I feel like there's more stigma often with that as compared to a lot of other conditions like cancer.

Um, but I also wanted to come back to the brain rewiring every three weeks. Tell me [00:15:00] more about that. 

Dr. Adriaan Louw: Yeah. I mean, you know, a, a common word that's thrown out there is neuroplasticity. Mm-hmm. Now, neuroplasticity occurs not only in the brain, the central nervous system, peripheral nervous system, but plasticity obviously means it changes.

It can, it can, it could rework itself. Um, about 50 years ago, we believe the brain you have today is a brain. You've got take it or leave. Mm-hmm. That's a, it's a health hand you were dealt with. But we now know that the brain there is a hundred and what, 25,000 miles of wiring in your brain that gets replaced every three weeks.

And you know, when I tell patients that, they sit, they go, wow, that's interesting. And they say, and I turn to 'em and say, you know what that means. This can change. You mean I can get better, Adrian? Absolutely. Plasticity. And we now have bioplastic, neuroplasticity, whatever plasticity gives us hope. It, it means it can change.

Mm-hmm. Yes. Our nervous system rewires itself in terms of, um, um, you know, nerve sensors. So ion channels, they change every 48 hours. They, their half life is about 48 hours. So all these things that [00:16:00] is associated with our pain experience, I need people to understand is not stuck. It's not the way it is, it can rewire itself.

Mm-hmm. And um, it happens in all ages. It happens a little slower for us. All these like me, but it happens. Um, we did a study recently in nursing homes where we trained older, older adults. These are people 80 years and above, and they got it. They got the pain stuff. By the way, they outscored the young.

Older adults. Adults. And so it's really interesting, uh, plasticity happens more in kids, um, than, than in older adults. But it happens all the time. And so the message I always give patients when I talk to 'em about this shift is that it happens. It's very real, and it means things can get different or better.

And that's where they, what happens is they lose hope. I mean, most patients I will like, that's it. Life's over bury me now. I, I'll never recover. I'm like, why? Well, I got this condition. Well, so what you can change, this system changes itself and we can rewire it by what we're doing. And I think that provides an enormous amount of hope [00:17:00] for us for the future.

Dr. Linda Bluestein: And didn't, we used to think that neuroplasticity only happened in children. So knowing that it happens in adults as well is, is so, is so huge and so important and, and people that have connective tissue disorders often have, you know, recurrent dislocations and subluxations and a lot of ongoing tissue trauma.

And so they might have a new injury before the first one even heals. So is there a way that people can tell how much of their pain is no CPL pain or pain, you know, in the nervous system versus tissue pain? I 

Dr. Adriaan Louw: think it's, they, it's a really good question, by the way. Um, I think for patients it's, it'll be tricky.

If I was a patient and I work with patients, obviously I don't, I don't think I've ever really had a patient when, when they have a pain experience sitting and going, now, was that neuroplastic or was that nociceptive, or was it, obviously, and I'm being silly about it, but for us as healthcare providers, for people that are listening, we've just learned to put pain in different buckets.

It tells us where we need to go [00:18:00] look for them based on how they present. It drives the healthcare provider's thought process in terms of examination, including how, how vigorous we are, how many tests we do, the results, et cetera, and the treatment. But for patients, you know, if we went to patients that ask 'em what's pain?

They'll say, I don't know, it just hurts. Hurt is hurt. And so, um, you know, I think what we need to probably just break down more, but with patients is the idea that what pains do I need immediate attention for, right? Because I treat patients with fibromyalgia, with whatever the condition is. Say, well, Adrian, I get pain every day.

Well, you need to know that's okay. And we can talk about that. But what happens when you break your leg? That's a different pain that we need to go to the emergency room right now. So it's more about the pains that you need immediate care for versus pains that we need to find a way to work through, cope with the strategies a therapist taught you.

That is, I think, probably where we're gonna have a little more tricky things. So we teach people about acute pains, pains that don't go away, pains don't subside, will quickly. There's warning signs and those are the things we say. Let, let's [00:19:00] pick up that phone and make a phone call, or let's go to the emergency room or urgent, urgent care and go get it checked out.

Um, because if you live with. Pain conditions all the time, your pain will go up, will go down, you'll have a good day, you'll have a bad day. Mm-hmm. And they'll oscillate, whatever. And so teaching, coaching people that, that is how a lot of people in pain work. Some days they were fantastic, like this was the best day ever had in weeks.

Other days like that, today's kind of sucky, right? That's okay. And we could work through that. But when you do hurt yourself, you need to know, Hey, this is different. I need to go get some help. So that is probably where I'm sitting more as opposed to. Trying to break it for them in categories. I find it fascinating, but I don't think I've, I've had patients say that yet.

Dr. Linda Bluestein: Yeah, no, I think, I think that's a good way to, to think about it. And what I often, I don't know if you probably don't know my own personal story, but I had severe, severe pain back when I was, uh, I fell off a mountain bike in 2009 and tore a bunch of things in my knee, and that kind of began like a cascade of things.

And I have a hypermobile EDS diagnosis myself. And so that's [00:20:00] kind of how I ended up leaving my or anesthesia practice and now, now doing this. And back in 2009 to 2015 or so I said that, or no, more like 2016, I had pain with like all capital letters, like big, big pain. Like I and I talked about it all the time and, um, and it, you know, it, I think I heard you on a different podcast talking about high impact chronic pain, right?

So, so that's what I had at that time, and now it's. It's like all lowercase letters. And of course, yeah, if I hurt something, like I feel it, but it's not, you know, impacting my quality of life like it was back then. And learning about things like catastrophization, I, I watched a lecture by, um, Dr. Dan Claw and learning about fibromyalgia and central sensitization really was so pivotal for me.

And so it was like, oh, okay, what's happening between my ears is making a big difference. I need to start working on that. And so that's really when [00:21:00] I started to actually Im improve. And I know a lot of patients with hypermobile EDS and HSD, they do get diagnosed with fibromyalgia oftentimes before their connective tissue diagnosis.

Um, for what you know about. Pain, neuroscience, education, um, you know, do you have other thoughts about the, do they have both, do they have fibromyalgia and, and these connective tissue disorders, or is the connective tissue disorder driving the central sensitization and no neoplastic pain? 

Dr. Adriaan Louw: Yeah. You're asking me the chicken and egg story today, isn't it?

Yeah. And the answer is yes and no. I mean, it, it, it's, I I, I mean, obviously the answer is I can see where patients may have been diagnosed with fibromyalgia and through the course of struggling, seeing different providers ultimately get an EDS disorder or whatever the next one is, or vice versa. It, you know, the, the reality is it probably depends where you start.

