24. Thriving with Chronic Pain with Beth Darnall, PhD

Episodes have been transcribed to improve the accessibility of this information. Our best attempts have been made to ensure accuracy,  however, if you discover a possible error please notify us at info@bendybodies.org

00:00:00 

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. Our very special guest today is Beth Darnell PhD, director of the  Stanford pain relief innovations lab.  

00:00:48 

Linda Bluestein 

She leads NIH and PICORI funded clinical trials that broadly investigate behavioral medicine for acute and  chronic pain, including a $9 million multi-state trial on voluntary patient centered prescription opioid reduction.  Dr. Darnell his 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. Empowered relief is available in  English, French, and Spanish and exists in healthcare systems in the U S 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, 

00:02:04 

Linda Bluestein 

Dr. Darnall, hello, and welcome to the bendy bodies podcast.  

00:02:08 

Beth Darnall 

Thank you. It's really a pleasure to be here.  

00:02:10 

Linda Bluestein 

Great. And it's great to see you, Jen. Yes. Good to see you as always. All right. Very good. So Dr. Darnell our  podcast is for people living on the hypermobility spectrum, many of whom live with daily pain. 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.  

00:02:36 

Beth Darnall 

Yeah, well, great questions to kick it off. I, I was recently asked, what was missing in terms of how we're  addressing chronic pain clinically and also in our research. 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. 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. The extent to which we appreciate that pain is a whole person experience with broad comprehensive  targets.  

00:03:54 

Beth Darnall 

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 needs, the specific needs of that person. 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, treating it better.  

00:04:28 

Linda Bluestein  

Sure. 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 is we're struggling with a  lot of things, especially right now with COVID still going on. Sometimes people don't really know where to  start. When you talk about a multidimensional assessment, can you go into more detail about why that's so  necessary in diagnosing and treating chronic pain?  

00:04:56 

Beth Darnall 

Yeah, absolutely. 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? What are they working? What's the stress level in  the home? what's a daily, level of activity. How is nutrition? What are financial stresses for instance? And so  with that information of 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 is an example, is it 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? So, yeah, it's, people living with chronic pain will understand this cycle.  

00:06:17 

Beth Darnall 

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. 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. We can quickly  get into these automatic cycles that become self-reinforcing. 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.  The more that we dive in and understand what's happening with each individual, we can then identify  opportunities. Okay. A person is not sleeping well, what can we do to help that person improve their sleep? So,  for instance, in some cases, cognitive behavioral therapy for insomnia, that's a first-line treatment for sleep  problems, but that might not be well appreciated.  

00:07:49 

Beth Darnall 

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. In order to S to, connect with that, we have to source that information and  know how to get this specific type of treatment. All of this to say, if we don't do that multidimensional  assessment, we won't know what therapeutic target is. We will be failing to connect the person with the  information that they needed, about how to help themselves sleep better. I'm, I, my background is I'm a pain  psychologist as a clinician, even though I largely do, I do research at this stage, but for 15 years, focusing 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.  

00:09:06 

Beth Darnall 

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.  

00:09:21 

Linda Bluestein 

Absolutely. That makes a lot of sense. I know when I often mentioned those kinds of things with people, there's  a lot of, there's so much stigma surrounding chronic pain, right? So that is one of the really challenging things. I  try to explain that there's 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. With people that have hyper-mobility disorders too, they can often have, multiple different causes  of pain in their body. They might have chronic pain, but then have kind of acute on chronic, if they have a  dislocation or subluxation or something like that, for people that have, 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?  

00:10:23 

Beth Darnall 

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 bio-psycho-social 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, this there's always challenges in various areas of the country.  It's hard to bring together all of these experts. The extent to which one can, is obviously advantageous. That  maybe in your area, you're not able to necessarily work with a local psychologist who is skilled in pain  management. If your physician understands the bio-psycho-social 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,  and there are many different ways access information about, how to best move with, hypermobility.  

00:12:00 

Beth Darnall 

How does one exercise when, certain exercises can actually cause pain or a flare of pain, and so 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 that, the physical therapy or the movement perspective, you want to have the, a behavioral or a  psychology perspective. Another way to talk about it is the a 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. My response to that over and over again, universally is  yes, you have a medical problem. 

