help chronic pain patients learn a new set of tools
season 2 Episode 3: Treating Chronic pain
For years doctors have used opioid painkillers as the go-to solution for all kinds of pain. Now that U.S. society is saturated with these pills and so many people are dying of overdoses, medical consensus and even laws are changing. Doctors are getting the message to cut back. But some patients with chronic pain say they’re being cut off – all of a sudden – from the medicine they depend on.
So what’s the solution? What is the appropriate role of opioids? Answering that question means we have to re-examine what we *think* we know about chronic pain.
On this episode we zoom out and get a more complete picture of chronic pain, so we can understand where opioids fit in.
We find out about one solution that helps people feel better while voluntarily scaling back on opioids. Doctors, nurses, and therapists are working to give their patients with chronic pain a whole new set of tools.
LINKS TO MORE INFORMATION AND RESOURCES:
If you want help finding local drug treatment, support groups, or organizations in your community for yourself or someone else, you can call 1-800-662-HELP (4357) and speak with someone at the national helpline run by SAMHSA, the Substance Abuse and Mental Health Services Administration. It’s free, confidential, and open 24 hours a day/365 days a year, available in English and Spanish. More information here.
Learn more about Swedish Pain Services’ “mini boot camp” for chronic pain patients (called the Structured Functional Restoration Program) here.
TRANSCRIPT
Anna Boiko-Weyrauch: This is Finding Fixes, a podcast about solutions to the opioid epidemic. I’m Anna Boiko-Weyrauch.
This is the third episode of season two—you could start listening here, but you’ll get more out of it if you start with the first episode of this season instead. And what I’m about to say next will make more sense.
This episode we’re in the middle of the swimming pool. All this season we’ve been talking about the opioid epidemic as if it were a big pool. Recap: The first time you take an opioid, you drop into the shallow end. The more you take, the deeper in the pool you get. And the deeper you get, the higher your risk of drowning—or overdosing.
(splashing water)
Boiko-Weyrauch: In the middle of the pool, that’s where we find people who are dependent on opioids. This is a very important point—dependence and addiction are different.
In the middle part of the pool—people have taken opioids for long enough that if they stop using, they’re going to feel sick. They’re dependent.
That’s different from addiction. When we talk about addiction, we’re talking about people who can’t control their use, and continue to use despite harmful consequences. Addiction is the deep end—that’s where it’s very easy to drown.
Now, the middle part of the pool isn’t totally safe either
This episode we’re focusing on a certain group of people in the middle of the pool. Patients who rely on opioid medication for months or years at a time. People with the medical condition called Chronic Pain.
We’re in the midst of a paradigm shift in pain treatment and opioids.
On this episode we’re going to zoom out and get a more complete picture of chronic pain—so we can understand where opioids fit in.
We're going to find out about one solution that is helping people feel better while scaling back on opioids. It's a program where doctors, nurses and therapists are working to give their patients a whole new set of tools.
First, a little chronic pain 101.
David Tauben: The Marines have an expression pain is weakness leaving the body. That is not what pain is.
Boiko-Weyrauch: Doctor David Tauben is the head of pain medicine at the University of Washington in Seattle.
Tauben: Pain is your body telling you you have to pay attention to something.For instance, a stone in your shoe. You pay attention to the stone. You take off your shoe. There's the pebble. You toss it out all is well.
Boiko-Weyrauch: Dr. Tauben likes examples like this. Pebbles, a campfire, a car alarm.
He says we need pain. It’s essential for life.
I’m talking to Dr. Tauben in his research office—a white board on the wall next to me filled with scribbles. The doctor wears round glasses, a bushy white mustache, I’m pretty sure his jacket is tweed.
For years doctors have used opioid painkillers as the go-to solution for all kinds of pain. Now that US society is saturated with these pills, and too many people are dying of overdoses, things are changing. Medical consensus about when and how to prescribe opioids is changing. Even some laws about it are changing. Doctors are getting the message to cut back. But some patients with chronic pain say they’re being cut off—all of a sudden—from the medicine they depend on.
So what’s the solution? What is the appropriate role of opioids? Answering that question means we have to re-examine what we think we know about chronic pain.
Ok, so what is this medical condition called chronic pain?