Um, we wrote a paper a little while back, treat the patient, not the label. And we showed that when patients show [00:22:00] with all these chronic conditions, um, and, and we start putting all of them over each other, they're so close. Right? Right. If it takes something like fibromyalgia, uh, what is chronic fatigue syndrome has been renamed now Myalgic, encephalomyelitis.

Um, and we take all these conditions and you put 'em over each other. They're so close. Mm-hmm. And so my personal physician is a, is actually a pa and he is a, he is a phenomenal gentleman. Um, and I always think if I went to him and, and gave him a list of my symptoms, he can put me in any one of a bunch of bucket.

And by the way, that bucket will then tell me if I'm gonna go see a rheumatologist, an endocrinologist, et cetera, et cetera, et cetera. Nothing wrong. Nobody's doing anything sinister or bad here. It just, it may take you down the path and it's more likely that a rheumatologist may have a certain set set of labels that may work for him or her better.

And that's fine because they're trying to help me. But then after a while, it's not working, but I go see the immunologist. And so what we find is our patients start getting labels attached, and that's okay. It's, it's a way for us to try and identify it, and there'll be a match [00:23:00] to treatments accordingly.

So I would argue that if you went one way, you may start with fibro and end up with EDS later or vice versa. Mm-hmm. And, and again, I want people to understand none of this is sinister. No, but nobody's doing anything bad. It's inherent nature of medicine, trying to wrap its mind around a very complex, um, human pain experience that's showing up in their office.

Dr. Linda Bluestein: And I'm glad you brought up about labels because I made a comment about labels recently that some people really took offense to. And it's so interesting because, and, and then other people didn't take offense to it at all. Yeah. And I had a number of different patients in my office over this past weekend, and I really noticed, like for some people, they don't care about the labels at all.

They're like, I, I don't nec, I don't necessarily want that diagnosis on my record. I don't, I don't need it. They don't feel like they need it for validation. They don't need it for Yeah. You know, res getting resources or accommodations or whatever. But then for other people, they really do want it for a variety of those.

Um, yeah. You know, different reasons. You 

Dr. Adriaan Louw: know, the, the, the important [00:24:00] part is I, I always teach our, our residents, you know, um, I, this is gonna sound really bad and probably will not be invited back, but I always, I always, um, teach my residents. Whatever the patient calls it is what I'm gonna call it. If you call in and say, I had like you to help me with my fibromyalgia, and they say, well, tell me about your fibromyalgia.

It doesn't matter in the big scheme. Um, and if I was a patient and after struggling for years, going from doctor to doctor to therapist, and finally somebody could say that this is what's wrong. By the way, EDS is probably what the tip of the spear because, you know, this is a very poorly understood condition where finally somebody gets validated.

This is what's wrong. Um, I'm not gonna take that away from you. That's your diagnosis. Now for me as a clinician, um, when you show up with the label that brings into my office, um, underneath it, there is, there's hurt, there's suffering, there is problems of seed, there's problems with goals, there's, there's loss of self.

I mean, the list goes on. So I'm not minimizing that. I'm not [00:25:00] saying that your label isn't right or it's not, it's not correct. It's just, this fits where you are today. And so you tell me what you call it, if you wanna call it whatever you call it. And it, and that's good because then we can identify it and say, well, it's, treat it accordingly.

But, um, there's no need to remove a label from somebody or to try and take it away or to slap a label on somebody. We're still just too human beings meeting each other in the same space. Mm-hmm. I happen to be a healthcare provider. You happen to be somebody that walked in my office and said, help me. And, and, and in that common ground, I'll help you regardless of where the label sits.

Um, but I, that's what frustrates me sometimes is people will try to spin the whole sessions, try and get rid of the label. It's like, I don't care. It's not, it doesn't change anything. You hurt, you cannot sleep, you cannot pick up your grandchild. You, you, you're very nervous about a trip coming up. How do we get you past that point with or without the label?

Partly if it makes sense, so, mm-hmm. I know. And, and you're gonna get some bad emails from this presentation. 'cause again, it is, it, it, it truly is people, it. Are validated and this is my label [00:26:00] and that's awesome. And other people, I don't want that label the stigma and that's okay. I'm not in the label game.

I'm in the, Hey, how can I help you today game, so. Mm-hmm. Um, but it is, you're right. It it, we have, yeah. My, my advice always for patients is to say, you know what? This is your pain. You own your pain, and you make sure you find somebody that validates you, treats you with respect and dignity. If they don't, you fail them.

But remember, it's a two-edged sword. 'cause on the one side, if you own your pain, which means you make the best decisions for you, but on the flip side, you need to help yourself and it's your pain. I don't own your pain. You do. So you're gonna have to work at this. And so it's kind of that double-edged process.

But, um, yeah, I, it's, I can only fathom what they have to deal with. I mean, again, uh, you know, Linda, I, I have, I don't have EDS. Um, I don't have fibromyalgia. I've had my fair of back pain as a therapist, but, um, I cannot fathom what these poor people go through. I've seen tens of thousands of them. Mm-hmm. And I've never cried as much as I have in the last 10 years because I feel so bad for people.

But. [00:27:00] I have to make sure people understand. I do not have EDS, I do not have fibromyalgia, so I can only imagine what you're going through. Uh, but it, I, yeah, OI cannot, I can only fathom. 

Dr. Linda Bluestein: Yeah. And I, I'm so glad that you brought up about, about owning your pain and the validation piece because, and I've done this, I've gaslit myself, a lot of people with EDS do gaslight themselves.

So when my doctors said to me, you know, well, there's no reason you should be having pain. I took that as fact and cried and sobbed and went into a like deep, dark hole. And I have patients that come in who have had these terrible experiences with other healthcare professionals where they have been completely disbelieved and not validated.

And I wish people would realize that you don't need someone else to validate your pain because no one else can, can feel it. And sometimes when I've told people. And, and it might not even be that they have, um, EDS, I remember one patient [00:28:00] specifically who was in her like late sixties, and she didn't have EDS.

She had family members that did, but she didn't, but she had lots of arthritic changes and lots of things going on in her body. And when I told her, you have lots of reasons to have pain, she just like exhaled. And she started to cry because she was like, everyone has made me feel like I shouldn't be in pain.

And just simply saying that lowered her pain. So I feel like this, getting back to the chicken and egg thing, it's, it's, uh, it's so, so challenging because people like want the physical therapist, the doctor, whoever to validate their pain. But that's not how it works. 

