'Pain Chronicles': Understanding Pain As A Disease Most people think they understand pain. An injury hurts, but as it heals the pain fades away. But chronic pain, says Melanie Thernstrom, is different. In The Pain Chronicles, Thernstrom writes about her journey to understand suffering, pain management and the complex nature of pain.
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'Pain Chronicles': Understanding Pain As A Disease

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'Pain Chronicles': Understanding Pain As A Disease

'Pain Chronicles': Understanding Pain As A Disease

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NEAL CONAN, host:

This is TALK OF THE NATION. Im Neal Conan in Washington.

Years ago, writer Melanie Thernstrom developed a pain in her neck that poured through her right shoulder, down into her arm and into her hand. It never got better.

After a long period of denial, she went to doctors, one after another, and eventually concluded that there was no surgery, no manipulation, no magic-bullet cure. She believes we need to reconsider our definition of pain.

Most of us tend to think that pain is what happens when you break a bone or cut yourself. When it heals, you feel better. But for many millions pain does not go away. It's not a reaction to a sprain or a fever, it's a disease of its own.

Later in the hour, the art of jury selection, but first, if you suffer from chronic pain, have you redefined your condition? Is pain a disease? Tell us your story, 800-989-8255. Email us, talk@npr.org. You can also join the conversation at our website. Thats at npr.org. Click on TALK OF THE NATION.

Melanie Thernstrom joins us from Palatine Studios in Portland, Oregon. Her new book is "The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing and the Science of Suffering." Nice to have you with us today.

Ms. MELANIE THERNSTROM (Author, "The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing and the Science of Suffering"): Oh, thank you for having me. I love this show, and it's a thrill to be on.

CONAN: Oh, thank you very much, nice of you to say that. When did you start to think that that sort of I guess 19th-century definition of pain you cut yourself, it hurts, it gets better that that was no longer adequate?

Ms. THERNSTROM: Well, as a patient, I didn't figure it out at all. I just had the experience of going to doctors and waiting to be told what my cure was. And they would talk about pain management, and I would think, well, you're not the doctor for me because I'm not interested in managing in my pain. I'm interested in having my pain cured. And then I would go look for another doctor, a cure doctor, and I never found the cure doctor.

And then I just gave up. Instead of doing what I could do, I just turned my face to the wall. And then by coincidence, as a journalist, I got an assignment from the New York Times magazine to write about chronic pain. And I started visiting pain clinics all over the country and talking to doctors and scientists.

And that profoundly changed my understanding of pain, and I realized so much of what I had believed about it was not only untrue but was unhelpful, and that's really why I wrote the book. I wanted to share with patients my findings.

CONAN: And indeed, you go through a couple of definitions of pain. We'll get to those in a moment. But you said you were looking for a cure. At first you went to, for example, an orthopedist who said oh, rotator cuff injury. And, you know, that can be cured. You have surgery.

Ms. THERNSTROM: Right, right. But then I went to another orthopedist who didn't think that surgery was necessary and said it would simply heal on its own. And so I gave it six weeks to heal. And then I gave it, you know, 15 weeks to heal. And then I gave it 52 weeks to heal, and it didn't heal. It actually got worse.

And with ordinary pain, it does heal over time. And the difference with chronic pain is that it actually worsens over time because it makes changes in the brain and spinal cord that make the pain signals transmitted more efficiently.

So there is what is called the chronic pain windup, and patients have this eerie experience that pain begins to lead a life of its own, and pretty soon, the original injury just doesn't matter anymore. What matters is that the pain system itself is broken.

CONAN: You also consider the nature of our pain and describe it, of course, as part of the human condition. We're born in it, and most of us will die in it, as well. Nevertheless, pain is something that is absolutely critical to our evolution and that we perhaps as the, as we'd like to think, the most-evolved creature on the planet, have more pain than any other.