00:13:14 

Beth Darnall 

There are things you can do to help yourself that this is vitally important to help you achieve your best quality of  life within the context of a complex medical condition. 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 nice opportunity to learn what you can do to help yourself because the truth is living with  chronic pain and living with medical conditions. It 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 that we might've had with ourselves, or can be a loss in roles that we had within the context of social  relationships. How do we navigate all of this and their support for this? That's the most important thing to know  is that the profession of psychology or behavioral medicine or self-management, it's really about empowering  people to, be able to make best choices, and to have best support to navigate some of these challenging  circumstances.  

00:14:49 

Beth Darnall 

I'm so glad you touched on that because I have several clients with EDS or someplace 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 understand what you're saying. Like I don't see anything. You must be fine. 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're in pain? So, but it is so  important to find support for that site, for the psychological piece as well. Like you said, the medical, the  psychological, the movement pieces all fit together. So I really appreciate that. 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.  

00:15:45 

Jennifer Milner 

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. 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?  

00:16:22 

Beth Darnall 

Boy, it's a great question, Jennifer. I just want to say, we go to our doctors and, we get treatment and we may  even get prescriptions. Those treatments and those, medical visits just happen very sporadically. It's what we do  in the day-to-day, it's all of our daily choices influence everything, how much pain we feel or how well we're  going to sleep. Just to roll with that sleep, kind of 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. If I start taking a look at  what I'm doing, and this is an actual example, if I start taking a look at what I'm doing, 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.  

00:17:22 

Beth Darnall 

I may have had an, a drink of alcohol and, there's a common perception that alcohol can aid sleep because it's  associated with sedation and feeling drowsy. In fact, when alcohol is metabolized, it actually, as it's 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 a poor quality of sleep  because you will not achieve those deeper stages of sleep. That's just one example for instance, of things that  one can do is putting each factor under the microscope. So we put all of our, you know, the lead up to sleep time  under the microscope and look for the opportunities. What can I change? So I'm gonna turn off my computer  and my phone and 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. Other things that people can do who have chronic pain, taking a look at,  our stress levels and our 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's a protective reaction to pain. More, we're just hardwired for this. When we have pain ongoingly, it becomes, more  of a neuromuscular pattern where we're storing tension in our bodies. The reason why this is problematic is  because when we have that stored tension, it, actually contributes to us being more sensitive to pain and also  being more reactive to pain once it occurs.  

00:19:38 

Beth Darnall 

What that would mean, I'll just kind of break it down simply is that we might, be more, sensitive to having a  pain flare and then for having greater reactions to it when it occurs. This is just an opportunity for us to begin  identifying how much tension and stress do we carry in our body and to apply various tools so that we can  down-regulate that so that we can start working with mind and body to introduce deeper States of relaxation.  The reason for that is that relaxation, scientifically proven to reduce pain processing in the central nervous  system in real time. 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. This this is a type of skill and strategy that, of  course isn't going to cure one's medical condition, but what it can do is both reduce pain-related distress and reduce for some people actual pain intensity over time.  

00:20:58 

Beth Darnall 

That one can live better with this medical clinic.  

00:21:03 

Jennifer Milner 

That's so I think it'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  and really looking at the long-term program of it, rather than just trying to keep putting on band-aids is what it  sounds like you're saying it's making a huge paradigm shift to that long-term focus.  

00:21:33 

Beth Darnall 

I think, you stated it really nicely, Jennifer is that I think, a lot of times people, this is a human tendency, is that  we'll think, well, I, my pain is really severe. What should I do? Oh, there was some relaxation technique. Maybe  I'll try that. 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 skillset on a daily basis on a regular basis, that's when we start  reaping the rewards. And this is really extremely under appreciated. 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.  

00:22:42 

Beth Darnall 

When that investment is made over the course of a few months, we see that people gain benefits. It makes sense  if we think about it, like 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. That's probably my biggest hurdle as a  psychologist is helping people understand that it does take several weeks to rewire the nervous system and to  help people stay on track, not to focus on what's happening just right there in the moment, and then judging  whether it's effective or not right there in the moment. I can give you an example of that. I don't want to take all  of our time, but I could share the results of a scientific study if you're interested in hearing about that. There  was, a study conducted, by some researchers where they wanted to understand how does cognitive behavioral  therapy change the central nervous system.  