Dr. Adriaan Louw: No, unfortunately not. I, and then we, I mean, as a member of the healthcare profession, I think we could do way better.

Um, but I, you know, I work with healthcare providers. That's my job to train them. And I also understand they feel threatened because if you don't know what you don't know, then you're suddenly on the defense. Um, and you asked me earlier on, you know, [00:29:00] what's the message to the healthcare providers? We just need to learn and be humble enough to say, I don't know.

Mm-hmm. I tell my residents every day, if a patient comes with a complex case, just number one, listen, number two, you know, giving respect, dignity, and, and compassion. And it's okay to say, I don't know, but. I'll go find out. Mm-hmm. And so learn all the time. Right. But, um, oh man. It is, it is just, it is, this is complicated.

Pain is complex. Um, people that hurt, they truly hurt. They hurt really bad. And I think we can do better. We can do way better in healthcare with this. We, I don't think we're doing a great job. Um, you know, uh, and I, there's a really cool little book that I read recently, you know, slow Medicine, fast Medicine.

I think it's, I forgot the exact name, but I think it's fast Medicine, where we are very good in America treating fast medicine. You break your leg, we take your care of you. We surgery today, we fix it. Um, we have a heart attack. We're very good at that. But the slow stuff, the diabetes, the hypertension, the chronic pain stuff, we are just not doing so hard at that.

And so I wish we could do a little bit better with that because it, [00:30:00] that, that it's, we need a lot of that more so, yeah. 

Dr. Linda Bluestein: Yeah. And we apply the fast medicine principles to these slow medicine. Yeah. We're still giving people 10 minute Yes. Visits, when really they need, they need more time than that. And. When it comes to you teaching other physical therapists and other healthcare professionals about teaching their patients pain, neuroscience education, what specific things do you tell them in terms of how they should present this information in a way that doesn't feel dismissive?

Dr. Adriaan Louw: Oh, well, that, that's a really good question. I, I think the first thing is we always teach 'em to ask permission. I do not have the right to talk to you about pain unless you let me. So, you know, when a patient comes into a more complex patient and I examine them, get to know them, I will often just turn to 'em and say, you know, Hey Sally, has anybody ever explained to you really why you hurt or why your pain is spreading?

Or, you know, when it's cold, you feel your knee more than, but it's not cold. And, and the cool thing right now is most people say, nobody's ever explained that. And then, would you mind if I spend a few minutes and explain that to you [00:31:00] before I do my therapy, before I do the stretches or the exercise? So now I've told her I'm gonna do therapy because I'm a physical therapist.

What I'm gonna do, whatever you, you do as a provider that they expect, but then I'll a sudden and explain to 'em, and again, all we do is we plant a little seed. I teach her about pain. Hopefully I wrap it in a little bit of compassion, empathy, and respect. And then she will process, then we go do her exercises.

And then hopefully as she goes home, we give a little bit of thinking, homework, those kind of things too. Mm-hmm. And next time she comes in, she asks another question. So we build this repertoire over time of deeper learning where she slowly develops. And I always tell patients, I wanna make you so smart about your pain, that you walk in Monday and fire me.

You walk in like, I got it. I don't think I need you anymore. And we're gonna have the biggest party in the world because you know what? That's really it. If I can empower you to go, I got it. I know what you do. Am I pain free? No. But I know what to do. And when it's a bad day, I do these seven things. When it's a good day, enjoy life.

And we find ways. And by the way, every now and then, we kind of go off the rails and I'll come back to Adrian and scene for a couple of visits and get me back on track again. [00:32:00] And there we go. And that's, there's a lot of people in this world that live very, very successful lives, even with these labels attached to them.

Mm-hmm. And, and you know, that's, I, it's one of the things I'll tell you guys, a few years ago, my residents made me mad. I dunno what they did. They, they really upset me in class, you know, something. So I gave them homework. And I told them, and that by the way, if you don't make your instructor mad because they give you homework.

And so I said, go make me a list of this, of some of the most successful people on the planet in spite of pain. And I mean we have like a 5, 6, 7 page document of, you know, Morgan Freeman has fibromyalgia, like Lady Gaga has fibromyalgia, and Billy Eilish has EDS. The list goes on. And it was such an aha moment from my residents.

They said, wow, here are people that are conditions we often talk about, well, we cannot cure it, we cannot fix it. But they live very successful lives. Exactly. Don't let this define you today in this world. There is somebody with EDS that's starting their PhD [00:33:00] today in this world. There is somebody with EDS starting a business and, and, and, and I know that sounds arrogant, et cetera, but that's my challenge for my patients is don't I, I know you have a diagnosis.

That's fair. We can help you through the process, but don't let it define you because you still have to have hopes and goals and dreams because there are people that do this, and I get it. We go through periods of time where we feel bad and we we're down about ourselves and what we've been experiencing.

But um, we can still live very successful lives and what we're doing, and that's regardless if you've got back pain, EDS, fibromyalgia, et cetera. And so that's typically the challenge. And by the way, I think I just completely went off. Though I, I, I don't even know what I'm talking about right now, so 

Dr. Linda Bluestein: No, not, no, not at all.

I, I love it when, when, uh, no, you, number one, you really didn't. But, but, but two, um, no, I, this is, this is fantastic. This is exactly what, what I wanted to talk about, so, no, this is great. We're gonna take a quick break and when we come back, one of the questions that I really wanna ask you about is, do you think that some people have more of a [00:34:00] pain switch than a pain dial?

So we are gonna take a quick break and we will be right back.

Thank you so much for listening to Bendy Bodies. We really appreciate your support. It really helps the podcast when you like, subscribe and comment on YouTube and follow rate and review on all audio platforms. This helps us reach so many more people and spread the information to everyone. Thank you so much again, and enjoy the rest of the episode.

Okay, so we're gonna get to the pain switch versus pain dial. Question in just a, in just a minute, but first I wanna ask about, you've already touched on this, but in case there's something that you wanna add. So many people with connective tissue disorders have experienced medical trauma invalidation, and they might be listening to this and thinking, okay, pain neuroscience sounds interesting.

I'm not sure how this is gonna help me, or is this going to hurt me? But they need to really re rebuild trust in their body and in the medical system. Do you think that pain neuroscience [00:35:00] can help with that? 

Dr. Adriaan Louw: Yeah, absolutely. Now I'm biased, right, right. Obviously. But, um, we, the good news is the research is overwhelming.

