Thriving with Chronic Pain with Beth Darnall, PhD

[00:36] Dr. Linda Bluestein: Hello and welcome to Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility for dancers and other artistic athletes. This is Dr. Linda Bluestein here with co-host Jennifer Milner. We have a very special guest to introduce to you today, but we would first like to remind you about how you can help us help you. First, subscribe to the Bendy Bodies Podcast and leave us a review. This is helpful for raising awareness about hypermobility and associated disorders. Second, share the Bendy Bodies Podcast with your friends, family, and providers. We really appreciate you helping us grow our audience in order to make a meaningful difference. This podcast is for you.
[01:12] Our very special guest today is Beth Darnall, PhD, Director of the Stanford Pain Relief Innovations Lab. She leads NIH and PCORI-funded clinical trials that broadly investigate behavioral medicine for acute and chronic pain, including a $9 million multistate trial on voluntary patient-centered prescription opioid reduction. Dr. Darnall's primary interests are developing and investigating novel pain treatments that are scalable, effective, and low burden. She and her team lead international workshops to train clinicians to deliver the single-session evidence-based pain relief skills class called Empowered Relief.
[01:53] Empowered Relief is available in English, French, and Spanish and exists in healthcare systems in the US and in Australia, the UK, Denmark, and Canada, and is the subject of international research. The broad goal of this collective line of research is to dismantle barriers to effective behavioral medicine for pain and health. Dr. Darnall's work has been featured in outlets such as Scientific American, NPR Radio, BBC Radio, and Nature. In 2018, she spoke on the psychology of pain relief at the World Economic Forum in Davos, Switzerland.
Dr. Darnall, hello and welcome to the Bendy Bodies Podcast. Thank you.

[02:44] Beth Darnall, PhD: It's really a pleasure to be here.

[02:46] Dr. Linda Bluestein: Great, and it's great to see you, Jen.

[02:48] Jennifer Milner: Yes, good to see you as always.

[02:50] Dr. Linda Bluestein: All right, very good. So, Dr. Darnall, our podcast is for people living on the hypermobility spectrum, many of whom live with daily pain. So we want to jump right in and ask why the problem of chronic pain has not been solved yet and what needs to happen in order for people to have less pain.

[03:12] Beth Darnall, PhD: Yeah, well, great questions to kick it off. I was recently asked what was missing in terms of how we're addressing chronic pain clinically and also in our research. And I think that there's some big, broad opportunities. We have not been studying pain comprehensively. And so that really needs to change so that we're not just investigating and treating pain from a biomedical perspective, but we are appreciating that it is a whole-person experience. And what I mean by that is that even though pain has a medical basis, it's profoundly influenced by a whole host of factors. It's influenced by everything that's happening in our lives and our environment and our thoughts and our emotions and our stress levels and whether or not we're sleeping well or able to engage in activity.
[04:20] So the extent to which we appreciate that pain is a whole-person experience with broad comprehensive targets, we can then begin characterizing the needs and the opportunities within each individual and the opportunity to treat pain better by delivering targeted treatments that address the specific needs of that person. So I think that's the most exciting thing. It's a real opportunity to think about pain more broadly, more comprehensively, so that we're addressing it and treating it better.

[05:03] Dr. Linda Bluestein: Sure. And I know that a lot of times when people are going to the doctor with chronic pain, they might have a difficult time even getting an accurate diagnosis. We know that healthcare right now — we're struggling with a lot of things, especially with COVID still going on. And sometimes people don't really know where to start. When you talk about multidimensional assessment, can you go into a little bit more detail about why that's so necessary in diagnosing and treating chronic pain?