Dr. Tauben, pain professor, says that pebble in your shoe pain is different than chronic pain pain.
Tauben: We use the same word, pain, but it's two different things.
Boiko-Weyrauch: One is a threat, the other—and this is important—is a broken alarm.
Tauben: Another example, for those of us who live in cities and hear car alarms going off when there's no threat to the car. Sometimes the wind just sets it off or a truck goes by it just vibrates it a bit.
Boiko-Weyrauch: With chronic pain the body isn’t being threatened—maybe it’s even healed from the injury already—but still the alarm bells are going wild.
Tauben: And what makes it particularly difficult for people when they experience this, they're in the car and they still can't turn it off. And they're the only one who hears it. So they're all alone. They see no strategy to get out of the car. And it's really really interrupting. the noise is so intense that they cannot get their focus off the pain.
Boiko-Weyrauch: How terrible would that be to be trapped in a car where the alarm won’t. stop. shrieking.
It’s hard to know exactly how many adults in the US are in this situation. According to the Centers for Disease Control—estimates really vary. Depending on the study, somewhere from 11 percent to 40 percent of adults in the US have chronic pain.
The technical, simple definition is chronic pain is pain that lasts longer than three to six months after an injury has healed.
Really, it’s very complicated. So complicated, in fact, that the one word that medical professionals use to describe chronic pain is actually a mashup of three words—bio-psycho-social.
Tauben: So the bio means biological injury. The psychological response is that makes me anxious makes me worried. And the social is you're in the car all by yourself.
Boiko-Weyrauch: Those different factors make it more complicated to treat than an acute injury like, say, a broken ankle.
And here’s a sneaky thing—Opioids can do something weird to this broken alarm system. Opioids can make it louder and more sensitive.
Tauben: That's one paradox: the more you give of an opioid, the higher the dose, it turns out to be a demon in disguise.
Boiko-Weyrauch: That demon is called opioid induced hyperalgesia. That means normal sensations feel abnormally painful.
There are other risks too, of course. The more opioids you take, the more you build up a tolerance, so the more you need for the same effect. If you don’t have them, you can go into withdrawal—feel sick.
And, big doses can kill you—especially if they’re mixed with other drugs. Doctors prescribing so many pain pills is one of the many things that have gotten us to where we are today—with the highest number of drug overdose deaths in American history.
Now, Dr. Tauben will definitely say there are good reasons to take opioid pain killers for months or years on end—
Tauben: I'll say sickle cell disease, for instance, rheumatoid arthritis, lupus, ulcerative colitis.
Boiko-Weyrauch: Cancer for sure. A whole host of diseases. But not everything. Not even most things, he says.
Tauben: They are outliers, these are not common conditions. 90 plus percent of the conditions we see in ordinary medical practice do not require long term opioids.
Boiko-Weyrauch: And this represents new thinking. This is different than how primary care doctors in the 1990s for example, prescribed opioids—giving them out mostly for common conditions like back pain and headaches.
And, Dr. Tauben says, opioids can make some problems worse.
Tauben: The way I look at those conditions—let’s go back to the campfire.
Boiko-Weyrauch: Here’s the campfire example—it represents pain burning in your body.
Tauben: If we took a kerosene filled squirt bottle and squirted that onto the fire. That's how opioids interfere with recovery of those conditions.
Boiko-Weyrauch: And so, contrary to previous practice—opioid painkillers are a bad idea, he says for headaches, a sore back, fibromyalgia, because they make the problems worse.
So what do we do about that broken alarm system? Dr. Tauben says there’s another way—another option that doesn’t have to do with pills.
Tauben: Pain is a signal that tells us we need to pay attention. In this case, let's stop paying attention to that pain sensation which is really like an optical illusion. Let's pay attention to life. Let's pay attention to your psychological state. Let's pay attention to your relationship to your family your friends. Let's pay attention to what's meaningful and purposeful in your life because positive social experiences meaning and purposefulness in one's life actually calm the brain. So the fire in the campfire we're talking about earlier will extinguish itself by meaning and purpose.
Boiko-Weyrauch: Now, to one place that focuses on restoring meaning and purpose to patients’ lives. A place where opioids are one tool of many.
Timothy Zepelak: Are there any particular activities that really flare it up you know like washing dishes or vacuuming, reaching up in the cupboard or anything like that?