If we teach you about pain, your fear goes down and fear is a big part of any disorder. If you, you don't know what tomorrow holds, will I be able to get on this? This trip to my niece's wedding. When you, when you are fearfully, drives your pain experience, we have shown very easily how we can reduce fear.

Mm-hmm. Catastrophization, which is just a fancy term for you. See the wool is cup half empty, which means that's, it buys over, I don't know what I'm gonna do. We can turn that the other way around. And when that happens, by the way, the brain actually turns on a lot of its healthy chemicals and lin's endorphin serotonin, that, that actually eases a lot of our pain.

So a lot of the things associated with the pain experience, we can actually turn, including self-reported pain, function, disability, all those things. Um, so those, I strongly believe we can do it. But the interesting thing is it doesn't take you from. Let's just use silly numbers again today from a 10 to a zero.

Mm-hmm. If I could do that, bill Gates ties [00:36:00] my shoes for the rest of my life. Right? It's that simple. But I, but we can take the 10 and make it an eight, or an eight can become a six and a six can become a five. We have done three year long-term studies where we've done this and just show we can steady over time reduce a pain experience mm-hmm.

In people with chronic pain. In the meantime, here's the best part is when you start feeling better, you do more. Right? So you start doing more and doing more. And then you get to the coolest part in the world where you say, even though I hurt, I'm gonna take care of my kids even though I hurt. I'm gonna clean my house even though I hurt.

I'm going back to work Now we're getting to that. Despite the pain process doesn't mean you're pain free. It means I still hurt, but I have more good days and bad days. And when I do have a bad day, I know what to do about it. Those kind of things. But, um, it definitely helps because it reduces fear and catastrophization are the two of the biggest things we can see in all our research.

So, yeah. 

Dr. Linda Bluestein: And I often tell people that if we just can stop the, that spiral, that often happens with people that have connective tissue disorders, especially if we can just start getting that going the [00:37:00] other direction. Any little bit of improvement, success usually seems to build on, on success. So, um, yeah, and like you said, you go from the 10 to the eight average, 10 to the eight, to the six to, you know, just if you just keep plugging away 'cause it doesn't happen overnight.

Right. It's, this is a, something that it usually took you a while to get to this place where you're at. So it's gonna take you a while to get into a better place. 

Dr. Adriaan Louw: Yeah, absolutely. If we can find a way to take it from 10 to zero, I'd, I'd be making a lot of money. Yeah. Um, you would make a lot of money, and I'm sure we all want that tablet, but it doesn't work that way.

Adrian needs to lose some weight right now, and guess what? It's not gonna happen overnight. Yeah, you can take a pill, but long term it won't work. I have to spend time, effort, energy, workout, watch my sleep, watch my stress levels, et cetera. Anything like that would take time. And, and the same with pain. Um, we can reduce pain.

It can absolutely be done. It's been shown, but it doesn't go drastically. And number one and number two is then as we feel better, it's like when you have the flu. When you have the flu, you feel [00:38:00] absolutely horrible and you're on the couch and feel sorry for yourself. But as you start feeling a bit better, you do a little bit more, you feel a bit better, you do a bit more.

And that slowly shift and the what PE Pan Neuroscience Education really does, it makes you go, I'm, I'm gonna be okay and we can teach you how. Why are you hurt? You know why when it's cold, do I feel my knee more? Why, when I'm stressed, do I feel this? Why when I have a fight with my husband, do I have more pain?

Well, let's talk about emotions and pain. So the more you learn about pain, the less afraid you become. And so I've always said pain that's understood is not to be feared. Mm-hmm. So if you, if you have pain, you go, I got it. The guy at the funny accident explained it. It doesn't mean the end of the world. It means I do hurt, but I can take care of it.

That's, that reduces that stress level, which actually then makes you like, I can, I can take care of it and I can move on. That's the important part. But I'm sure somebody listening to right now goes, well, that sounds so easy. No, it's not. It is hard work. Mm-hmm. It's like anything else. But it can be done and has been done.

Yes. 

Dr. Linda Bluestein: And, and a lot of people who have these conditions. Uh, you already mentioned me. CFS very, very common and [00:39:00] with also with fibromyalgia, you have a lot of, you know, cognitive fatigue. You might have brain fog. A lot of people have neurodivergence. Do you have any suggestions for how to explain or how to adapt, uh, p and e for people who might struggle with long explanations?

They might have a DHD, or they struggle with abstract concepts. 

Dr. Adriaan Louw: Yeah. The, the cool thing about this though is p and e doesn't have to be long. Um, the, well, I think my favorite project one day when I'm in a nursing home and I sit there and think, what did I do in my life, um, is gonna be, we built a middle school program for, um, a p and e middle school program, but middle school kids are learning about pain.

And I, I mean, Linda, when I have a fifth grade little boy sitting with his nose, sticking his finger in his nose and he is scratching his rear end and he sits there and goes, I got it. Then, you know, I kind of jokingly, like everybody can guard it. Um, we just did a study in the military with veterans, with post-traumatic, uh, stress disorder and traumatic brain injuries, and all we do is we just slow them down.

We repeat the stories. When we give them [00:40:00] written stuff, we just make the font a little bit bigger. They get it. Older adults, I mentioned to you, so people can learn pain. We just did it in a study with sign language, with people. We've done it through interpreters. Mm. We've done it in Spanish, we've done it different languages, so I.

It's not complex. It is very simple and easy stuff. And if somebody does have a brain that's super busy, which is common in pain, it's just a process of just doing it again and again. So I would teach you in the clinic, but I'll give you something to go home and read and read it again and read it again.

So you can slowly build that knowledge. But it's not, I hope people don't think we're gonna sit down and give you the, the textbook of pain, which is this big. And so go read pain, right? Um, we just gonna, it's just gonna tell you a silly little story and you're gonna go, well, that's a cool story. But in a story, there's concepts that you go, oh, I got it.

Dr. Linda Bluestein: Mm-hmm. And so 

Dr. Adriaan Louw: they can get it. They absolutely can get it. 

Dr. Linda Bluestein: Mm-hmm. Okay. And if you could redesign PT education from scratch. 

Dr. Adriaan Louw: Yeah. From, 

Dr. Linda Bluestein: are there certain, I'm gonna give you a magic wand for a second. What would you remove, add or change to better prepare clinicians for managing [00:41:00] chronic pain? 

Dr. Adriaan Louw: Nice trail, and I'm not gonna get the academics that bad at me today.

The, the good news is they do call us. I mean, there's not a week that I'm not somewhere in this country teaching pain science to PT students or OT and, and others. Um, you know, the, the question always comes on the academic side is what do I take out? There are fundamental things we need to know. Do we need to have entry level clinicians be the top of the, the top of their game?