Ms. THERNSTROM: Yes. It's a very interesting thing that ordinary pain is tissue protection, is designed to protect us from harm. And people who are born with the genetic disease called congenital analgesia, where they don't have the ability to feel pain, like we think oh my gosh, aren't they lucky, you know, they can't feel pain, in fact they always die by their early 20s because they destroy their body.

They walk backwards on their joints. They chew their tongues. They gouge their eyes. You realize how quickly the body would become destroyed if we weren't constantly given this negative feedback to protect it.

But the difference between ordinary pain and chronic pain is that chronic pain is not protective. Chronic pain doesn't actually serve any function. It's simply the pain system itself going haywire.

CONAN: And the example that I think everybody has heard of is the phantom limb syndrome, where after something's been amputated, people continue to feel pain in the limb that is no longer there.

Ms. THERNSTROM: Yes, that's one of the most vivid examples of the fact that we think of pain as originating in the body, but in fact, pain is a perception in the brain. And chronic pain is a misperception in the brain.

And so in phantom limb pain, the part of the brain that actually maps the body, that part, the pain alarm has been activated and has gone crazy. And so you experience is as coming from, say, a hand that is no longer there, but it's actually coming from your brain.

And much, although phantom obviously, phantom limb pain itself is rare, missing limbs is rare, that's actually a very good model for chronic pain. That chronic pain originates in these errors in the brain.

CONAN: And in search for answers, you found something and I'm not sure I'm going to pronounce this correctly, but a papyrus from Egypt, the Ebers Papyrus?

Ms. THERNSTROM: Yes. I was fascinated by the fact that the earliest writing, like the cuneiform tablets of ancient Mesopotamia, of Babylonia, of Assyria, as well as the ancient Egyptian Ebers Papyrus, these are very preoccupied with physical pain.

And a lot of times, I saw modern translations of them where they would reinterpret the pain to mean sort of spiritual pain or, you know, separation from the divine. But when I looked at actual scholarly translations, they were talking about physical pain because physical pain was such a dominant sense until recently of people's basic experience of life on Earth.

In the Babylonian creation myth, there is an explanation for toothache, and, like, that is...

(Soundbite of laughter)

Ms. THERNSTROM: That's part, you know, that's part of how the world was born is toothache came to be. And there's also a solution to toothache based on knowing the origin of it. And I remember thinking wow, you know, toothache was such a prominent part of their consciousness, it required this, whereas toothache for us is not something we think about that much because we get it fixed.

CONAN: And we don't think much of the practice of supplicating demons, but you write that the Ebers Papyrus explains magic is effective together with medicine. Medicine is effective together with magic. Although it would take millennia to understand why, magic is effective together with medicine, and medicine is effective together with magic. And are you speaking there of the placebo effect?

Ms. THERNSTROM: Yes, that was I'm so glad that you found that quote because that was a quote I came across early in my research, and that it stayed in the back of my mind and began to seem to me truer and truer and more wise as I understood the contemporary brain science.

Because pain, like love, is a perception in the brain, the brain also has the ability to control pain, and the brain has its own internal pain modulation systems. It has its own internal opiate-like substances. And in different states of mind, the brain can control pain. And that's in a way the magic of - magic is effective together with medication.

It's the placebo effect, but even more striking, the placebo effect is part of all pain treatment. If you give a patient morphine, and you tell them I'm giving you a powerful painkiller, it's one-third more effective than if you give them morphine without them knowing it. Like you just put morphine in their IV and don't tell them, it's not nearly as powerful, because with any pain treatment, we need the brain to kick in its own internal magic.

CONAN: We're talking with Melanie Thernstrom, author of "The Pain Chronicles," 800-989-8255. Email talk@npr.org. Wendy's(ph) on the line from Lodi in California.

WENDY (Caller): Hi. I'm so grateful to hear all of this on the radio because I also have some chronic pain. And I spent years being really angry at my doctors, thinking that either they were saying there was no cause my pain, so I should just kind of get over it, or that they weren't going to fix. I don't know what that was about.