[05:31] Beth Darnall, PhD: Yeah, absolutely. So in a perfect world, with each person, we're really characterizing every domain of their life, and then we can examine pain within that context so that we can understand: what is a person's mood? Do they have anxiety? How is their sleep quality? Are they in a relationship? Are they working? What's the stress level in the home? What's their daily level of activity? How is nutrition? What are their financial stresses?
[06:15] And so with that information — understanding a whole person's life — we can better understand the experience of their pain within that context, and then address those factors. I'll just give you one nugget as an example: one of the best predictors of a person's pain on any given day is the quality of the sleep that they achieved the night before. People living with chronic pain will understand this cycle. If we have a poor night's sleep, we're more sensitive to pain the next day. Pain has a greater impact. We're also likely to have more fatigue, and when we're fatigued, we're less likely to engage in movement or exercise. As we move less, that impacts our mood, and it also contributes to us having poor sleep that next night. And so we can quickly get into these automatic cycles that become self-reinforcing — and it's not because we want more pain, and it's not because we asked for more pain, and it's not because we're doing anything wrong. This happens naturally and automatically within the context of how pain operates biologically and physiologically and psychologically.
[07:50] So the more that we dive in and understand what's happening with each individual, we can then identify opportunities. Okay, so a person is not sleeping well — what can we do to help that person improve their sleep? In some cases, cognitive behavioral therapy for insomnia is a first-line treatment for sleep problems, but that might not be well appreciated. People might think more about taking a medication for sleep when in fact there are things that we can do ourselves to help us sleep better. But in order to connect with that, we have to source that information and know how to get this specific type of treatment.
[08:43] And so all of this to say, if we don't do that multidimensional assessment, we won't know what the therapeutic target is, and then we will be failing to connect the person with the information they needed about how to help themselves sleep better. My background is as a pain psychologist — as a clinician, even though I largely do research at this stage — but for 15 years I focused on treating chronic pain using behavioral treatments that fundamentally focus on providing patients with education, skills-based, actionable information so that people can learn how to best help themselves. Not to the exclusion of medical treatments, but so that maybe we need fewer medical treatments and so that when medical treatments are tried, they're more likely to work better, because as the patient, we're doing everything we can to help ourselves and to get our health on track.

[09:57] Dr. Linda Bluestein: Absolutely. That makes a lot of sense. I know when I often mention those kinds of things with people, there's so much stigma surrounding chronic pain, right? That is one of the really challenging things. And I try to explain that there are so many variables involved. It's not as simple as just taking a single pill that's going to take away all your pain. We haven't found the magic pill yet because there isn't one — because it's so multifactorial. So with people that have hypermobility disorders too, they can often have multiple different causes of pain in their body. They might have chronic pain but then have acute-on-chronic if they have a dislocation or subluxation or something like that. For people that are living in pain, do you have any suggestions of some of the best ways that their pain can be treated, besides that excellent example about the sleep?

[10:58] Beth Darnall, PhD: Yes. Some low-hanging fruit is: get a great evaluation, have a great medical team in place — ideally a medical team that brings this comprehensive perspective of a biopsychosocial approach. Treating pain well and living well within the context of complex medical conditions really requires having a healthcare team where different perspectives and approaches are integrated. Now, there are always challenges in various areas of the country. It's hard to bring together all of these experts, but the extent to which one can is obviously advantageous. So maybe in your area, you're not able to necessarily work with a local psychologist who is skilled in pain management, but if your physician understands the biopsychosocial perspective, they may be able to bring forward to you resources, whether those are in print or whether those are online classes, digital support groups.
[12:26] And there are many different ways to access information about how to best move with hypermobility — how does one exercise when certain exercises can actually cause pain or flare pain? Understanding the limitations of the specific disorder or condition, but still being able to do what you can within the context of that problem. Similarly, from the behavioral perspective: you want to have a great medical perspective, you want to have the physical therapy or the movement perspective, you want to have the behavioral or psychology perspective. Another way to talk about it is the self-management perspective. I kind of put all of this in a bucket because sometimes people don't just feel stigmatized about pain, they feel stigmatized about psychology — "You're telling me to go see a psychologist? I have a medical condition. Why are you telling me to do this? This is not in my head. I have a real problem."
[13:42] And my response to that, universally, is: yes, you have a medical problem, and there are things you can do to help yourself. This is vitally important to help you achieve your best quality of life within the context of a complex medical condition. And that's what the behavioral perspective is all about. It's not about blaming. It's not about judging. It's not about saying things are all in your head. It's about recognizing that there's a very real opportunity to learn what you can do to help yourself — because the truth is, living with chronic pain and living with medical conditions changes our lives. It can prevent us from doing the things that we love. There can be losses in terms of social connections, professional connections, even a loss of identity. There can be a loss of roles that we had within the context of social relationships. How do we navigate all of this?
[14:58] And there's support for this. That's the most important thing to know. The profession of psychology, or behavioral medicine, or self-management — it's really about empowering people to be able to make the best choices and to have the best support to navigate some of these challenging circumstances.

