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One hundred million adults in America live with chronic pain, yet only four medical schools require students to take a course on the subject. Judy Foreman draws on her personal experience with chronic pain and her background as an award-winning health journalist to present what she calls a practical plan of action. Her suggestions include enhancing pain education in medical schools, rethinking traditional and alternative treatments and federal policy reform.
Reprinted from A NATION IN PAIN: Healing Our Biggest Health Problem by Judy Foreman with permission from Oxford University Press, Inc. Copyright © Judy Foreman 2014.
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. Judy Foreman is an award-winning syndicated health columnist, but it took an experience with excruciating neck pain to discover one of the nation's most urgent health problems is chronic pain. She spent five years interviewing more than 200 scientists, doctors, lawyers, policy analysts, and patients for a new book titled "A Nation in Pain."
MS. DIANE REHMJudy Foreman joins me in the studio. I know you'll want to be part of the program. Give us a call, 800-433-8850. Send us your email to email@example.com. Follow us on Facebook or send us a tweet. Judy Foreman, it's good to have you here.
MS. JUDY FOREMANThank you so much. It's nice to be here.
REHMAnd before we talk about chronic pain generally, let's talk about yours specifically. What happened? And how did you deal with it?
FOREMANWell, you know, it wasn't clear what happened initially. I was sailing along in life pretty well. And all of a sudden, my neck really kind of went bonkers. It hurt like crazy right at the spot where the neck vertebrae join the back vertebrae. And it felt like acid pouring directly on my nerve from my spine.
FOREMANIt went all the way down to my left shoulder. The acid feeling kind of stopped right there. I didn't have the arm feelings that a lot of people have. But it was excruciating. It felt like acid just pouring onto my nerve.
REHMAnd what did doctors say?
FOREMANWell, I had to go to many different doctors.
FOREMANLike a lot of pain patients, I kind of made the rounds. They finally ordered an MRI, a magnetic resonance imaging scan, which did show arthritis in my spine. It showed something called spondylolisthesis, which is a mouthful, but it basically means the vertebrae are sliding forward over each other. And it also showed bone spurs. So I had a number of things going on. And it was the -- it triggered these incredible muscle spasms in my trapezius muscle, which pulled my head way over to the side. And I would have to use my hands to get my head back upright.
REHMNow, that sounds like torticollis.
FOREMANThat's exactly right. That's exactly right.
REHMAnd so you had your head this way.
FOREMANTipped to the side, and I couldn't get it back except using my hands to sort of force it back.
REHMWow. Did you consider surgery?
FOREMANIt turns out I wasn't a candidate for surgery. My discs were almost herniated, but not quite. So I did a ton of physical therapy, and I'm sure that that's what ultimately got me better. But I also did everything else. I took opioids, which we used to call narcotics, did acupuncture, massage, physical therapy, and just everything I could think of and everything I talk about in the book. And I really think it was the exercise and the physical therapy ultimately that got me better.
REHMThis was really an eye-opening experience for you.
FOREMANYou know, it was. I'm a science writer by trade. And I have -- like many women, I had been through childbirth. And that obviously hurts a lot. This was way beyond anything I had ever experienced. I used to lie there at midnight, thinking, God, I'm a science writer. Why would evolution have come up with this kind of extreme pain? It's not adaptive. It wasn't protecting me in any way.
FOREMANAnd it was totally different from childbirth. You know, with childbirth, it hurts like crazy, but it's clear what's causing it. You know it's going to be time limited. You know you're going to get a baby out of it. And no one doubts you. No one says to you, you know, gee, are you making this up? Is this all in your head? With chronic pain, all those things are different. People don't believe you.
REHMThat's really a -- such an important point. And once you experienced it, did you begin to talk with others who have had the same problems?
FOREMANAbsolutely. I actually -- I was writing on my column for the Boston Globe in those days. And I wrote about my experience with the pain itself and also with the troubles getting any headway in the medical system, and I got such a big response. That's why I decided to write the book because so many people said, I've run into the same roadblocks, doctors not believing me, doctors not knowing what to do, that I -- you know, it was very supportive, but it also encouraged me to go ahead and do the book.
