Understanding the Brain's Role in Chronic Pain with Kaitlin Touza, PhD

[00:32] 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 am really excited about this conversation today because back, oh, it was probably around 2009, 2010, when I was having so much pain and I was referred to a psychologist for cognitive behavioral therapy for my pain. And I was so upset with the doctor who referred me, thinking she thinks it's all in my head, and this is not going to be helpful. And it turned out that actually learning about pain psychology was so beneficial for me.
[01:10] Once I understood more about pain processing — and remember, I was an anesthesiologist at this time, so I'd already gone through my whole residency and I was working for a number of years — but I hadn't really learned a whole lot about some of the other factors that are involved in pain processing, and there was so much more new literature. So once I understood about that, it really helped me to get a better handle on my pain and to live with a much higher quality of life and more functional capacity.
[01:39] So I'm really excited to have this conversation today with Dr. Kaitlin Touza. Dr. Touza is a pain psychologist, fellowship-trained at Stanford, an acting assistant professor at the University of Washington's Center for Pain Relief. She provides evidence-based individual and group interventions, including — I'm going to list a number of acronyms — CBT, ACT, EAET, and PRT. She also provides consultation to a broad population throughout the Pacific Northwestern region and Alaska through UW TelePain's program. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Be sure to stick around until the very end so you don't miss any of our special hypermobility hacks. Let's get started. Dr. Touza, I'm so excited that you're here to talk about this really important topic.

[02:31] Kaitlin Touza, PhD: I am so thrilled to be here. This is such an important topic, and I've been listening to your podcast, and I'm excited to be part of it.

[02:38] Dr. Linda Bluestein: Aw, thank you. And this is such an important conversation. We know that there are other factors that contribute to pain besides tissue injury, but a lot of people might not be aware of that or be aware of how important that is. So could you start out by telling us what some of those factors are?

[02:54] Kaitlin Touza, PhD: Thank you. And I think it's helpful to understand the different factors that contribute to pain by starting with thinking about what pain is. We talk about pain signals coming from the body, but really what's coming from the body is signals that indicate tissue damage has occurred or tissue damage will occur if we stay in contact with whatever the stimulus is. And so this tissue-damage-indicating signal comes into our central nervous system and our central nervous system processes it. And if multiple other factors also contribute to this being read as important to pay attention to, then we experience it as pain. So pain is a response to tissue damage having occurred, or the potential for tissue damage if we don't change our behavior.
[03:38] So when we're trying to understand what factors other than tissue damage could contribute to pain, we're thinking about: what is your nervous system going to warn you against if you are experiencing too much of it or exposed to too much of it, because it's likely to cause a tissue damage issue in the future? Those are things like behavioral factors — repetitive movement, body position, exposure to environments that cause an inflammatory or stress response. These are things that our nervous system is going to learn from and try to warn us against.
There are cognitive factors like stress and depression and anxiety and trauma exposure. All of those are going to shift what our nervous system is doing and put us into more of a heightened danger-monitoring mode, recognizing that pain is a danger signal. And so if you have one thing going on in your nervous system that says danger is present, all of our other danger-monitoring systems — like pain, or even the way that our eyes work and our vision — our nervous system is going to shift into that danger-monitoring mode, which is going to bring more pain awareness into our awareness, or more of that tissue-damage indicator into our awareness.
And then there are social and environmental factors — things like whether you have good social support, whether you feel it, whether you're having positive social interactions or feeling isolated, whether you feel secure about your future and your current environment, things like that. And then we can expand beyond that to some more individual risk factors or things that have been associated with chronic pain, things like sleep disturbance, which is going to shift all kinds of things going on in our brain and body that might contribute to an increase in pain awareness.
There's also repetitive movement and work-related factors — being in a position that is somewhat inflexible, having to do the same activity frequently, a work environment that is not supportive so we don't feel secure in that job. Things like that are going to contribute. You think about the security of our job and ultimately our feeling of security in our life and how connected that would be. It can be things like poor acute pain control after injury or surgery, and the distress we experience along with that, fear of pain itself, anxiety about surgery or about injury — those things can contribute to or be associated with the development of chronic pain.
There are also genetic factors that we think may predispose certain people toward likelihood of developing chronic pain. Overall disease burden — medical comorbidities are going to be part of it. You think about a body that is dealing with a lot of potentially dangerous stuff, which is going to heighten this danger-monitoring system. And then things like health behaviors — what we're eating, how that impacts our immune system, how our immune system is impacted by the other things I just mentioned. So at the core, it's about danger monitoring. But our danger system is robust and it responds to a lot of things. It can be impacted by all kinds of things in our life and in our environment.

[06:46] Dr. Linda Bluestein: That's so fascinating. So we can see how easily a person can end up in this vicious cycle of chronic pain, because you have pain, so then you're not sleeping well, you feel anxious, you feel depressed, you tend to socially isolate, and then that makes the pain worse, which then can contribute to those things. So you can really see how once chronic pain develops, a lot of those things can really make it persist and really contribute. Yeah, that's interesting.

[07:13] Kaitlin Touza, PhD: Absolutely.

[07:14] Dr. Linda Bluestein: So some people might hear some of those things and think, does that mean that the patient is at fault? Do you get that question a lot?