No. They just need to be proficient and safe. Right. Um, I just think my number one message is pain cannot be an. Pain is often the afterthought. So we learn about the knee and the joint and the ankle, whatever. So I was invited to a PT school recently, and that's exactly the, the faculty met with me and provided lunch and they said, if you could redesign, I said, now I'm biased.

But I would put pain first in the curriculum because it talks about human pain, human suffering, and if we start there, we're good. And then if you go into, let's just call it modalities or you go into neuro or peds, now you take pain and you, you pull it beautifully through pediatrics, [00:42:00] through neuro. So you start applying it throughout.

Because ultimately a patient that comes in, PA, pediatric, neuro, whatever, they have loss, they have fear, they have pain, they have disability. But that's what I would do because typically there's this one. Two hour lecture on pain on a Wednesday when the wind is from the south and it's a nice 53 degrees out.

It's, it's an afterthought. It happens in, in medicine. Uh, we just, uh, trained 132 medical residents in Pennsylvania where again, they just get a small lecture on pain and that's it. And by the way, it's not even mandatory. It's just kind of like, man, if you wanna come, you can come. So we gotta do better. And I'm not pointing at anybody, but I think in general we should do it.

But if I had a choice and you gave me a magic wand, thank you, I would do it early. Mm-hmm. Because it puts the other things into perspective a little bit better. Yeah. 

Dr. Linda Bluestein: Yeah. I really wish that would happen in medical education because I feel like we don't learn enough about, uh, in medical schools, there's not enough taught about pain.

And I was asked to give a couple lectures when I was on the, I still am on the faculty, I guess at the me at this medical school. [00:43:00] And I gave a couple of lectures. And I, I'm thinking to myself, I wonder how much other training besides what I'm teaching them that they've had about pain because it, it affects everything.

Dr. Adriaan Louw: Correct. And, and that's the point. It travels all the way through and you, um, human suffering is, is, is, is everywhere. No matter what, what they're presenting with. Yeah. 

Dr. Linda Bluestein: Okay, so now I'm gonna ask you the switch versus dial question. So I have some family members who seem to have a pain switch instead of a pain dial.

One of them that I'm thinking of in particular, um, I was trying to help them. They were, you know, elderly going through this terrible, terrible pain in the hip slash groin. They weren't able to really localize it. It, this went on for, for months. And, um, they were really, really struggling. We were all struggling to figure out what the cause was.

And eventually it was determined that it was probably the hip osteoarthritis. I mean, literally, I've never seen this before. I'm an anesthesiologist. I've done tons and tons of, you know, anes, [00:44:00] anesthetizing people for hip replacements. 

Dr. Adriaan Louw: Sure. 

Dr. Linda Bluestein: And this family member was literally like riving on the gurney, like just.

Lounging around, but normally has no pain. But for this period of months before the surgery was like, you know, flopping around like a fish, like terrible, terrible pain, had the surgery, like comes outta the procedure, it was a spinal and sedation, the pain switches turned off, there's no pain. And they had no post-op pain.

Like they never took any opioids. They didn't, you know, and they got back to activity. And this particular person really seemed, and I, there's more than one of them by the way. Um, I have a couple members of my family that really seem to have either tons of pain or no pain and not necessarily super connected to what's happening in their body.

Whereas other people like me, I feel like I can feel everything. Do you have an explanation for that? 

Dr. Adriaan Louw: Well, first of all, you violated, the first rule of medicine is we don't treat family. Um, it's, it's like the mechanic's car is always broken. And, [00:45:00] um, yeah, this is a really good question. Again, we know that everybody's pain is different.

Mm-hmm. We know everybody's experience is different. The day and date and time that we meet, I meet you today for the first time, is you are a sum of everything that's happened in your life. That's all the memories, all the experiences, good, bad, ugly. And so at this point is where I meet you. So in, in a family member's case that has something like that, um, again, why does one person respond this way and another person that way?

Welcome to behavioral medicine 1 0 1. We don't know. It, it, there's, there's 150,000 reasons for it. Mm-hmm. Um. I just find it extremely fascinating. I've always told my students I never understand it or I, I don't. That one person sprains his ankle and stands up and go, I'm good. Let's go watch the game.

Another person sprains their ankle and it's a life of pain because there's so many things going on from their beliefs, how they were trained, their, their social upbringing, how did they learn about pain, their belief system. Um, you know, sometimes it could be that there is [00:46:00] a really bad hip and we've been kind of playing at the margins and not really checked, oh my goodness, there is a really bad hip.

We take care of that nose csection instantly, and boom, and they feel fantastic. That happens, right? And so it's, it's, it's truly a combination. I would argue that. People that have these pain switches from everything or nothing. Um, if you had one of my, my gut, my hunch is probably they have a very strong belief in a certain direction.

IEI have a bad joint, and if you fix a joint, I'm better and it just turns it off. People that have the dial is probably people that live more with pain with the nervous system has, like I said, a good day, a bad day kind of oscillates, but it's, it's always at a heightened state and it can go a little bit up or a bit down, but it's never on off.

Mm-hmm. Um, more than likely. Um, yeah. But, but you bring it a very good point because I got attacked on social media so many times. People say, well, all that Adrian, as he talks to people about pain, and I'm like, you out of your mind. Um, you can literally come in our clinic and I can tell you that 90% of my patients, when I'm done with my examination with them, they start [00:47:00] crying.

I mean, I'm like, what's wrong? They say, that's the most thorough medical exam I've had in 10 years. Hmm. I have no business sitting with you and telling you, Linda, let tell you why. It hurts more on a Monday. I, if I haven't checked to make sure your back is okay. Your hip is okay. Mm-hmm. Do you have pulses?

How's your blood pressure? I gotta check everything. And when everything checks out, then we can say, well, let's give you another explanation, maybe why it hurts. So, but you have to do our due diligence because I would feel terrible if I teach you all about pain. And then we find out, oh my gosh, you did have a really, really bad hip that if we replace the hip, you're suddenly like, I feel so much better.

Then that's, that's not cool. So then the medical providers need to understand, we gotta do our due diligence first and make sure everything checks out and then we can go there. And that's, that's what pain science really comes in and say now that things that don't make sense, the hip does look okay, the back does look okay hip, but why do way it hurt?

Or let's give you another explanation for how pain actually works. Oh, that's different. And I think it's a critical element of this. 