But I'm just so grateful, and I wondered if your guest also had that experience of just thinking, well, jeez, why won't you guys help me, or why aren't you helping me?

Ms. THERNSTROM: Yes. No, I think I very much had the illusion that doctors had a cure that they were withholding and that I simply needed to find a new doctor because for some reason they were withholding this. And it took me a very long time to come to terms with the fact that there wasn't a cure but that I could find treatments that would manage my pain and reduce it to a manageable level.

And in pain clinics, the patients I saw who got well really persevered. They didn't give up. They actually tried 101 things, and the 101 combination was the one that brought their pain to a manageable level.

When pain is the first or second thing in your mind, life just isn't worth living. When pain is the fifth or sixth thing in your consciousness, just reducing it, you know, 10, 20, 30 percent can mean that it's in the background of your thoughts, and it no longer drives you crazy in the same way it can be in the background of your mind that it's raining out, but it's not ruining your day.

So I really, you know, both yes, you know, there may not be a magic cure for your pain, but I really encourage you to be aggressive and keep seeking treatment until you find a treatment that works for you, and...

WENDY: I'm just so thankful to hear somebody acknowledge that there isn't necessarily a causory thing, you know what I mean? That you didn't necessarily break your back in half or you know? It just makes so much more sense now, and I'm just so thankful. And I'm sorry. I'll free your line. But thank you so much.

Ms. THERNSTROM: Oh, thank you for calling, and good luck.

WENDY: Thank you.

CONAN: The book is titled "Pain Chronicles." More with Melanie Thernstrom in just a moment and more of your calls, 800-989-8255. Email us, talk@npr.org. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

(Soundbite of music)

CONAN: This is TALK OF THE NATION. Im Neal Conan in Washington.

We're talking with Melanie Thernstrom about "Pain Chronicles," her new book about the science and culture of pain. To be in pain is to be alone, she writes, to imagine that no one else can imagine the world you inhabit. Yet the world of pain is one that all humans must at times inhabit, and their representations of it pierce us through the ages.

Head pain has surged up upon me from the breast of hell, laments a Babylonian in a story three millennia old. The agony of the ancient sculpture of the Trojan priest Laoco´┐Żn and his sons as they are strangled by sea serpents still contorts the ancient marble, as does the very different agony of Jesus's crucifixion in Matthias Grunewalt's Renaissance altarpiece. Dolor dictat, the Roman said - pain dictates, dominates, commands.

If you suffer from chronic pain, have you redefined your condition? Is it a disease? 800-989-8255. Email talk@npr.org. You can join the conversation at our website. Thats at npr.org. Click on TALK OF THE NATION.

And Melanie Thernstrom, I wanted to ask you, given that last caller who said, you know, the doctors just simply didn't - there's no cause of it, you can't possibly be in pain, it's not real - you found that in fact the modern science of brain imaging has managed to locate some real pain where doctors couldn't before.

Ms. THERNSTROM: Yes. I think one of the most exciting areas of research is brain imaging of pain, and it's able to increasingly document the harm that pain does. One of the most frightening recent studies that I write about is one which showed the way that chronic pain atrophies the gray matter of the brain.

The gray matter contains neurons and is associated with intelligence and cognition in humans. And it atrophies in everybody, but in patients with chronic pain it atrophies twice as quickly.

So one year of living with chronic pain is like two years of living normally, and so they were able to see that a patient who had had chronic back pain for five years, his gray matter was that much more atrophied than one compared to one who hadn't.

So the feeling that patients have that pain is actually harming them turns out, you know, more and more literally to be true.

CONAN: Let's go next to Diana, Diana with us from Tucson.

DIANA (Caller): Hello.

CONAN: Hi, Diana.