Boiko-Weyrauch: At Swedish Hospital in Seattle, a physical therapist is learning about chronic pain patient Kimberly Bergrud.
Kimberly Bergrud: Picking up my little granddaughter who I just absolutely adore and she's seven months old so she’s starting to get a little weight on her. That really irritates my shoulders and neck.
Boiko-Weyrauch: Kimberly has pain along the back of her neck, across her shoulders, and down her arms. It’s caused by a hereditary inflammatory disorder called polymyalgia rheumatica. She also has knee replacements in both legs—and both of them hurt.
When I met her early March 2019, Kimberly was taking a low dose opioid medication—Tramadol, 50 milligrams up to twice a day. It’s one of a few things that helped.
Zepelak: And the things that help to bring your pain down would be?
Bergrud: A hot shower.
Zepelak: A hot shower.
Bergrud: Resting. Um, well I've gone dancing with friends and you know it'll feel good while I'm dancing. But then as soon as I stop it's like I just seize up and tighten up and then it comes back again. But it feels good in the moment.
Zepelak: Feels good when you’re doing it. What kind of dancing do you like?
Bergrud: Oh, you know (laughs).
Zepelak: Little ballroom?
Bergrud: Oh god no. Just you know I'm from the Led Zeppelin generation so you know we do a lot of this kind of stuff.
Boiko-Weyrauch: Kimberly raises her arms and sways.
Today is her first day at a program that’s designed to teach her how to manage her pain.
It’s kind of a mini boot camp for people with chronic pain. The point is not to get Kimberly off opioids. The doctors here do actually prescribe opioids—and they decided Kimberly would benefit from a low dose, by the way. But, the point of the program is bigger than that. It’s to help Kimberly learn about her pain and take control of it using a lot of tools.
For the next month she is going to be in classes and one-on-one counseling three days a week. It’s called the Structured Functional Restoration Program.
On the first day, the doctors and therapists, like this physical therapist named Dr. Timothy Zepelak, ask her a ton of questions to figure out what she needs.
Zepelak: So when is the last time that you felt you were moving, living life the way you wanted to live it. Has it been a year, five years, ten years. What do you think?
Bergrud: Probably over 15 years
Zepelak: 15 years ago.
Bergrud: It started 19 years ago and you know it's just affected me I had to give up my job. And that was really difficult.
Boiko-Weyrauch: Dr. Zepelak types notes into a computer.
Zepelak: And currently, are you doing any kind of work?
Bergrud: Oh, yes. I do a lot of work but I'm not getting paid for it. I take care of my granddaughter two days a week. I take care of my current husband who has progressive supranuclear palsy, COPD, and a bad back. So I do all of the maintenance of the house and we're getting our kitchen remodeled which has required a lot of extra work. So I do everything from paying the bills, buying the food getting the medicine doing the work for two people, basically.
Zepelak: it's a lot, a lot.
Bergrud: it is.
Boiko-Weyrauch: Next up, the physical therapist brings her to the hallway for a test.
Zepelak: Ok, so if you want to stand behind this orange cone.
Boiko-Weyrauch: He’s checking out how she walks.
Zepelak: Any questions? No? Go for it.
Boiko-Weyrauch: Kimberly paces up and down a hallway. She has six minutes.
(Foot steps)
Boiko-Weyrauch: Two minutes go by. She sighs as she passes me, at three minutes she's slowing a little.
Bergrud: ...starting to hurt.
Boiko-Weyrauch: At four minutes she says her knees and ankles are starting to hurt. So are her shoulders—Kimberly taps her plastic reading glasses on them, showing Dr. Zepelak where.
Zepelak: Do what you can do. You can stop if you need to right.
Bergrud: No no no.
Boiko-Weyrauch: She doesn’t stop.
Forty five seconds left—she’s losing her balance
Zepelak: Almost there 3-2-1. Stop. Very good. Ok I will meet you back in the room. You can take a little rest.
Boiko-Weyrauch: After the test, she sits down and catches her breath. Kimberly doesn’t complain about her pain. That’s not the kind of person she is. Instead, she asks me how I’m holding up.
That’s another thing you should know about Kimberly. When she talks about herself, she always uses the word caregiver.