[15:25] Jennifer Milner: I'm so glad you touched on that, because I have several clients with EDS or somewhere along the spectrum, and a frustration for them has often been going to doctors and having the doctors say, "Oh, the pain is in your head. I don't see anything — you must be fine." So approaching the psychological portion and saying, "Hey, have you found someone to talk to?" can often make them feel like you're saying, "Have you found someone to fix the voices in your head that are telling you you're in pain?" So it is so important to find support for the psychological piece as well. Like you said, the medical, the psychological, the movement pieces all fit together. I really appreciate that.
[16:08] And I know that's been some of the work that you have done that I want to get to now. In your book, The Opioid-Free Pain Relief Kit: 10 Simple Steps to Ease Your Pain, there's a description that says, "People who think pills are the only answer are mistaken because the best treatment for chronic pain includes much more than pills. In fact, the most important part of pain treatment is not your medication or even your doctor — it is you. And this book gives you the right roadmap and skills to help you reduce your own pain so you need less medication. It's a formula for success, your own personal pain relief kit." I love this. I would buy that book right there just based on that description. I feel empowered already.
[16:49] So what are some things that people with chronic pain are doing that might be hindering their own progress, and what things should they be doing instead?

[16:58] Beth Darnall, PhD: Boy, it's a great question, Jennifer. And I just want to say — we go to our doctors and we get treatment and we may even get prescriptions. But those treatments and those medical visits just happen very sporadically. It's what we do in the day to day. All of our daily choices influence everything: how much pain we feel, how well we're going to sleep. So just to roll with that sleep example and metaphor — I may have poor sleep and I may just be focusing on the fact that I'm not sleeping well and I need some intervention for that. But if I start taking a look at what I'm doing — and this is an actual example — it's like, "Oh, well, I'm on the computer late. I'm getting a lot of bright light. I'm also maybe eating later in the evening. I may have had a drink of alcohol."
[18:05] There's a common perception that alcohol can aid sleep because it's associated with sedation and feeling drowsy. But in fact, as alcohol is being metabolized, it creates a sense of alertness within the body. That's one of the reasons why people who drink alcohol have disrupted sleep. You may get to sleep quicker, but you're going to have poor quality of sleep because you will not achieve those deeper stages of sleep. So that's just one example of putting each factor under the microscope. We put all of the lead-up to sleep time under the microscope and look for the opportunities. What can I change? So I'm going to turn off my computer and my phone an hour before sleep. I'm going to avoid alcohol and not drink it at night, and maybe bump my meal time earlier in the evening.
[19:12] Other things that people with chronic pain can do: take a look at your stress levels and tension levels. It's very common when we have chronic pain to carry quite a bit of tension in our bodies. In part, that is because the human body is designed to react to pain by bracing against it — it's a protective reaction. We're just hardwired for this. And then when we have pain ongoing, it becomes more of a neuromuscular pattern where we're storing tension in our bodies. The reason why this is problematic is because that stored tension actually contributes to us being more sensitive to pain and also being more reactive to pain once it occurs. So what that means, breaking it down simply, is that we might be more sensitive to having a pain flare and to having greater reactions to it when it occurs.
[20:27] So this is just an opportunity for us to begin identifying how much tension and stress we carry in our body and to apply various tools so that we can downregulate that — so that we can start working with mind and body to introduce deeper states of relaxation. And the reason for that is that relaxation is scientifically proven to reduce pain processing in the central nervous system in real time. And then when we have deeper states of relaxation — which means less tension, less stress in our muscles and in our body — that leads to reduced pain over time.
[21:15] This type of skill and strategy isn't going to cure one's medical condition, but what it can do is both reduce pain-related distress and, for some people, reduce actual pain intensity over time so that one can live better with this medical condition.