DIANA: I was diagnosed, luckily, with quickly - with fibromyalgia to over 20 years ago. And I do, I provide support in this community. And what I've grown to understand about chronic pain is that the emotions of chronic pain are not really understood by the medical community, that doctors don't understand how to deal with someone emotionally. And there's a lot of different kinds of emotions that come with living with chronic pain, and that I'd like to see more of that.

And I'm actually looking at writing a book about that because women complain constantly about how they're treated in the doctor's office to me.

Ms. THERNSTROM: I think that's just an excellent point. So thank you for calling. There's a study that I write about called a Norwegian study called "It's Hard Work Being a Credible Pain Patient." And it's interviews with women suffering from chronic pain.

And they describe the extraordinary effort that goes into presenting themselves as a credible pain patient, where they don't want to seem too sick because they've all had the experience of being dismissed as crazy and just referred to for counseling and not getting treated, but if they present themselves as handling it too well, as seeming too well, then their pain is also not taken seriously.

They - you know, should they dress very well, then they'll seem too together. If they dress sloppily, will they seem too not together? That women have to walk this very delicate line. And the majority - chronic pain is much more prevalent in women, and women are more sensitive to pain in laboratory tests, and women are more prone to pain-causing conditions.

Yet ironically a majority of pain specialists are male. And I think that itself creates a problem, where you have women trying to persuade men of the validity of their pain.

DIANA: Yes, and I think there's a tendency for pain patients to try to rely on the medical field to improve their pain. And so that's why I think support groups are important. And I really try to push that, whether it's the placebo effect or whatever, that support is a key part of living with your pain.

Ms. THERNSTROM: Oh, absolutely. I mean, and because, as you know, as we're talking about, pain is a perception in the brain, and it draws on the emotional parts of the brain. And in fact if it does not draw on those parts, it's not pain.

People who have a tumor in the emotional parts of their brain, they are unable to feel pain. And so it inevitably is an emotional experience, and if you can change the emotions surrounding pain, you actually do change the pain itself.

And, you know, for example, in a pain toleration test in a laboratory, people can endure a painful stimulus twice as long if they're with somebody as if they're given the test alone.

So I think a support group is invaluable, and being part of a community that understands what you're going through.

CONAN: Here's an email to this point as well. Maggie(ph) in Oregon: As someone who has lived with chronic pain for almost 20 years, what I find the most difficult aspect is being normal - working, paying bills, shopping and all the while keeping cheerful and upbeat when all you feel like doing is crawling into bed until the pain goes away.

Ms. THERNSTROM: Yeah, very poignantly put. I mean, I think an interesting thing that people with pain find is there's an impulse to, you know, withdraw and cry, and one thing that I was very struck by is, you know, I've had emotional sorrows and pains before and I had - I had often had the feeling of, like, well, I'll just get into bed, I'll cry about it, and then I'll feel better.

And if you get into bed and cry about your pain, you notice that when you stop crying, your pain is actually worse. You don't feel better. That distraction and trying to focus on other things and trying to go about your life even when you feel like you're pretending really is the best pain treatment, you know, or is a very good pain treatment.

And there are laboratory studies that show when you give someone a painful stimulus, if you give them a counting task at the same time, and then you scan their brain, the brain doesn't generate as much pain because the brain is busy adding numbers.

So distraction literally keeps your brain from generating pain.

CONAN: Diana, thanks very much for the phone call. Good luck you.

DIANA: Thank you.

CONAN: Bye-bye. Another email, this one from Karen(ph) in Alameda, California: I have chronic pain and tried hypnosis for pain treatment. I went one time and it was helpful but very expensive, so I couldn't go back. Too bad insurance will not pay for this treatment but will pay for pain medication for life.

Ms. THERNSTROM: Yeah, that I mean, that's an excellent point. And hypnosis and meditation really does help some people because it helps them access their own brain's capacity to modulate their pain, and for people for whom that works, that obviously is a much better option than taking pain medication, which has terrible side effects.