Bergrud: All of my life I've done a lot of caregiving and you know it's a place of comfort. But at the same time I think it's really taking a toll on me.
Boiko-Weyrauch: Ironically, she has a hard time taking care of herself. But if she is going to overcome this constant pain that’s ruled her life for fifteen years, taking care of herself is exactly what she is going to have to learn to do.
Becca Taylor: I think the whole approach it's the opposite of a silver bullet.
Boiko-Weyrauch: Becca Taylor is a nurse and helps manage the mini boot camp for pain patients. Becca is part teacher, part healer, part air traffic controller.
Taylor: We're not trying to do one thing that's going to take care of everything we're looking at the big picture and trying to see all the things that can be helpful and put those things together, and that’s actually where you get the momentum.
Boiko-Weyrauch: The program has a lot of moving parts. In addition to that physical therapist from earlier, patients meet with a relaxation therapist, an occupational therapist, a psychologist, and a doctor. They take classes, they get homework, and they carry around a three ring binder.
This is one reason why opioids are popular with doctors, patients, and insurance companies—they’re a lot easier, a lot less work, and a lot less expensive
Taylor: Opioids or medication often is the thing that the tool that people come into the program with. It's the thing that has been the most helpful even though it's not taking away the pain. And it's really the only thing that they know how to use. And our job is not necessarily to take that away. It's really to give them a broader skill set a bigger tool box.
Boiko-Weyrauch: Chronic pain is too complicated for just one tool.
Becca says the biggest results for patients come when they can learn the new tools and start using them together.
Kristin Vinci: So this chair actually reclines.
Boiko-Weyrauch: Another physical therapist, Dr. Kristin Vinci guides Kimberly through her first new tool—her breath.
Vinci: And you can push the chair back a little bit.
Boiko-Weyrauch: Kimberly pushes a big squeaky recliner back and rests her head on a pillow.
Vinci: As it's comfortable try to switch to what feels to you like a focused diaphragmatic breath.
Boiko-Weyrauch: The physical therapist is teaching Kimberly how to breathe using her diaphragm, the big dome of a muscle at the bottom of your ribs.
Dr. Vinci sits a few feet away and watches intently
Vinci: Allow the muscles of your neck and chest to be relaxed as possible.
Boiko-Weyrauch: Kimberly’s chest and belly rise and fall.
Vinci: And try to make your breathing a little smoother, a little deeper, and a little longer than your natural breath.
Boiko-Weyrauch: Kimberly usually uses her chest to breathe, but that’s not the best. The diaphragm—that big muscle, helps us relax.
Vinci: Just allow your breathing to return to relaxed natural breathing.
Boiko-Weyrauch: Breathing from the diaphragm helps Kimberly escape from her constantly stressed out state
Vinci: And when you’re ready you can open your eyes.
Boiko-Weyrauch: Kimberly says she feels progress.
Bergrud: I really could feel the difference in the pattern of the breath. And then it really felt good after I finished that breathing to have a little less tension everywhere.
Boiko-Weyrauch: Kimberly is starting to shift the state of her body. It’s a step towards controlling the pain.
Taylor: Nervous system regulation is really one of our core concepts.
Boiko-Weyrauch: Here’s nurse manager Becca Taylor again. Chronic pain patients in the program learn about the network of nerves in our bodies—and how the nervous system responds to what’s going on around us.
Taylor: You know we have this kind of stress response this fight or flight response. And we also have this relaxation response. And Americans tend to live in more of a fight or flight response. We tend to drink stimulants. You know there's a lot of things we do to kind of stay on and ready, and challenge can be helpful in helping you perform well too. But your body actually does need to be able to do more than just respond and be ready to perform. You need to be able to rest and restore. You need to be able sleep. You need to be able to rebuild your immune system and digest your lunch. Those things are difficult to do when you're in that fight or flight state.
Boiko-Weyrauch: It’s kind of like our bodies have a gas pedal and a brake pedal. They’re built into one part of the nervous system, in our autonomic nervous system. Stress pushes the gas pedal. Relaxation pushes the brake pedal.
You can push that brake pedal, too, with deep breaths. Really?