[07:23] Kaitlin Touza, PhD: Yeah, I get it a lot from patients that I talk to, as well as physicians who really don't want the patients they work with to feel that way. How do I talk about this and not make it feel stigmatizing or blaming, right?
[07:40] We want to think about it like this is not a choice. This is not a moral failing. This isn't something that somebody chooses and then continues to choose and ultimately is the agent of this occurring. Chronic pain develops from multiple different reasons and it is largely an instinctual process, remembering that we are designed — our central nervous system is designed — to keep us alive, which means that it is a danger and error-detecting machine. That is what it cares about more than anything else.
[08:06] And so if you have experiences with pain impacting your life, your well-being, your emotional well-being, the security of your future, your relationships, if it's taking away your ability to do things that you find fun — remembering that leisure and fun is a huge part of being a well human — that is going to lead to shifts in the way that our brain is working, the way that we're experiencing different sensory things. And that's also going to contribute to a whole shift in immune system function, organ function, and general nervous system function. And this is not necessarily stuff that people have control over.
[08:47] We can impact it by the way that we think and the things that we do, but you want to think of it as an instinctual and largely subconscious learning process. And so when we're trying to think about an individual's role in that, you're not responsible for that any more than you are for not liking tomatoes, for example. Or — I think it was episode 101, I really enjoyed your guest on that show — they used an example of imagining sucking on a lemon and your mouth producing saliva. That is a perfect example of what we're talking about. Can you affect that by thinking about a lemon? Yes. But is it your fault that your salivary glands respond to that thought? No. You don't have control over your autonomic nervous system. That's why it's called autonomic. You can impact it by the things that you think about and the way that you encounter stress and the way that you engage with activity and the different things that you consciously have control over — you can influence those subconscious processes, those autonomic processes — but it is not a moral failing and it's not something people have that level of control over.

[09:55] Dr. Linda Bluestein: Yeah, that's really helpful. I know for me, when I was really in a lot of pain, I did feel like it was my fault and if I just did something differently, then I could change it. And ultimately, learning about pain processing, like through this conversation, really did help me. So this is why I feel like this is just so important. And we know that there are circuits and parts of the brain that are involved in pain processing that I think it might be helpful for people to understand a little bit more about, so that they know that this is really coming from a very scientific foundation — this is not just a theory.

[10:31] Kaitlin Touza, PhD: Yes. And this sort of pain neuroscience is some of my favorite stuff because I really do think it helps to demystify why — if you don't have control over the pain itself — the control that you have over your emotions and your thought processes and your reactions, or maybe your reactions to things that you can process through, that is where you have control. And through that control, you can affect these other systems. And when I say you have control over that, I do want to say these are skills that we have to learn. So if you're listening and saying, "I don't feel like I have control over that," that may absolutely be true. These are skills just like anything else. You practice a skill and you start to realize, okay, this is how I impact these different systems in my body or my mind by shifting the way I think about something or how I engage with something.
[11:20] So thinking about the circuits of the brain, the areas of the brain that we are aware of as being part of our pain-processing system, is helpful for that. I like to think about pain processing as a whole-brain experience. Pain isn't necessarily localized to one part of our brain. It is an interplay of multiple systems where the behavior of one system influences the others and the behavior of those other systems comes back and influences the rest. So none of these things are separate. They are all working in tandem and ultimately influencing each other.
[11:47] The prefrontal cortex is a big part of it, and this is where you have things like personality, the inhibition of behavior so you don't fight people all the time. It's also how you direct your attention on purpose. So the ability to shift attention from your internal sensory experience to things that are happening around you — that's hugely impacted by chronic pain. And it's your logic process, your ability to plan things out and say, this is what makes sense. So that thinking brain is a big part of your processing of what is going on and what do I need to do about it.
[12:30] You also have your limbic system, which includes things like your amygdala and your memory centers, your emotional responses to things. So you have your prefrontal cortex, your logical thinking brain, and you have your amygdala and your limbic system, which is more of our instinctual reaction to threat, as well as pulling on memories to help in response to threat — what happened before, what do we do now based on that, things like that. And you could simplify it by saying your thinking brain and your amygdala and limbic system kind of work against each other, because when your threat response is very active, your frontal lobe is not as active. And so you have a harder time thinking it through and saying, "Okay, I'm okay right now. This hurts, but ultimately there's something I might be able to do about it, so let me think through what could be helpful, what helped last time." It's harder to think that way when you're in a high level of pain. So people who have experienced that, or have had a harder time controlling their irritability when they're in a lot of pain, are noticing that shift in brain function in real time.
[13:36] You also have parts of your brain that are responsible for motivation and reward. That shouldn't be a surprise knowing how much pain and our experience of discomfort impacts our ability to engage in things and enjoy them, and also how pain really wants us to stay away from stuff that hurts. So it really shifts our motivation for different things. But that's also the part of our brain responsible for eating motivation — what do we want to eat, stuff like that. So when you're in pain, it influences that. It influences our sexual function — that's the same part of the brain as well. So when people are noticing, "I have this pain and now all this other stuff is changing too, I used to feel this way and now I don't," there are changes associated with pain that might be responsible for some of that.
[14:24] You have this part of your brain called the anterior cingulate cortex, which I find to be one of the most important pieces. This is your error detection — it helps you to recognize when things aren't making sense or something's gone wrong. Attention and motivation are part of it too. But the interesting thing with pain is that — what we think, anyway — this is the part of the brain responsible for pairing distress and pain. So why are you upset about pain? Why are you afraid of pain? Why are you angry about pain? That's that part of your brain. And we know that when people have been in pain for long periods of time, that part of your brain becomes less diversified, meaning there are fewer neurons there. You want to think about that as meaning there are fewer ways for you to react to pain. There's one path up the mountain, which is: when you're in pain, you're upset.
[15:12] And so as people are going through something like pain psychology, or they're having more successful experiences in pain management in other settings, they might start to notice that they're not feeling as upset. And that would be reflective of that part of your brain growing more neurons, becoming more diversified. There are more paths up the mountain. There are more ways to react to something. And so we can see changes in the brain of people who have chronic pain in some of these different parts and notice that that corresponds with a change in their experience of pain.
[15:42] You also have the somatosensory cortex, which is kind of what hurts and where, and also why you move your hand away from the hot burner before you really think about it. So that part of your brain can really control you and also you can control it.
[15:55] The insular cortex is interesting. The anterior insula is the only part of our brain that is consistently associated with the experience of pain. The insula is also the part of your brain that pairs sensory experience with awareness and with emotion. So it's really responsible for our concept of self, our consciousness. The part of our brain that is active with pain awareness is also the part of our brain that allows us to be aware of ourselves. So it's a pretty profound thing to think about.
[16:30] You have parts of your brain that are part of the endogenous opioid system. Your endogenous opioid system is a system that helps to reduce pain awareness. Things like the periaqueductal gray, which has a big influence on our sympathetic nervous system as well as this modulation of pain awareness. It provides a lot of the dopamine — it projects into our frontal lobe and has a lot to do with dopamine production and use and things like that. When we're talking about your subconscious brain — that salivation with the lemon — that's a lot of what the periaqueductal gray is doing for us.
[17:05] Your endogenous opioid system quiets down some of that pain awareness, but it's also responsible for parent-child bonding. It is what helps us to enjoy social experiences and interaction. It's what motivates us to do it in a lot of cases. So positive social interaction is one of the strongest indicators of safety for a human, and it's a hugely rewarding behavior. It also has a lot to do with reward and aversion behavior — do we like something or not. So when you think about our endogenous opioid system also being part of our pain-managing system, it really again highlights how important pain is to not just our survival, but our well-being. It's part of these same systems.
[17:56] And then one more is the thalamus, which is a little bit less interesting perhaps — it's kind of the Grand Central Station for our brain that sends signals to and from the body. It does other things too, and it is involved in some sensory processing, but for simplicity's sake, I call it the Grand Central Station.
[18:13] So all of these different pieces are working together, and what the patient is actually experiencing is changes in mood associated with pain, motivation to do things related to pain or not, changes in self-concept and self-judgment. And then all of that impact on our body systems — immune system function, hormone function, organ function — all of that is controlled by the brain and these systems in the brain. So pain is going to influence all of that stuff and be influenced by it. Which is helpful for us in pain psychology and pain management, because we can also harness the power of this neuroscience to reduce our awareness of pain. We can use it to push back against that tendency of our brain to hook onto the danger signal and stay with it.