[21:39] Jennifer Milner: That's so important — that paradigm shift of rather than thinking, "I have a headache, what can I do to make the headache stop hurting now?" to going to, "What has caused this, and what long-term changes can I make?" Really looking at the long-term program of it rather than just trying to keep putting on Band-Aids — that's what it sounds like you're saying. Making that paradigm shift to a long-term focus.

[22:08] Beth Darnall, PhD: I think you stated it really nicely, Jennifer. A lot of times people — and this is a human tendency — will think, "Well, my pain is really severe, what should I do? Oh, there was some relaxation technique, maybe I'll try that." And it may or may not work in the moment when we're truly suffering. It is a shift in mindset towards more of prevention and overall wellness. Any one strategy may or may not work in the moment, but when we start investing time and energy into applying a skill set on a daily basis, on a regular basis, that's when we start reaping the rewards.
[22:58] And this is really and truly underappreciated. It doesn't require a whole lot of time, but what the research shows is that we do need to dedicate a bit of time each day to using these types of skills — say 15 to 20 minutes a day. And when that investment is made, over the course of a few months, we see that people gain benefits. And it makes sense if we think about it — we didn't acquire all of this tension and stress overnight. These neuromuscular patterns develop over time and they similarly take some time to de-pattern. And so that's probably my biggest hurdle as a psychologist: helping people understand that it does take several weeks to rewire the nervous system, and helping people stay on track — not to focus on what's happening right there in the moment and then judging whether it's effective or not right there in the moment.
[24:12] I can give you an example of that. I could share the results of a scientific study if you're interested in hearing about it. So there was a study conducted by some researchers where they wanted to understand how does cognitive behavioral therapy change the central nervous system. We know that it's beneficial for chronic pain of many different types, but they really wanted to quantify how this changes what's happening in the central nervous system. These researchers were studying people with chronic low back pain, and they scanned their brains before they received 11 weeks of cognitive behavioral therapy, and then they scanned their brains post-treatment 11 weeks later.
[27:56] Cognitive behavioral therapy in this case meant people would come to a class once a week for 11 weeks — usually 1 to 2 hours in duration — and a lot of different information and skills are learned in each class. So people would learn things such as relaxation, or how to identify how they're thinking and feeling within the context of pain and how to work to calm their nervous system. And in receiving this information and applying these skills over the course of weeks, here's what the researchers found: at baseline, people with chronic pain evidenced volumetric deficits in the regions of the brain associated with pain control. This has been found by multiple researchers across different pain conditions. But what was interesting was that 11 weeks later, after people received this treatment and were using these skills over the course of 11 weeks, they found substantial volumetric increases in those same regions of the brain associated with pain control. So people were literally altering the structure of their brain favorably within 3 months' time.
[27:56] And they didn't just see these changes on the scans — it correlated with the participants' report of having less pain. What was most interesting to me is that these brain changes were entirely mediated by people reporting that they were having less distressing thoughts about pain. They were focusing less on their pain. They learned strategies and techniques to identify when they were having negative thoughts or a negative mindset and to be able to self-regulate and soothe in the moment. This is important because if we get into patterns of distress, that unwittingly not only increases our distress but amplifies pain processing. So learning these techniques to dampen pain processing in the moment and then applying those techniques over the course of weeks — that's what gets people lasting results. That's what literally changes the structure of the nervous system over time, but it takes a few months.