00:24:00 

Beth Darnall 

We know that it's beneficial for chronic pain of many different types, but they're really wanted to quantify how  does this change what's happening in the central nervous system? And so 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. What cognitive behavioral therapy is  it's, people will, would come to a class once a week for 11 weeks. This is usually one to two hours in duration,  and a lot of different information and skills are learned in each class. We would burn the information such as  relaxation, or to identify how they're thinking and feeling within the context of pain and working to calm their  nervous system and receiving this information and applying these scales over the course of weeks. So here's  what the researchers found. 

00:25:03 

Beth Darnall 

They found that baseline people with chronic pain, evidenced volumetric deficits, and the regions of the brain  associated with pain control. This has been found by multiple researchers of different, pain conditions. What  was interesting was that 11 weeks later after people received this treatment were using these skills over the  course of 11 weeks. They found substantial, volume metric increases in those same regions of the brain  associated with pain control. People literally were altering the structure of the brain favorably within three  months time, and that 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 results, 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 be able to identify when they were having kind of a  negative thoughts or a negative mindset, and to be able to self-soothe in the moment.  

00:26:30 

Beth Darnall 

This is important because if we get into patterns of distress, that is unwittingly, not just increasing our distress,  but it amplifies pain processing. 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.  

00:27:00 

Jennifer Milner 

That that's so interesting. I know that you have, the book out, but I know you've also created the program  empowered relief. How can people access that program? And can you tell us about it?  

00:27:14 

Beth Darnall 

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, look, 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. I  developed a single session class so that a hundred people can be treated at once and family members can be  included. It's it's a class, so it's not group therapy. 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. Because of COVID now we're delivering these classes online.  Empowered relief is available at Stanford university.  

00:28:31 

Beth Darnall 

It's available in many healthcare organizations across the United States. It's available in five countries in three  languages. Now what we don't have is just an online version where anyone in the United States can dial into  empowered relief. We're actually working on that and that may happen, in the next year. For right now, people  don't have the ability to just hit a link and get into empowered relief. They need to find a provider in their  community as certified empowered relief provider. On the empowered relief website, it's empowered relief.com.  People can go to find a provider, look in their country in their state and see if there's a local certified provider  where they can get the single session class. We also have some, active studies at Stanford university. If  someone's interested in actually joining one of our studies, that's another way that they may be able to get access  to it.  

00:29:34 

Beth Darnall 

As a final backup, people can get the information in print form. You you mentioned the book, the opioid free  pain relief kit. So, so that's actually kind of a, a compressed print form of the information that people would  access in the empowered relief class. It's just, it's different ways to access the information, but that's a nice way  that people can get it right away. 

00:30:05 

Jennifer Milner 

That's excellent. There anything else that you wanted to share about where people can find out about the work  that you were 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?  

00:30:20 

Beth Darnall 

Oh, thank you for that opportunity. I do have a website. It's Beth, darnell.com. I also have a lab website at  Stanford university. I can give you that link, which talks about some of our studies. I, I'm pretty accessible on  Twitter as well, for anyone who has social media. 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.  Excellent.  

00:30:53 

Jennifer Milner 

Was there anything you wanted to add for today?  

00:30:55 

Beth Darnall 

Well, I just want to thank you so much for having me on your greatest show and for, featuring this behavioral  perspective, to your audience. Thanks for the opportunity and keep up the great work.  

00:31:09 

Jennifer Milner 

Thank you. You have been listening to bendy bodies with the hypermobility MD today. We've been speaking  with Dr. Beth Darnell director of the Stanford pain relief innovation labs. We are so grateful Dr. Beth Darnell  for you taking the time to come on the bendy bodies podcast and sharing your expertise with us today. Thank  you so much.  

00:31:28 

Linda Bluestein 

Thank you for joining us for this episode of bendy bodies with 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 at  associated conditions. Visit our website, 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 at bendy underscore bodies and on Facebook at Vandy bodies podcast. The thoughts and opinions expressed on this podcast are solely of the co-hosts and their guests.  

00:32:30 

Linda Bluestein  

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.