[19:02] Dr. Linda Bluestein: Yeah, and while you were saying that about the endogenous opioid system and awareness of pain, I think it's also important to point out that we don't need to be aware of every little sensation. I sometimes joke that I can feel every cell moving through my body — not as much in a pain way as it used to be. I used to have hyperalgesia, so being hypersensitive to stimuli that are normally not really painful. I know that would be allodynia, sorry — hyperalgesia being that things that are normally a little bit painful are more painful, or allodynia where things are painful that are normally not painful at all. I used to have both of those. And so I think it's important to note that even if you work on a lot of this pain psychology, it's not that you're not going to be able to feel things when you should feel them. You're still going to feel them just fine.

[19:51] Kaitlin Touza, PhD: Absolutely. People will often wonder about that. They will say, am I going to stop feeling the pain that I need to feel? Your brain is not going to stop you from doing that. In fact, we have to do a lot of work to keep pushing the other direction because we are geared toward feeling that.

[20:07] Dr. Linda Bluestein: Yeah. And I also wanted to ask you — you brought up the autonomic nervous system, and the people who listen to this podcast most likely have Ehlers-Danlos syndrome or hypermobility spectrum disorder. A lot of them have dysautonomia, and we know there's a lot of overlap with that, and it might specifically be POTS, or postural orthostatic tachycardia syndrome, or mast cell activation syndrome. But when the autonomic nervous system is dysfunctional, does that contribute to the sensation of pain?

[20:36] Kaitlin Touza, PhD: Yes. Your autonomic nervous system is automatic — as it sounds, autonomic, automatic. And it is reading our brain-body connection, which is largely this autonomic nervous system stuff. And so if you are having a lot of autonomic dysregulation, your brain doesn't necessarily know why that's happening — the processing part of your brain. And so if your heart rate is fluctuating a lot, if you're having changes in the way your fatigue or energy resources are being used, if you're feeling generally ill because of stuff that's going on in your body, your brain is recognizing that and saying, "Okay, something is wrong. We are not okay. There are things going on that must mean we're not okay. So let's keep that danger-monitoring system on and maybe amplify it so that we're aware of things."
[21:25] And so something like a body sensation that might be associated with dysautonomia might come along with fear, whereas maybe if that wasn't what was going on, it might just be annoying. But when your nervous system is in this danger-monitoring mode, that's going to come in with "potentially something is wrong," and that fear will come. And even if you cognitively, intellectually understand that that's not what's happening — we're not talking about your conscious brain necessarily. That's part of it, so if you are thinking worried thoughts, that'll contribute. But even if you're not, this is the behind-the-scenes stuff that's saying, "If our heart rate is increasing, then there's danger, there's something wrong." And so that's going to push that danger monitoring up.
[22:15] The other thing to think about, which further complicates this, is that your brain is controlling these autonomic nervous system factors. So it's baffling and infinitely frustrating that the brain is responsible in large extent for what's going on with these fluctuations in body systems, as well as responding to what's happening in the body and then potentially further contributing to some of these dysautonomia symptoms and things like that. And so I think that's part of the maddening aspect of this — it is natural and instinctual to respond to a shift in body function and to take it seriously, and your nervous system does that, while at the same time, the response of taking it seriously might contribute to awareness of those symptoms, distress associated with those symptoms, and ultimately overall distress or danger-related reactions. They'll contribute to your awareness of pain because it's part of our sensitization process. If something in your nervous system has said, "We're in danger for some reason," you're going to notice all of it with more intensity. And so what that reads for the person experiencing it is: it hurts more and it's harder to ignore.

[23:30] Dr. Linda Bluestein: Wow. And that kind of leads me into the next question about attention, interpretation, and behavior. What should we know about that?