Dr. Linda Bluestein: And for. [00:48:00] Parents that might be listening. I, you know, I, I'm seeing more and more children with chronic pain and, uh, why I often say persistent pain rather than chronic pain.

I sometimes remember and sometimes forget. Uh, but so for children that are having persistent pain, are there particular things that you would recommend to parents? And I guess maybe actually let me back up and say, are there certain things that you would recommend to parents, even if their child doesn't have persistent pain, but that might help them be able to, uh, cope with future pain in a, you know, the healthiest possible way?

Yeah. 

Dr. Adriaan Louw: Wow, you're throwing me a lot of grenades today. So the, um, the easy answer today, the best way to treat a child in pain is to, in a, a very, very nice politically correct way, remove the parent. I mean, Linda, we have enough resources to show that how parents behave, drive their kids pain. And I have kids, I love my kids to death, but there's a study that came out.

They showed, they took kids that went through orthopedic surgery. As an anesthesiologist, you will appreciate this. And then they tracked these [00:49:00] kids a year out. A year later, they classify the surgery as success, or not a success based on pain, disability, et cetera. But then they looked at everything they measured around the time of the operation to see could they predict it.

And the number one predictor of children hurting one year later was the parents' catastrophization around the time of the surgery. Oh, wow. And so my message to parents is, chill out. Let the healthcare providers do what they do. So when, like in our clinic, we, we used to see a lot of kids with CRPS, very complex condition, and a third of them with children, we would not treat the child unless we had a session with the parent and it was all about how they should behave.

Mm-hmm. Because the reality is if you freak out, the child freaks out. Right. If you, and I'm not having a go at parents, I, I think they're absolutely important. Um, I think we need to think about how we act around our children when they hurt. Um, and if they don't hurt. So if little Johnny falls off the swing set.

Not freaking out, making sure. It's kinda like the old days of you, you know, check, make sure they're okay. Rub the dirt off, make sure the elbow is [00:50:00] moving. They're good. Okay, I think you're good. Go play with your friends. Again, that social interaction part, uh, et cetera. But parents play an incredible role.

Mm-hmm. But when it comes to children's pain experience, kids are plastic. I mean, literally they fall out of a tree. They get up in the tree again. Um, I think they have incredible ability to, to shift with a lot of the therapies we do. But often it's these other things. Now kids don't worry about work. They worry about social interaction.

Like, am I different than my peers? Hmm. I, I look different. Um. I can, they can go out and recess. I cannot, I'm different. That is a big stressor for them, uh, where we worry about going back to our job, those kind of things. So they're a little bit different in that regard. But kids are awesome. They're extremely resilient.

The bad part of this whole conversation is unfortunately, if trauma enters the picture, then we got a whole different bad, um, uh, issue. So if children don't shift quickly, we have to probably assess a little bit deeper than that. But my message to parents for all of us, you know, even with our grandkids, would be to just, you know, just if any way possible, if everything checks out, don't, [00:51:00] don't freak out.

Take a deep breath, downplay it a little bit, make sure they're okay. And by the way, get them away from the meds because good Lord, I, I think kids eat ibuprofen like Skittles anymore. Mm-hmm. Um, you know, my kid, my son came home from football and it was just ibuprofen. I'm like, dude, I teach the classes. You, you're embarrassing me.

You know, those kind of little things I think is, is imperative for us. But yeah, I hope that answers the question. Yeah, 

Dr. Linda Bluestein: no, definitely. And, and I. I really think that educating the parents is so, so important, and I definitely give them resources and things and, and oftentimes, you know, they're dealing with their own thoughts about their child.

If their child does have a, you know, serious medical condition, they're, they're dealing with their own grief. And, you know, I, I encourage them to get counseling for themselves and deal with those kind of things. Um, also. Boy, what you said about trauma. Yeah. It's extremely common with the patients that I see that there's some trauma in their history.

And of course, you know, we're living in difficult times. Of [00:52:00] course our ancestors did too. But we have certainly a lot of challenges. I don't know that anyone gets through childhood without at least some trauma, but it's certainly a, uh, a, um, a spectrum, right, where some people have, you know, tremendous, uh, things that they've, that they've suffered through and other people, you know, I remember, uh, being in a different family member's, uh, funeral and listening to my husband, talking to his siblings and thinking, wow, they had like an incredibly normal childhood.

My childhood wasn't like that at all, and it's nothing that my parents could have done differently. Um, but it was, it was really eyeopening. Like, wow, some people grow up like camping and doing, doing those kind of fun things. So yeah, I think the parents are, are super important. And it's it, when you were saying that also reminded me when I was an anesthesiologist.

There were some patients that really, really wanted to be there when their child went to sleep. Yeah. And it was fascinating because there were studies that showed that the calm parents who really didn't need to be there had the [00:53:00] most beneficial effect on the child. And the really, really nervous parents who wanted to be there had the most detrimental effects on the child.

So the parents who were like, no, I'm fine. You know, you can go ahead and take them back. So it, it's, uh, yeah, it is interesting. As a, as an anxious parent myself, I'm, you know, it's, uh, yeah, 

Dr. Adriaan Louw: no, that, I mean that, that, yes, absolutely. Parents, you know, I, I'll tell you this. We, I told you about the middle school studies.

We did, um, we did a study in California and 4G COVID stopped us. We have the data, we never publish it because I need more data, we're gonna bring it back again. But we, we trained the parents about paying, not the kids. So we took a class of middle school children, but the parents had to come in for a parent teacher meeting.

So we trained the parents, but we tracked the kids. And it was fascinating because the more the parents learn, the more the kids' behavior 'cause they filter down, right? Mm-hmm. Mom and dad basically filtered it down to the child and then they responded. And so, yes, a parent role is huge. It's, it's, it's absolutely fascinating, but [00:54:00] it's critical in how a child experiences pain.

Dr. Linda Bluestein: Yeah. No, I can definitely see that. Are there certain things that excite you about the future of pain, neuroscience, or any particular things that you're working on right now? 

Dr. Adriaan Louw: Yeah, it's a lot. I mean, there, there's so many things that are happening. I mean, obviously the world of plasticity, like I said, things are changing.

We are brain scan technology. In the early nineties, we started scanning brains and we saw these blobs pop up and we got all excited and now we're getting better at those things. So we are learning more about the brain. The, the, the connection project was completed in about 20 13, 20 14, where we. The brain connects itself.

So really, really cool. So there's that whole brain. What the brain stuff does. I think, um, the future of things like artificial intelligence, um, virtual reality, augmented reality, um, I spend a lot of my time in CRPS related research as well. Mm-hmm. And so what we can do at virtual reality where we can mimic body parts in real, in space that people can manipulate as opposed to their painful limbs.