Boiko-Weyrauch: I can see how somebody you know who's in a lot of pain would be like, “Are you kidding me? Like you’re just telling me I need to take deep breaths?” Do you get that sort of skepticism from people at the beginning?
Taylor: Oh yeah, absolutely. But then you talk people through it. I mean I really—we spend a good amount of time talking about nervous system, how your autonomic nervous system really works what the effect of physiological effect on your nervous system of pain itself is. And then all the other stressors a person has in their life and it starts to make more sense to people. People who have pain have a terrible time relaxing.
Boiko-Weyrauch: But relaxing doesn’t mean spending a lot of time on the couch, like you would if you had a sprained ankle. It means finding ways to calm your nervous system.
Taylor: You know, some kind of pain is probably going to be a part of your life going forward you really need to treat it differently in order to get back to doing the things you want to do and have a better quality of life.
Boiko-Weyrauch: This program has a lot of success stories.
The day I visited, Swedish Hospital invited in two people with chronic pain who had completed the program. Michele De Camp and Mary Leyden. They told me how it changed their lives.
First, Michele. She says she developed debilitating pain in her left hip about ten years ago. Before the program, she was on lots of oxycodone and wasn’t working. Instead, she just lay in a blanket at home.
Michele De Camp: I feel like I must have watched a lot of TV but I don't even really remember that.
Boiko-Weyrauch: The pain was too much to focus.
Before this time in her life, Michele used to be a bank manager and a self-described workaholic—but with the pain, she felt herself slipping away
De Camp: I had years where I used to be so super sharp. Really remember numbers really well especially with my job and I would lose words in the middle of speech. I would not be able to add simple numbers anymore.
Boiko-Weyrauch: Finally, she found this program at Swedish. It gave her new tools and it changed her outlook—a lot.
De Camp: I think it's accepting the fear, accepting the pain and then seeing where that leads you changed my perception of it a lot. In the last year is probably the first time I feel like I have my mental functioning coming back. After you've been on medicine for so long you don't know how much it affects you.
Boiko-Weyrauch: When we talked, Michele was still on opioids, but much less. More importantly, she’s learned there are a lot of good things in life to focus on, beyond the pain.
De Camp: I would be so bound in my pain that my experience of life was super limited. So physically one day actually driving in the car and seeing the shapes of the clouds and just saying oh my goodness that's beautiful. I can't remember the last time I saw the clouds.
Boiko-Weyrauch: Mary Leyden, the other former patient, had a similar experience. About seven years ago Mary’s back started hurting. It got worse and worse.
Mary Leyden: It just was hard to lift things you know hard to go up and down stairs. And then as the years wore on you know my legs kind of stopped working and I got pain up and down my body and my arms were hurting and as we learned in this program my brain just sort of changed and started responding to little pains differently.
Boiko-Weyrauch: So Mary responded to the pain by holding back.
Leyden: As my son got older, you know I would go to the playground but I would just sit there. I was always behind a cloud of this pain.
Boiko-Weyrauch: About a year ago, her primary care doctor found out about the program at Swedish Hospital. Mary went—she says it’s given her back her enthusiasm for life. Her ability to play with her son.
Boiko-Weyrauch: What was it like the first time you rode a bike with your son?
Leyden: I cried. I cried. It was. It was wonderful. And we just rode around the you know the flat playground. But you know he had no idea he was just like riding around like you know. But I was so proud—I was so proud of myself to be on the bicycle. It was wonderful. It was magical.
Boiko-Weyrauch: It’s been freeing too.
Leyden: Instead of being like focused on my pain all the time I'm sort of focused on everything else and then oh there's pain in the background but it's in the background it's not in the foreground.
Boiko-Weyrauch: This is what all the doctors and therapists want for Kimberly too. She’s the pain patient who just started this program. Doing things she loves will make her happy—meaning and purpose—that will help with the pain. But Kimberly is not good at making a point of enjoying herself.
Sonja Braasch: So gardening is tough because you have to bend down?
Bergrud: I can't get on my knees anymore.
Boiko-Weyrauch: It’s the end of the day at this pain boot camp—and the final crucible. An unexpectedly tense conversation about planting bulbs.
Braasch: Is there any part of that activity you can do and have someone drop in the bulbs—in the hole?
Bergrud: It's not the bulbs dropping—it's the digging.