[23:39] Kaitlin Touza, PhD: So this is the learning process that I'm talking about. And again, this is why I want to keep repeating: this is not somebody's fault. This is not all in their head. This is not a choice people are making. Attention, interpretation, and behavior is how we learn and how we reinforce learning. And this is for anything, not just pain and danger-related things. But in this case we'll talk about those to make it make sense.
[24:02] So you notice something — attention. That can be on purpose or involuntary. Something comes into your awareness. Then we have an interpretation process, and that interpretation process can be very automatic, very fast, and outside of our awareness. A threat appraisal process where some sensory information comes into your nervous system and your processing centers, and your nervous system very quickly is saying: what is it? Is it dangerous? Do I have experience with it? Have I been able to stay safe from it in the past? Does my experience indicate I'll be safe? And what do I do about it? That can happen snap, real quick, and that's part of how we respond to something. It's part of why we might have an instinctual stress response to one thing and not another — because of some experience we've had in the past that says we don't have to worry about that, but we do have to worry about this other thing.
[24:53] That interpretation process is often accompanied by a conscious interpretation as well — thinking about it. What just happened? Why does my foot hurt? Last time this happened, I had to stop doing all this other stuff. Is that going to happen again? Am I going to have to take more time off work? So you have a thought process that's also associated with this more instinctual reaction process. That's why you take your hand off the hot burner before you think about it, but it's also why you might think, should I reach my hand into that fire to pick up my marshmallow stick if you've been burned before?
[25:30] So you have the conscious piece as well as the instinctual. Attention, interpretation — part of your interpretation is also your emotional response. Thinking about emotions as messengers: emotions are always valid, they're always important to try to understand because they're orienting you to an aspect of an experience. Your emotions are saying, "Pay attention to this part and learn from it." So it's really trying to get you to notice a certain aspect of something and think about it more. And then your behavioral response to that — it can be internal behavior, so more rumination and worry about something. It can be an autonomic nervous system response, which is going to reinforce either that something is dangerous or not dangerous. It can be what we do with ourselves, whether we change our behavior around a certain activity, whether we start avoiding something, whether we approach it with more fear in the future — the care we might take in doing something and whether we're doing it with confidence or with concern, that type of stuff. All of that is going to come back around and influence that attention process.
[26:55] Over time as that keeps going — that attention, interpretation, and behavior cycle — if we've had dangerous experiences with something, if we've had experiences where something has really impacted our well-being, our ability to do the things we want to do or need to do, if it has affected our ability to think or to engage in the stuff that we find meaningful, that's going to contribute to "I need to pay attention to this thing." And there are physical processes where if you do something and it hurts, your nervous system is learning from that always. Pain is a very fast teacher.
[27:35] You think about it: if you went to the same grocery store 1,000 times in your life and one time you had a fender bender and somebody was really rude to you about it, you're probably going to think about that every time you park in that grocery store. You're going to be a little bit more careful even though nothing actually dangerous happened — you were safe, they were safe, everyone's okay — but you're still going to worry about that. Now if something bad happened again, if you had another aggressive interaction or another accident, you might start going to a different grocery store even though nothing really bad ever happened there. It was just upsetting. So now let's say it's pain and something hurts and you're worried about injury, or maybe you have been injured before and maybe that's impacted your ability to work and your security and things like that. Big deal. So if you do something and it hurts, your nervous system is learning, and what it's learning is: you need to avoid whatever context that pain occurred in. This is part of how pain starts getting us away from environments and activities and things like that. This is not a moral failing. This is an instinctual learning process involved in exposure to stress.

[28:47] Dr. Linda Bluestein: That's really fascinating. And I love the grocery store example because that really makes it so much more tangible. We're going to take a quick break, and when we come back, we're going to talk about how we can use this information to actually live better with pain and lower our pain levels and improve our quality of life. So we'll be right back.
[29:44] Okay, so we're back. Dr. Touza, this is such important information, and I'm sure people are listening to this and thinking, well, how do I take this information and actually use it to make my pain levels better? What are some of the different approaches that can be used, and how can someone think about what approach might be most helpful for them? Can you tell us a little bit about that?