[27:56] Jennifer Milner: That's so interesting. And I know you have the book out, but I know you've also created the program Empowered Relief. So how can people access that program, and can you tell us a little bit about it?

[27:56] Beth Darnall, PhD: Yeah. Recognizing that people don't have access to 11 weeks of cognitive behavioral therapy, I developed a very compressed single-session class that rapidly equips patients with actionable pain management skills that are included in the study that I just mentioned. What I recognized was that we know what works — we just aren't delivering it in a format that's accessible at a population level, and this is what needs to change. So I developed a single-session class so that 100 people can be treated at once and family members can be included. It's a class, not group therapy. And for that reason — because it's education and skills based — people are generally receptive to just coming to a class and learning about it. They don't even have to share information about themselves if they don't want to.
[28:56] Because of COVID, we're now delivering these classes online. Empowered Relief is available at Stanford University. It's available in many healthcare organizations across the United States. It's available in 5 countries and 3 languages now. What we don't have yet is just an open online version where anyone in the United States can dial in to Empowered Relief. We're actually working on that, and that may happen in the next year, but for right now, people need to find a provider in their community — a certified Empowered Relief provider. On the Empowered Relief website, empoweredrelief.com, people can go to "Find a Provider," look in their country and their state, and see if there's a local certified provider where they can get the single-session class.
[29:58] We also have some active studies at Stanford University, so if someone's interested in actually joining one of our studies, that's another way they may be able to get access to it. And as a final backup, people can get the information in print form. You mentioned the book, The Opioid-Free Pain Relief Kit — that's actually a compressed print form of the information that people would access in the Empowered Relief class. It's a nice way that people can get it right away.

[30:35] Jennifer Milner: That's excellent. Is there anything else that you wanted to share about where people can find out about the work that you are doing, how they can find you on the internet? We will post all of your links and everything as well with the podcast. But what would you like to share about that?

[30:55] Beth Darnall, PhD: Oh, thank you for that opportunity. I do have a website — it's bethdarnall.com. I also have a lab website at Stanford University. I can give you that link, which talks about some of our studies. I'm pretty accessible on Twitter as well for anyone who has social media. So hopefully with all of these resources, people can find out about what we're doing and also have a way to reach out with any questions if they'd like to ask me directly.

[31:28] Jennifer Milner: Excellent. Was there anything you wanted to add for today?

[31:31] Beth Darnall, PhD: Well, I just want to thank you so much for having me on your great show and for featuring this behavioral perspective to your audience. Thanks for the opportunity, and keep up the great work.

[31:45] Jennifer Milner: Thank you. And you have been listening to Bendy Bodies with the Hypermobility MD. Today we've been speaking with Dr. Beth Darnall, Director of the Stanford Pain Relief Innovations Lab. We are so grateful, Dr. Darnall, for you taking the time to come on the Bendy Bodies Podcast and sharing your expertise with us today. Thank you so much.

[32:01] Dr. Linda Bluestein: Thank you for joining us for this episode of Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility for dancers and other artistic athletes. Please leave us a review on your favorite podcast player. Remember to subscribe so you won't miss future episodes. Be sure to subscribe to the Bendy Bodies YouTube channel as well. Thank you for helping us spread the word about hypermobility and associated conditions.
Visit our website at www.bendybodies.org for more information. For a limited time, you could win an autographed copy of the popular textbook Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders just by sharing what you love about the Bendy Bodies Podcast. On Instagram, tag us @bendy_bodies and on Facebook at Bendy Bodies Podcast.
[32:50] The thoughts and opinions expressed on this podcast are solely of the co-hosts and their guests. They do not necessarily represent the views and opinions of any organization. The thoughts and opinions do not constitute medical advice and should not be used in any legal capacity whatsoever. This podcast is intended for general education only and does not constitute medical advice. Your own individual situation may vary. Do not make any changes without first seeking your own individual care from your physician. We'll catch you next time on the Bendy Bodies Podcast.