Um, a [00:55:00] lot of cool stuff. But I think, um, the one that excites me, probably a lot of this is, is I do believe, I strongly believe there is a pain awareness coming bigger. You know, you mentioned no aplastic pain and stuff. There was a small zealot group of us in the mid 1990s that talked about all these things and we got excited.

There was seven of us. We met once a year. Now it's front and center in medical journals, in physical therapy journals. It's becoming mainstream. And I've always said, if we can take. In a unified approach and we all speak the same language. Mm-hmm. That's the physician, the therapist, the psychologist, whatever.

We all look at it the same there. There's no way we cannot move it. So I think the pain phenotyping, which is truly that buckets, we put 'em in between. No. Aplastic, nociceptive, peripheral. Neuropathic is, it excites me because I think we're finally, as a community, we're getting here. Where at, where we finally made it here, and then, then you go from there.

Mm-hmm. Um, and then, you know, our patients are getting smarter. Our patients, we've never really tapped into them as the, as an part of the answer. We've always [00:56:00] had the answer because I'm the provider, so. Mm-hmm. I give you the answer, but there's a lot of cool things happening. I think people are doing a lot of lifestyle medicine based stuff.

We, you know, nutrition and, and, and, and, and sleep and, and exercise and de-stressing is becoming mainstream. I mean, Linda, when I was growing up, I mean, yoga was something that weird people did way out there in the middle of whatever, and, you know, and then you didn't care about drinking water. Those things are becoming mainstream.

Mm-hmm. And so lifestyle medicine and pain science is again, hand in hand. And so there's a lot of things that excite me. Like I told you, I can take you in any direction right now, but those are the things that are front and center with me right now. Yeah. 

Dr. Linda Bluestein: Mm-hmm. And I totally agree about speaking the same language I have.

This happens all the time where somebody says, I went to, and I, and I hate to say, but this, it's often a chiropractor, and they told me I had the worst spine they'd ever seen. And oftentimes they're young and I'm thinking, oh my gosh. Like even if you do have [00:57:00] some problems with your spine, that type of language is, is so harmful, right?

There's lots of studies obviously looking at, at that. So it's, um, you're right. We all need to be on the same page and we really need to think about the words that we use 'cause they have such a huge impact. 

Dr. Adriaan Louw: Oh, absolutely. Words that harm, words that heal, I mean, all these yucky words. And I, I need people to understand, you know, I think one of the coolest things we did was in the late 1990s, we started scanning people with no pain and they found out suddenly there's a whole bunch of people walking in downtown, um, San Francisco today with a bulging disc.

And life is amazing. Mm-hmm. And there's people with rotator cuff issues and people with hip labrum issues and people with, uh, this and that and whatever. So, and. Yes, we find stuff in the scans, but it's not always the end of the world. And but, but those things we find in the scans come with words that scare people, torn, ripped, ruptured, bulge, herniate.

If you told me that, I'd be definitely afraid to move again. And really what it just tells us, it's like, yeah, you had to, you know, [00:58:00] you sprain something, you strain something and tissues heal. I think one of the most incredible things on this planet is that I can literally sit at my desk right now, cut myself, it'll bleed and it will heal.

What a great thing. I always jokingly tell clinicians, I said, you need to put a little sign in your waiting room that sits there and flashes every 10 seconds. Tissues heal. Right. To a certain degree because you sprain your ankle and a few months later you go, well, it's better now for, you know, in this podcast with an EDS population, you say, now, wait a minute.

Truly it, it is obviously a little bit more challenging, but tissues do get better. We do strain them more. We may injure them more, we may be stress them more, but they can recover from it. And that's one of the beautiful parts of our body unless it's truly something significantly, uh, prohibiting it. 

Dr. Linda Bluestein: And, and when I learned about mast cells and how much mast cell mediators influenced pain processing, that was another like huge.

Period of my life where I was thinking, wow. 'cause so many of these people that have connective tissue disorders are somewhere on that mast cell [00:59:00] activation spectrum. So that's probably contributing quite a bit. 

Dr. Adriaan Louw: Yeah, I, I, you know, in the near, in a, in the pain science world, we've always talked about the nervous system, but neurons, axons or whatever, and then, you know, at some point we kind of bumped our head against the wall.

We're like, hello, there's an immune system, right? And the immune system talks to the nervous system and vice versa. For the longest time we said a neuron basically it, this side connects, it just sends a message through, but there's a, there's a immune cell that sit next to it and what happens in the immune system influences it.

So yes, um, we are becoming way more aware of the interplay between these and huge immune responses that changes the brain's spasticity. It changes the brain's processing, it changes the sensitivity of the nervous system. So, um, and by the way, that then brings us full circle to things like lifestyle medicine, your sleep, your nutrition, the stuff that mm-hmm.

Can drive your immune system very powerfully. So, um, it's fascinating and. Again, there's so much we don't know yet, but we do know more than last year, hopefully. 

Dr. Linda Bluestein: Right, right. Yeah, and And it's funny [01:00:00] that you mentioned those things because I have an acronym that I use to describe the method. I basically take in my clinic and it's men's PMMS, and it stands for movement, education and the education pieces, of course, pain, neuroscience education specifically.

So it's movement, education, nutrition, sleep, psychosocial modalities, medications, and supplements. And out of those three ms, I have movement first and medications last because so many people, myself included, right? I thought, I thought I just hadn't found the right pill yet. I kept thinking, as soon as I find the right pill, my pain will be better.

And it turned out it was obviously way more complicated than that. 

Dr. Adriaan Louw: No, absolutely. But I mean, it's a society, right? We all want the pill to, to lose weight. We want the pill for this, a pill for that. And by the way, I'm an American, so supersize it while you're at it. And, um, it's, uh, and I'm not making, there's a, there's a time and a place for it.

The right medicine at the right time. At the right place, right? Right. I treat a lot of people, for example, on membrane stabilizers, that I can tell you straight up, I could probably not touch, [01:01:00] physically touch in the clinic because they're so sensitive without that medication. Right. Or maybe a low dose antidepressant.

So I always say skillful delivery, that's the word. Skillful, right? The right medicine at the right time. And that's where my physician comes in. The pharmacist can help, et cetera. But I love the idea that that should never be a first thought. Mm-hmm. It should be kind of towards the end. But, um, again, I'm sitting here as a non.