[30:07] Kaitlin Touza, PhD: Yeah, so there are a couple of different modalities specific to pain psychology, and I'll talk about those. I would also say that there are a lot of things we can do outside of pain psychology that are helpful. Within pain psychology, there are more than what I'm going to describe, but I'll talk about some of the most prominent therapies — the things that have been studied the most and that we have the most evidence on.
[30:30] One is cognitive behavioral therapy. Cognitive behavioral therapy is what it sounds like. You're looking at your cognitions, which are your internal behaviors — things like thinking and emotional responses and our awareness of those — as well as how we respond to those internal behaviors, and the behavioral piece: what are you doing, what are you engaging in, are the things you're doing ultimately leading to well-being, how do you make changes that help people feel better in their life. So you're going to address that interpretation process, you're going to address the behavioral response in that attention-interpretation-behavior cycle. And you're going to do things like building self-efficacy, building self-confidence in our ability to manage whatever it is. That matters because self-efficacy is saying, "Okay, I'm going to be okay" — and that's a safety signal. That says, whatever's going on, I can deal with it. So you recognize how can I internally increase my feeling of safety, reduce my fear associated with these symptoms, and ultimately get to a place where our nervous system is reacting less strongly to these things, where that anterior cingulate cortex is growing and we're not necessarily always responding with distress. You know, if you had all the same symptoms you have today and you didn't have the emotional impact of those symptoms, how would your life be different? What would you be doing differently? That's what we're thinking about with cognitive behavioral therapy. It's not about saying you shouldn't feel the way you feel. It's about figuring out ways to reduce that push of the danger nervous system taking over.
[32:14] You also have acceptance and commitment therapy, which is one of my favorite therapy modalities. ACT is really focused on increasing engagement with things that are meaningful to us and building psychological flexibility, because that is so important. As we are going through things and having frustrating experiences or having to change the way that we interact with something, being flexible in our thinking can be hugely helpful.
[32:40] We have pain reprocessing therapy and emotional awareness and expression therapy. Both of these are newer therapies. Pain reprocessing therapy is focused on changing pain processing, like it says — getting your nervous system to recognize that this pain is not about survival, it's not important to pay attention to, we can shift it out of our awareness. And you do that by challenging a lot of these danger-related cognitive and behavioral processes, as well as using mindfulness strategies to help desensitize, to help get your nervous system to desensitize to those pain-related signals or tissue-damage-related signals that are, in this case, not necessarily associated with tissue damage.
[33:28] And then emotional awareness and expression therapy, which has those other elements but incorporates more of the emotional piece. I think that's important because we're talking about trying to self-soothe or reduce our distress associated with something that is instinctually distressing — it's meant to make you feel upset. And so when we're talking about things like the presence of anxiety or depression, trauma exposure, continuous stress, work environments where we might not feel secure, social isolation, all kinds of things that would contribute to somebody feeling that things are not going well in their life, you're not always able to just say, "Let's challenge our thinking around that," and expect it to change. Sometimes you need to address more of the emotional piece, address unmet emotional needs, learn how to express emotions in a way that gives us some amount of catharsis so that we're not holding those difficult and traumatic experiences inside us all the time.
[34:35] By expressing it, we resolve it — remembering that emotions are messengers. When you process through something and you can resolve something like guilt by saying, "You know what? I learned that lesson. I don't do that anymore. I don't have to keep reminding myself of this thing," you can release some of the intensity of those emotions and how they impact our well-being and our thinking. Because if your brain is still saying, "Be on guard, don't do that thing you feel guilty about again," it can be hard to be like, "Okay, well, I'm okay. I'm doing well." And so sometimes you need some tools that will dig into some of the more emotional experiences from earlier in life or from current life circumstances to get to a place where your nervous system can recognize you are safe and this danger monitoring can calm down a little bit.
[35:21] And so again, if people are hearing this and saying, "You're saying it's my fault that I'm in pain because I've had trauma or because I've been through distressing experiences" — absolutely not. I'm saying that your nervous system is doing what it's supposed to do when you've been through trauma or distressing experiences. It's saying, "Pay attention, that stuff can happen again." And what we're trying to do with these different therapy modalities is say: yes, it can happen again, but you don't have to worry about it because you have a 100% success rate of getting through your bad days. You are able to do hard things. You've done a lot of hard things.
[35:55] So it's not about saying everything's okay and you should feel fine. It's about saying you can deal with it when it's not fine, and even when it's not fine, you can still be okay because you have been. And so getting people to recognize that — you go through stress and then you flip the coin and recognize, "I went through that. I got through that. And I'm going to be able to do the next thing." That's a lot of what these therapies are about. Building confidence in self, building self-efficacy around pain management, increasing engagement in the things that matter to us — because again, having fun, especially social fun, is one of the biggest indicators that we are healthy and well.
[36:31] And then also within these modalities, there are strategies that will actually help you to desensitize to pain. So it's not just, "Oh, you feel bad? Go to the party anyway." No. It's: "Okay, we have strategies that are going to help keep your nervous system in a calmer state during that party, or that road trip, or at work, or when you're trying to go to sleep, or when you're trying to read a book — whatever it is that you want to be able to do more of. We have strategies that are going to help signal to your nervous system that the danger-monitoring system doesn't have to be on right now."

[37:08] Dr. Linda Bluestein: And I know a lot of people have tried some of these things, maybe because every psychologist is going to approach things a little bit differently. And I think that part of it may also have to do with where you were at in your life and how you were educated about pain processing. Of course, most psychologists are not going to know a fraction of what you know about pain processing. So if someone has tried CBT, or EAET, or ACT, or one of these other approaches — we have a ton of acronyms, of course, DBT, we love our acronyms, right? — if someone has tried that before, is it worth trying again? Should they try something different? Should they try to find a different therapist? Are there some of these things that are available online? What would you suggest?

[37:59] Kaitlin Touza, PhD: I would say probably the most important piece is understanding pain neuroscience, whether you are the person with the pain or you are the provider delivering the intervention. If you want to be effective in pain management, you need to understand pain neuroscience because we don't have a perfect treatment for it. We can't say if you do this for eight sessions and you do all the homework, you're going to feel better. It's too multifactorial and too individual for that.
[38:23] And so if you can understand pain neuroscience — understand the way that our brain responds to pain, the way that our body responds to our brain's response to pain, the way those things interact — and then map that onto what you're experiencing, you can start to say, "I've noticed that my pain is louder when this happens. It's quieter in these other contexts." Then you can think about, well, why? What's happening? And then, what would help that? What would make me feel more like I feel when pain is quieter? What about that makes me feel good? You can come up with some things that would be useful to you.
[39:06] As far as whether or not you should continue or return to a therapy, whether it's CBT or something else, I would say this type of work is maintenance. It's not something that you do and then you're done with. It's like physical therapy. If you only do physical therapy during the course of treatment and then you stop, you're not going to continue to feel well. Physical therapy is something you're going to continue to engage in throughout life to keep those structures in your body healthy and moving. I would say that any psychology is more like that — you don't just do it and you're done. You have to keep using these tools, keep practicing these skills.
[39:44] And so if you've gone through something like CBT and you didn't find it to be a good modality for you, then you should try something else. Mindfulness is another modality we use in pain management, which helps us to tune into our body and our mind, decouple pain from distress — being able to separate those and do the mental exercise of how would I feel differently right now if I didn't feel upset about this, if I was just feeling the physical sensations. So if you find that one modality isn't working for you, there are all of these other ones to try out and see what works better for you.
And if you understand pain neuroscience at the core, you can say, "Okay, I'm having trouble with this aspect of my life, so I need to work on what my brain or body is doing in response to this certain thing, and then figure out a way to self-soothe or to distract or to change the way I engage in this or to address unhelpful thinking that's pushing toward that feeling of danger." Whatever it is — explore what's out there, find what works for you, understand pain neuroscience, and that's where you'll find the path to change.
[41:02] I think one of the most important pieces when we're thinking, "This didn't work for me," is to think, "Well, what did I want to get out of it? What was my goal? How do I get to that?" Because sometimes when we're having a mismatch, there might be an issue of: I'm trying to do this thing, but what I'm really trying to see change is this thing over here, and I'm not seeing how that connects. So getting an understanding of why you're doing something, the rationale behind it, and then making it your own, knowing that you are the best judge of your own experience — if something isn't working for you, it's not necessarily that you need to learn how to do that thing better. It's saying, "Okay, this isn't working for me. What it's supposed to be doing is helping me to think less about pain, but this strategy isn't working. So what is something that helps me to do that, and how could I do more of that to beef up my brain's ability to shift attention away from something?"
[41:59] So to boil that down: keep trying. There are other things out there. Understand the theory behind why somebody would tell you to do something, and you'll probably get a more satisfying outcome because you'll understand the rationale for why you'd be trying to do something. And you've got to keep up with it, because doing something once a week isn't enough to change your brain.