Braasch: It's the digging part. Can you have someone dig?
Boiko-Weyrauch: Kimberly is talking with an occupational therapist named Sonja Braasch. Earlier today, Sonja told me her job’s like being a coach, motivating people to make changes, problem solving together.
Right now she’s pushing Kimberly to ask for her daughter’s help with gardening.
Braasch: And you can always say hey I'll cook you a little bit of lunch if you come over. Is there any other part of it.
Bergrud: Well, take her out to lunch.
Braasch: Yeah, take her out to lunch. Is there any part of that activity you can do?
Bergrud: Well, I think I can do some of it. It's just having the motivation to do it. When you're dealing with pain all day long. It's like and all the other things that I'm dealing with. It's like saying Okay can you really take a step back and do this and usually the answer is no. I'm tired and I wake up tired.
Boiko-Weyrauch: But Sonja presses on.
Braasch: So make it realistic and then you get to see them grow which is, that's part of the fun right?
Boiko-Weyrauch: The bread and butter of what she teaches is called pacing, breaking up a task into smaller pieces that are realistic.
It’s another important skill.
Braasch: So I have three YouTube videos that are just giving you education.
Boiko-Weyrauch: Kimberly gets homework.
Bergrud: All right.
Braasch: All right have a good evening.
Bergrud: Thank you, you too.
Braasch: Yeah, I will.
Boiko-Weyrauch: Kimberly has a good chance of improving.
They're still compiling data on this program—but they say, patients end up with less pain, depression and anxiety. Patients tend to get back to activities they enjoy, like walking and gardening. These so-called interdisciplinary pain rehab programs help wean patients off high doses of opioid painkillers, and manage their pain.
But—for all the good results, there’s a catch. For one, the cost.
Dr. Steven Stanos is the medical director here. He says it can be expensive even if you do have insurance.
Steven Stanos: We have patients here in our pain program. They're paying multiple co-pays a day just to be here which makes no sense. And many times that keeps us from having patients participate in the program because they're paying so much out-of-pocket. That's not appropriate.
Boiko-Weyrauch: Dr. Stanos says the medical community—even the federal government—is starting to understand that we need to treat pain differently. Insurance companies are taking some time to catch up.
Stanos: I think with the opioid epidemic and the response to that is that we have to improve comprehensive pain care. The problem is the health care system is not really built yet to support this.
Boiko-Weyrauch: At the end of the day, Kimberly is tired. Waiting for the elevator, she tells me that last session with the occupational therapist was a little intense
Boiko-Weyrauch: What was intense about that?
Bergrud: She talks too fast for me. It's just like prrrrrrrrrhrhrhrhrhrhrrh.
Boiko-Weyrauch: Do you think you're going to be able to do all this homework?
Bergrud: Oh yeah I'm going to do it. I have to just I didn't sign up for this just to not do it.
Boiko-Weyrauch: We’ll check back in with her in a few weeks. Kimberly is going to learn not only about her pain, but some new lessons about herself. You’ll hear her story unfold over the season.
On this episode we learned how opioids can be one tool for managing pain. Chronic pain is complex, and treatment that includes a lot of tools shows it can work. Teaching people how to connect with their bodies and soothe their broken alarm systems—that can help keep them from moving deeper into the pool, and keep them from drowning. On top of that, learning skills to manage their own pain can help them get back to enjoying life.
To get to the heart of the matter, we need to rethink how we think about pain.
Next time on Finding Fixes we get even closer to chronic pain.
Anne Hoffman: Chronic pain, I can tell you in personal terms, can destroy lives.
Boiko-Weyrauch: And we hear an intimate take on a subject that can be taboo.
Hoffman: Simply put, on medical marijuana, I had fewer migraines and less pain. But I navigated this path alone.
Boiko-Weyrauch: For some chronic pain patients, medical marijuana is taking the place of opioids.
Finding Fixes is a project of Investigate West, a nonprofit journalism organization working in the public interest.
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This episode was created by me, Anna Boiko-Weyrauch, and producers Nicolle Galteland and Kyle Norris. Alisa Barba is our editor. Music by Jake Weholt.
Special thanks to everyone we talked to in this episode for being so generous with your time and knowledge.
And thank YOU so much for listening.