Pain participant in this presentation today. If I was a patient and say, well, that's total crap. I want a medicine because I hurt, like act today. So I I, I can only fathom where they're coming from. They want help and then, and so I get that. Totally get that. 

Dr. Linda Bluestein: Yeah. And that's, and that's where, you know, I, I explain if you get 10% out of this and another 10% out of that, and you find five things that give you 10% improvement, now you've got 50%.

And so you're, you're, you're well on your way. And 50% improvement actually is huge. Right. If you think about it, 

Dr. Adriaan Louw: it's huge. Yeah. I would take that any day. 

Dr. Linda Bluestein: Yeah. Yeah. I love how you 

Dr. Adriaan Louw: explain that. Yeah, that's a great way to think of it. You have these, if you just get with better in each one of them, then yeah.

Dr. Linda Bluestein: Yeah. Like, I, like [01:02:00] when I first had my, my physical therapist, you know, tried using tens on me and I was like, Nope, it didn't cure my pain, therefore I kind of discarded it and threw it out. Yeah. And now I realize that, you know, if that helps a little bit, then why not? Why not keep it as one of my tools in my toolbox, and if I am.

Having a, you know, rough day, especially like, why not use it? Uh, you know, so, 

Dr. Adriaan Louw: wow. That's, that's, that's a great way to look at it. That's, see, I learned something today. I could, I have now. So 

Dr. Linda Bluestein: the 10% rule. Yes. Awesome. Awesome. Um, so we like to end every episode with a hypermobility hack. Um, do you have a, a hack that you can give us?

Dr. Adriaan Louw: Ew, I, you know, that's, that's a good question. I, I don't know, because again, like I said, I, this is not an area. Um, I think the biggest thing is I want people to know is that, um. When, when things go bad is to know what to do. We always talk about coping skills, right? There's five things I always tell people when you're having a bad day, we make a little [01:03:00] sticker.

We put it in people's exercise folder. Number one, problem solve. Why having a bad day today is we have to, we have to learn something. Well, I walked a lot yesterday. Well, can you see if you walked too much, then this happens. Okay? Number two is help yourself first. Before you call me, put your ice pack on your heat pack your 10 units, whatever you have found.

Number three, prioritize. We wake up every day. I hope people wake up in the morning, Ooh, these are all my plans for today. Then you're having a bad day. And we don't draw a line through the sand. I'm just gonna lay on the couch. We may move a meeting to tomorrow. We may only sweep one room, but not all the rooms.

So you prioritize your day. There's the getaway. Sometimes we have more pain just because today's you are in a stressful situation. So the office worker step away from your desk and go get a drink. Um, or the, the, the busy, um, uh, um, homemaker just, just go check the mail even though you know it's not there.

Right? And then basically, and then with that, we always talk about red dot exercises. And I'm a physical therapist, Linda, so patients have exercise. I always give them two or three that I put a big red dot and say, well, you heard you only do those two or three. Oh, [01:04:00] not all the other ones. Because if you do too many, then you're gonna say, I'm not gonna do it.

But you cannot do nothing. And so typically what we find in patients on a day that they're having a bad day, they work through these five steps, they find ways to get through. They go, wow. I'm better. Mm-hmm. Or they come back and say, I had a bad day. And they say, how you doing today? I'm okay today. See, you can do this.

Mm-hmm. You can help yourself. And so that has always been powerful for me to teach people coping strategies, um, accordingly on a, on a bad day. Because when you have a bad day, you need to know what to do about it. 

Dr. Linda Bluestein: Definitely. And when you said that, it reminded me of one of, I've had physical therapy since I was a teenager, uh, you know, in and out, you know, and one of my favorite physical therapists is named Brad Balki.

I have to give him a little shout out. Uh, I, I don't know that he is listening, but, uh, if he is, he, he helped me out a lot because after I had, uh, major spine surgery, I had a tarlo cyst and I had surgery for that. And I remember going into one of the sessions and he, he was so great at like helping me learn the nervous system has to feel safe and starting to use my [01:05:00] hamstrings again in a, in a super gentle way.

No way. It's just laying on my belly and literally moving my leg. Like I'm moving my hand for the people who are listening. Um, just a little small range of motion and just reteaching my brain that this is safe and it's okay. And I came back to one of the sessions and told him, oh, I'm, I'm sorry, I didn't do my exercises this past week.

And I was in that like. Place of my brain of like, not the best place. I wasn't in a terrible amount of fear, but some, and he said, well, but how do you feel? And I said, oh, actually, I, I feel pretty good. And he goes, that's great. Like, so he reframed what I was thinking. Um, I was taking it from like a negative place, but he was like, you know, I want you to do your exercises obviously, but you didn't, you know, have nothing terrible happened, uh, because you didn't do them for a few days.

So I think sometimes that reframing is really helpful. 

Dr. Adriaan Louw: Oh, absolutely. Absolutely. Yes. Yeah. 

Dr. Linda Bluestein: Before we go, uh, first of all, I wanna thank you so much for chatting with me today. [01:06:00] Like I said, this has been on my bucket list for a long time. 

Dr. Adriaan Louw: Yeah. Like I said, I think you need a different bucket list. But thank you for having me.

I appreciate it so much for having me. Yes, 

Dr. Linda Bluestein: yes, yes, absolutely. So, uh, before we go, can you just let us know where we can find you so that people can learn more about your amazing work? 

Dr. Adriaan Louw: Um, I mean, I work full-time at Evidence in Motion, which is an educational organization for healthcare providers. And then for patients, um, you know, there's a, there's a really cool little website.

It's free, it's y you heard.com with a double why, so why you heard.com and there's a lot of videos on there that, but I actually teach people about pain so they can learn a little bit more about it. And if they're looking for providers that we have, we have trained, there is an interactive map there they can click on and find somebody in their state that is, that we've trained accordingly and they can maybe seek up some care more locally for them.

Dr. Linda Bluestein: Fantastic. Well, thank you so much Dr. Louw for coming on the Bendy Bodies podcast, sharing your vast knowledge. Of course, we just hit the tip of the iceberg, but I [01:07:00] think this is really valuable information that it would be helpful for a lot of people. 

Dr. Adriaan Louw: Thank you so much for having me, and I best wishes to all your listeners and I hope they, they have a good journey going forward.

Dr. Linda Bluestein: Well, I really enjoyed that conversation with Dr. Louw and hope that you found it really, really helpful. I do feel like the biocycle social model of pain is so often misunderstood and we need to consider all of the factors, and I thought he really did a great job of explaining that. And I wanna thank you for listening to this week's episode of the Bandi Bodies.

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