[42:21] Dr. Linda Bluestein: And are there times that these kinds of therapies are not appropriate or would even be a bad idea?

[42:29] Kaitlin Touza, PhD: I would say chronic pain interventions would not be appropriate for acute pain. Pain psychology is wonderful in acute pain settings and it's helpful for coping with and dealing with that. But sensitization strategies, for example — where you're trying to be able to tolerate more walking or more reading, or reduce migraines associated with bright light — aren't always the thing that you would want somebody dealing with a broken leg to do, because that pain associated with that broken leg is important to listen to. That's not the same thing as chronic pain signals. So we want to do what your body's telling you to do when you're dealing with acute pain.
[43:15] I think it's also challenging if somebody has needs beyond what pain psychology can provide. If somebody's work environment is not safe or is not something that can keep them healthy and well, then that's a social need that pain psychology isn't necessarily going to meet. And we don't want to miss practical tools that could help somebody in a situation like that by having them doing emotion-processing exercises when there might be something environmentally going on that needs to be addressed. If somebody is truly not safe — not safe at home, or not safe with body movement and activity, if there is some danger that needs to be addressed — pain psychology is not the thing that is likely to be helpful.
[44:18] That's not to say pain psychology wouldn't help people who are going through stuff like that. It's just that we don't want it to get in the way. We don't want to get into a situation of "let's meditate through this," when really we need to make sure this is a safe situation first.

[44:30] Dr. Linda Bluestein: Yeah. No, that's really, really helpful. And I love how you brought up confidence. I feel like that is so important. And I know for me personally, I really struggled with confidence — it was really, really tough. And I also stopped doing everything that I love to do, and getting those things back in my life really helped a lot. And I think also, you've mentioned at other times when I've heard you talk about self-compassion and being flexible when it comes to goal setting, and I think that's especially important for people with conditions like Ehlers-Danlos syndromes, hypermobility spectrum disorders, dysautonomia, mast cell activation syndrome — those are the primary audience members for this podcast. How can we foster that self-compassion and flexibility when it comes to goal setting?

[45:20] Kaitlin Touza, PhD: It's so important. Self-compassion is the difference between being the carrot or the stick in how you motivate yourself. And it's connected to self-efficacy. Do you think that you can do something? Do you feel confident in your abilities? Do you feel like even if you don't do something so well, it's okay? Is it okay to struggle? Is it okay to not finish things? Do you have to live up to some rule that isn't workable in your life and isn't benefiting you?
[45:54] Being able to take a step back and say, "This is who I am. This is what I'm able to do, and that's okay. In fact, I'm even appreciative of who I am and I like who I am" — that is a way better motivator for being productive and meeting our goals than saying, "I'm bad and I need to try harder," because that doesn't motivate us. That puts us at a deficit.
[46:18] So thinking about how you motivate yourself and how you talk to yourself matters. If you could take your internal dialogue and put it in someone else and that person talked to you the same way you talk to yourself all day, would you want to hang out with that person? And if the answer is no, that's a problem, because you can't get away from yourself.
[51:44] So think about it this way: if a child makes a mistake, how do you talk to a child? You don't say, "You're bad and you're going to be bad forever. You can't do anything right." You say, "Okay, what can we learn from this? What happened? Why did that happen? What do we want to do next time?" So it's a compassionate problem-solving process versus "I'm bad and I'm always going to be bad." And it is absolutely related to survival as well. Do you think you're going to be okay? Do you have confidence that you're going to be okay today, tomorrow, next year, ten years from now? That's a huge deal related to danger. And self-efficacy and self-confidence have a lot to do with how you would answer those questions.
Self-efficacy is part of our soothing system. So we've been talking about that stress response, but we also have a rest response. We're kind of designed to see the tiger, run away, and feel better. And that "feel better" part is hard to achieve with chronic pain, because the tiger isn't necessarily going away — or at least your nervous system thinks it's not. So we're trying to teach that nervous system that it's not a tiger, it's a kitty cat. You don't have to keep monitoring it. But that soothing system, the flipping of the coin and feeling better after stress — self-compassion and self-efficacy are part of that. Higher self-efficacy, higher pain-related self-efficacy, is associated with reduced psychological distress, improved function, and even less pain severity. So it is absolutely related to this.
Developing self-compassion is hard for a lot of people because we have a tendency to be self-critical and to monitor ourselves in a negative way, which can be motivating if the response to that is, "Yeah, I can do something about that." But if the response is, "I can't cope with this, I can't deal with this," then that feeling of "I'm going to be okay" breaks down.
[51:44] Being flexible in our goal pursuit is part of this too. Rigidity in goal pursuit, perfectionism — "I have to do it this way and it has to be right" — is a very stressful process. If we're flexible instead, if we say, "Okay, this is my long-term goal and every step between here and reaching that long-term goal is troubleshooting," each time I try something and it works, I'm going to say, "Why did it work? What do I need to remember about that so it goes better in the future?" And if it doesn't work, we want to stay away from the F word. We don't want to say "failure" because that's not helpful. In fact, we respond to that word quite strongly — you can just say the word "failure" without any other context and people will start to stress out. We want to say instead, "How do I make this goal more achievable for me at this time? That was not a good goal for me at this time. How do I create a good goal for myself right now?"
[51:44] So it's not about "I need to try harder." It's about "why is it not working? We need to make it easier," because that's the answer to actually being productive in our goal pursuit. And how do you get to the place of saying it's okay to modify this? Self-compassion — saying, "That didn't work, but it's not because I'm bad. It's because that didn't work for some reason. So let me figure out how to make it work for me, and it's okay to do it in a different way. I'm allowed to do it in the way that feels good to me. I'm allowed to do it in the way that causes the least amount of stress for me." Just recognizing that you are the steward of your life and you get to be kind to yourself in both thought and action. It might just take some practice, because it's not instinctual. All of this stuff is hard to do for us humans.