CONAN: Let's go next to Barry, Barry with us from Fayetteville, Arkansas.

BARRY (Caller): Yes, thank you so much for this program, Melanie and Neal. Thank you for getting the word out there.

I have been in terrible pain for 25 or more years. I was an athlete. I was a track and field athlete. I played rugby in college. But I hurt my back, lower back, back in the '80s. And a lot of what you know, a lot of what some of the women have said today also goes for men.

I would go to pain doctors. I would go to orthopedic doctors. They told me, you know, to seek counseling for my pain. I was diagnosed with MS back in the mid-'90s and also a condition called adhesive arachnoiditis. It was from a botched spinal cord surgery.

So the pain just got so much worse towards the end of the '90s, and I got to where I just couldn't sleep. I couldn't hold a job. I couldn't keep a relationship. I, you know, I would - I started a yoga practice. I would go to massage therapists.

Then I went to a pain management doctor who prescribed methadone, and I refused - you know, I went home, threw the prescription in the trash because I just didn't want to take any type of pain medication.

A year or so later I was just about the point of suicide, and I went to another pain doctor. He also prescribed methadone, and I started on the very smallest dose. And it's made a big difference in my life.

And I'm not recommending it for everyone, but it's helped me. It's changed my life, and...

Ms. THERNSTROM: That's wonderful. It's just yeah, it's really great that you're sharing your story because a lot of times, you know, patients - where opiates is the one thing that will turn it around for them, they feel like there is too much of this stigma and too much prejudice and fear around opiates, and they don't talk about it. And that makes other people more afraid to take them and feel more alone.

BARRY: Right.

Ms. THERNSTROM: They - so I think it's really wonderful that you're calling.

BARRY: You know, my doctor - these are very low doses. My doctor is - I mean, he and these medications, they aren't the only - I'm doing a lot of other things. I still have a yoga practice. I still go to massage -to a massage therapist once a week. I'm walking again a little bit. My MS is under control, it seems like.

CONAN: On a plateau?

BARRY: Yeah, not getting considerably worse. I - so, you know, I'm living again. I'm not working. You know, I'm still - but life is - you know, I'm living. And I love this show.

CONAN: All right. Barry, thank you very much for the call and continued good luck to you.

BARRY: Thank you.

Ms. THERNSTROM: Yeah, good luck. Thank you for calling.

CONAN: It's interesting. He was talking about some therapies that people might consider alternative. And there was a point in the book where you said you tried them but they didn't work for you because you didn't believe them.

Ms. THERNSTROM: Yes. I mean, that's the problem with a lot of alternative therapies, is you do have to believe because you need to access, you know, the internal magic. You need to access your brain's pain modulatory system. And if you try them in a skeptical way, you're not going to get that magic in the same way. You know, there's no point in saying a prayer if you don't have religious faith. You're not going to have the benefit of prayer.

So I found that a bit of a Catch-22, where I would research the alternative treatment. I would find it's not more effective than placebo, but placebo can be very effective. But it's not effective if you know it's placebo.

CONAN: Hmm.

(Soundbite of laughter)

Ms. THERNSTROM: But I guess I'm - just to follow up on the last call, I do - I mean, opiates are not for everyone. They don't work for me because they make me feel very dazed and out of it. But some people tolerate them very well.

And I do write in the book about a pain doctor who is in prison now because some of his patients abused opiates and he was held responsible for it. And then the other patients of his - he went to jail. The other patients of his couldn't find a doctor willing to prescribe them opiates because they didn't want to take the risk. And they became chronic pain patients. They stopped being functional. They ended up having their lives destroyed because of it.

So I do think that there is a lot of fear and also poor public policy around opiates, although they are not for everyone.

CONAN: We're talking with Melanie Thernstrom about her book "The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering."

You're listening to TALK OF THE NATION from NPR News.