[51:44] Dr. Linda Bluestein: Yeah, it is. And sometimes we get anxious and then we get anxious about being anxious. We blame ourselves for being anxious.

[51:44] Kaitlin Touza, PhD: A big part of what I try to do with people is remove layers of the suffering onion. Our core suffering is usually bad enough — which may be pain or trauma or depression, or we didn't sleep very well last night and we have a lot of stuff to do today. It can be a small everyday suffering or it can be a big life suffering. So we have the center of our onion, and then we feel guilty about having pain, and then we feel anxious about how our pain is impacting other people, and then maybe we start feeling sad about that, and then we're feeling guilty about feeling sad because we're worried it's impacting other people. And it can build and build and build.
[51:44] So that anxiety about the anxiety is a great example, and mindfulness is a really powerful tool for being able to say, "Okay, I'm noticing that I'm anxious about my anxiety. Let me see how that core anxiety feels and what I feel and think about that. And is this something I really need to give myself such a hard time about, or can I think about it more like a learning process?" Mindfulness skills allow us to kind of pull into that, like you described.

[51:53] Dr. Linda Bluestein: Awesome. And I have an acronym that I use for when I'm developing comprehensive treatment plans that I've written about. And if people have already heard me, I'm not going to go into this, but it's MENSPMMS. So it stands for movement, education, nutrition, sleep, psychosocial modalities, medications, and supplements. So of course there's a P in there for psychosocial. It's so great to have this conversation and just dig into this in such detail. And I feel like there are going to be people who will want to listen to this multiple times because this was so rich with information. And before we wrap up and get to the hypermobility hack, was there something that I didn't ask that you think I should have asked?

[52:36] Kaitlin Touza, PhD: Well, this is such a huge topic. It's impossible to cover it all. We could have 20 hours of podcasting and we would still probably not get to all of it. We just kind of tip of the iceberg here.
[52:52] One thing to think about is just to harness the power of your mind. And I know we've talked about that, but I'll give an example of how this might work if you were practicing something like cognitive behavioral therapy, acceptance and commitment therapy, or any of the other ones I mentioned — mindfulness, EAET, PRT. Here's an example of how this might work in real time.
If somebody is doing something and they have a pain increase, and they haven't learned about pain neuroscience or the power of the mind, they're just going to have an instinctual response to that — which is not a moral failing, not something they're doing. They're going to have a thought like: "Something is wrong. Something is broken. I'm going to get worse. I'm not going to be able to do the things I need to do. What about my financial health? What about my family?" And they're going to have a sympathetic nervous system response, a stress response, which the brain is going to read and say, "Yes, we're in danger." So you have the thought, you have the pain, and you have your body response all saying "we're in danger," and that is going to lead to a behavioral response that's likely more avoidance or fear. Even if we don't avoid the activity, we're going to potentially disengage from the things we might have wanted or needed to do in that moment, and we're going to feel bad and guilty and worried.
[54:05] Now, if somebody has gone through some of this education and has practiced some of these skills and has the mindfulness skills to be aware of what's going on inside them, they might have that same pain increase, that same pain flare, but they might say, "Okay, this is annoying, but it is not dangerous. I know that this is a safe thing to do and I know that this pain is not necessarily associated with tissue damage. It's part of my danger warning system that isn't useful in this moment. And I have things I can do that will be helpful here." And that person is going to have an initial stress response in their body — because again, that's very instinctual and very automatic with pain — but they're going to be aware of it, and the way that they think about it is already going to calm down that body response. You don't even have to do anything else other than think about it differently.
But they're also going to know about things like releasing tension and breathing and how that influences what our brain is doing and is incongruent with danger — you're not nice and relaxed when you're fighting a tiger, so it can help your brain to recognize you're okay. And they're going to have a different behavioral response. They may continue to engage in what they want to do, maybe taking some care for themselves to relax a little bit along with it. They might use other management strategies they've found effective and feel confident they'll be effective again. And even if they do rest, even if they do disengage from that activity, they're going to rest feeling confident that they're okay, that it's just — "Oh, silly nervous system. This is really annoying. I'd like you to stop doing this" — versus "There's something wrong and I'm afraid of it." And so kind of thinking about all of the different factors that would contribute to you as an individual being able to say, "That's okay. I don't like that it happened — we're not going to gaslight ourselves — it hurts, but I'm okay. I'm going to be okay. I have ways that I can deal with this and I have a 100% success rate of getting through these moments." That is ultimately what we are trying to get to. All of the different things that an individual might need or benefit from to be able to do that — that's the big picture.

[56:22] Dr. Linda Bluestein: I love that big picture. And we're going to jump into our hypermobility hack. This is how I like to end every episode. Of course you've given us already lots of tips, but do you have a hypermobility hack you can share with us?

[56:36] Kaitlin Touza, PhD: This is a hypermobility hack, but I also think it's a general wellbeing hack for anyone. Find something that is meaningful to you to do when you need to rest. One of the things that I hear so much from people with hypermobility — and this could be true for anyone, but I hear it a lot from the hypermobile folks — is that there is such a vibrant zest for life and activity and interest and engagement, and having to limit activity or take time away from activity is emotionally painful and distressing. And we want to find something that is meaningful and important and worthwhile to do when we can't do our highly active things, because we don't want our downtime to just be blank spaces in our life while we're waiting to feel better.
[57:27] During that period of time, we are anxious that it's never going to get better, that we're always going to feel that way, and it's fearful and difficult. And then when we do feel better, we're waiting for it to happen again. When is it going to happen again? How long is it going to take? Am I going to be the one who never gets better from it?
[57:43] And so if we can shift that a little bit and think about it like, "Okay, I have this downtime period, which is annoying but not dangerous, and it's something that I anticipate I might have at periods of time in my life. I don't like it and I don't want it to happen again." We can't necessarily prevent it from happening, but we can think about how we don't want to experience it the same way again. And often when we're anxious about something, that's really what we mean — I don't want it to feel the same way again when it happens. I don't want the same outcome when it happens. And that's something we can think about changing. We often can't prevent something from happening, but we can change our experience of it, or think about how we could change our experience of it and do something different. So find something that is meaningful and interesting and worthwhile for that downtime, so it is not just being stuck in the waiting room of life feeling anxious and upset about it.

[58:36] Dr. Linda Bluestein: I love that. That's really fantastic. And before we go, I just want to thank you so much, Dr. Touza, for coming on and sharing all this fabulous and really, really important information with us. And I just want to know — are you working on any special projects, any research or anything? And is there a place that people could find more about what you're doing and/or more information about this topic in general?

[59:07] Kaitlin Touza, PhD: My passion is really in clinical work and program development, so that's what I'm spending my time on. And the program development is probably the thing that's more interesting to other people. I am trying to get education about this out there to healthcare providers and people in the community — families and the people who are dealing with chronic pain. So things like webinars and learning communities — those types of things are coming up.
[59:33] I am part of a teleconferencing program called TelePain that the University of Washington hosts, which is all about educating especially primary care and family medicine providers about the management of chronic pain. People hear from a panel of experts giving opinions on different aspects of pain management, including a couple from me about pain psychology. And that's something people can join and listen to and sometimes get some consultation on.
[1:00:00] On the research side, that's not something that is as active in my personal wheelhouse right now. But with colleagues, we are always looking for ways to get this information to people — to reach the most people and also get that information out to rural areas of the state. And the research we would be doing would be to see if it's working — does this stuff actually help people to learn, is it helping patients get the information that they need, that kind of thing.
If you want to know more about what I'm doing, you can look me up — I'm a very easy person to Google, my name is pretty unique. But also, looking into what the University of Washington is doing and what webinars its affiliated organizations are engaged in. That would be the way.

[1:00:59] Dr. Linda Bluestein: Okay, great. And of course you and I met through UW TelePain, and I heard you give a lecture, and I was like, oh my gosh, this information has to be shared with my listeners because it's so, so important. And I know how much it helped me to learn about these kinds of things when I was really, really struggling a number of years ago in my own life. And the UW TelePain program — is that something that's open to patients and clinicians? Because I know some people are going to say, "Oh, that sounds really great." Can you explain a bit about that?

[1:01:32] Kaitlin Touza, PhD: Yeah, that is geared toward physicians and providers. I should have mentioned that. It's something that a patient would probably not find particularly useful because it's going to get into some of the minutia of things that are not relevant to treatment. It's more to help the provider side of things. But the reason why I mentioned it is because the more we educate providers, the more that trickles down to patients getting good pain care.

[1:01:56] Dr. Linda Bluestein: Yeah.

[1:01:58] Kaitlin Touza, PhD: If patients are looking for resources, there's more and more stuff out there on the internet. There are different organizations creating resources for patients. And so if you start Googling self-help for chronic pain, you're going to get some different resources that are useful. There are many self-help manuals that I love and think are great. So the information is out there, and however you want to learn, you can find it. You can find videos on YouTube if you prefer that. There are manuals and books if you prefer to read. And then just keeping your eye out there for things like this podcast. There's a huge amount of education on this podcast and other podcasts about chronic pain and health. So there are lots of ways to learn. You just have to search for it a little bit.

[1:02:46] Dr. Linda Bluestein: And the audience is fascinating because there are physicians who listen to this podcast, physical therapists, nurse practitioners, physician assistants, psychologists, and patients and caregivers. So the community is really diverse. That's really great. Dr. Touza, thank you again so very much. This was such a great conversation, and I know that people will benefit from hearing everything you had to share so, so very much.

[1:03:19] Kaitlin Touza, PhD: Thank you for having me. It's been truly my pleasure. It is my passion to get this info out there and to help people connect with this stuff. So truly my pleasure.

[1:03:31] Dr. Linda Bluestein: Well, that was such a great conversation with Dr. Touza. I hope you enjoyed it as much as I did. I really feel like this information is so, so important, and it is important to use in the context of everything else that you're doing for your pain. So again, that acronym that I use — P is one of those letters — and it should be part of, I think, everyone's comprehensive treatment plan when it comes to addressing chronic pain.
[1:03:51] I just want to thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast. You can help us spread the word about hypermobility and related disorders by leaving us a review and following the podcast. This helps to really raise awareness about these complex conditions. And you can follow me, Dr. Linda Bluestein, on many different social media platforms. I'm really active on Instagram. I'm also on Facebook, LinkedIn, and X. You can also find Human Content, my producing team, @humancontentpods on TikTok and Instagram. And you can also find full video episodes up every week on YouTube at Bendy Bodies Podcast. To learn about the Bendy Bodies program disclaimer and ethics policy, submission verification and licensing terms, and HIPAA release terms, or to leave us a question, please visit bendybodyspodcast.com. Bendy Bodies Podcast is a Human Content production. Thank you for being a part of our community, and we'll see you next time on the Bendy Bodies Podcast.