And here's an email from Susan in Atlantic Beach, Florida. I suffered for years from terrible shoulder pain due to arthritis. I tried acupuncture, massage, drugs, even an alternative form of healing called the reconnection. Nothing worked. An orthopedist said I was depressed -of course I was - and put on antidepressants, which worsened the entire situation. I finally had a shoulder replacement, and I am now blissfully pain-free. My arm is not as mobile as before, but with yoga and stretching it's improving every day. My pain was so intense that I really did not think I could continue living. I am so fortunate to have found a skilful surgeon. And sometimes surgery makes the problems worse and sometimes it makes it better.

Ms. THERNSTROM: Yes. No, that's a good point. And surgery is a very big gamble, and so the people who it works for are so happy they did it. But very often, you know, I interviewed hundreds of patients in pain clinics all over the country, and many of them are there having - in the wake of a pain surgery that actually made their surgery - made their pain worse.

I think people have the idea that, that the worse that can happen is the surgery won't help. But, in fact, every time you go in, you know, you create - you cut open the body, you damage nerves, you create scar tissue, and often people's pain gets worse. So it's a decision to be made very carefully. But I'm - you know, I'm delighted it worked for her.

CONAN: Let's go to Mark, Mark with us from Wichita.

MARK (Caller): Hi there. First, let me go ahead and say that I've been listening to NPR for a long time, and it's almost regretful that this is the first that I have heard that I can actually respond to and have a conversation about. I've been in chronic leg pain since I was nine years old, and I'm 22 now.

Ms. THERNSTROM: Hmm.

CONAN: I'm sorry.

MARK: And I've been listening to everyone's calls and emails. And I think I'm on the other side of this particular issue. For me, the pain I go through every single day is actually the theme for my entire life, and that's not in a bad connotation either. It's actually very therapeutic for me now.

It's - I mean, I'm not going to say I'm a masochist, because that's not accurate. But I'm a writer, and every theme throughout the books relates to some kind of pain and overcoming it and, you know, acknowledging its presence and then fighting against it and continuing on. I mean, that's - and that's the way I live. I mean, I have never, you know, said oh man, my leg hurts so bad, I can't do this. It's always my legs hurt, I'm going to defy it and do it anyways.

CONAN: So accept the challenge.

MARK: I - oh, yeah. I mean, it's every single day for me. It's, you know - you've lived with this longer than you've lived without it. I barely remember not being any pain. Let's just do it anyway. Let's get this done.

Ms. THERNSTROM: Well, it's terrific that...

MARK: I mean, I'm in the middle of moving to a different city today. So it's like whatever. Just get it done.

CONAN: Melanie?

Ms. THERNSTROM: It's - yeah. It's terrific that you found a way to, you know, both to accept it - not only to accept it, but it sounds like to actually channel it into your work and to use it in a way that's emotionally positive for you.

MARK: There are still, you know, nights where I won't sleep, and I'll be like, oh man. I really wish this wasn't here. But then I'll realize that, you know, for me it's a sign from God even - it goes that far for me, where God has given this to me and it's just making me a stronger person spiritually. I mean, it's just - this is something that a lot of people don't go through. A lot of people do, obviously, and I've always felt kind of alone here. I've never met someone that's been able to sympathize or empathize or just understand what I go through every day. But, I mean, I - you were talking about...

CONAN: This is - these are...

MARK: ...you know, options for surgery even.

CONAN: Yeah. Well, Mark, you're talking about pain. There's a lot of what you're talking about in the chapters that Melanie Thernstrom writes about pain as metaphor. And it's interesting. And she writes, at some point even anesthesia was once controversial. Pain was often seen as strengthening for the soul. You can read more about that in an excerpt from "The Pain Chronicles" on our website. That's at npr.org, click on TALK OF THE NATION.

Melanie, thanks so very much for being with us today.

Ms. THERNSTROM: Oh, thank you so much for having me. It was really a pleasure.

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