REHMIs that your main issue, that doctors are not sufficiently trained to deal with chronic pain?
FOREMANThere are a couple of main issues. That is one of them. There was a big study in 2011 from Johns Hopkins that looked at 117 medical schools across this country and Canada, and it found that, in four years of medical school, med students get only a median of nine hours of pain education. Even veterinary students get more.
FOREMANSo doctors, as their own surveys show, are totally unprepared to deal with people in pain. And that really has to change because pain is the main reason that people go to doctors in the first place. In fact, it's actually numerically a bigger problem than cancer, diabetes, and heart disease all put together. And yet doctors know almost nothing about how to treat it.
REHMSo how recently was that survey taken?
FOREMANOh, just five or six years ago 'cause they...
REHMYeah. I would wonder whether, with so many of us presenting with issues of pain, whether doctors are sort of trying to change their attitudes.
FOREMANI wish I felt a little more optimistic about that. I don't really. And, in fact, one of the things that I found the most gripping in my research was I talked to a number of doctors who themselves, accidentally, of course, wound up in chronic pain. And they themselves were stunned at how little their fellow physicians knew about treating pain.
FOREMANSo I don't know that it's really getting better because pain still has a big stigma. And here we're talking chronic pain. We're not talking acute pain. And, you know, I don't think the medical establishment has really cottoned onto this very well.
REHMSo how do you believe people who suffer from chronic pain, how do you believe they present themselves? And what are the reactions from doctors?
FOREMANDoctors are frustrated. They see this a lot. They don't know what to do. I also think women have a particular problem presenting to doctors, and we can get into the whole gender differences in chronic pain if you want to. But brain scans have showed that women's limbic system, their part of the brain that deals with emotions, the scans show that the limbic system lights more in women who have pain than in men.
FOREMANSo women are genuinely at a physiological level feeling their pain in a perhaps more emotional way than men. And I think when they present themselves to the doctor with any emotion, doctors get totally turned off. Male and female doctors just -- they have trouble with that.
REHMThey back off.
FOREMANThey back off. They don't know what to do with the emotions, so they don't know what to do with the pain.
REHMBut the -- aren't there more drugs now to deal with pain than there once were?
FOREMANThere are, and, you know, opioids, as everybody knows by now, are a very mixed blessing. For the record, I get no money from any drug companies or anybody else. They're necessary in a lot of cases, but they're not sufficient. People also use NSAIDs, the non-steroidal anti-inflammatories, like Ibuprofen. But those carry their own dangers. Seven to 10,000 people a year die from that. Acetaminophen, which is the main ingredient in Tylenol, a lot of people run into liver problems.
FOREMANIt's very easy to get liver toxicity from acetaminophen, especially if you use alcohol as well. And they're trying to work on drugs that target immune cells because it now appears that some immune cells work with nervous system cells to kind of ramp up the pain syndrome. And so there are drugs in the works or being researched that might target these immune cells as well.
REHMIn the Affordable Care Act, is chronic pain addressed?
FOREMANSomewhat, yes, not enough, from my point of view. It hasn't made it into the national agenda as well as it should. In fact, there was a huge study that Congress actually asked for and paid for that came out in 2011 from the Institute of Medicine, which, as you know, is part of the National Academy of Sciences. And it laid out this whole chronic pain problem brilliantly, but nothing has basically happened with that report. So it hasn't really risen to the nation's consciousness yet. It's not on the radar screen the way it should be.
REHMIt's really hard to describe chronic pain, isn't it?
FOREMANIt's very hard to describe it. Words don't really capture it. And that's part of the problem, is it's so subjective that, you know, if you told me you were in chronic pain right now, I personally would believe you because I've spent five years studying this. But a lot of people wouldn't because you can look fairly normal. There are studies now using, again, brain scanning, FMRI machines, to show that the brain literally changes when the person is in pain.
FOREMANBut that's not yet a diagnostic test, although hopefully someday it will be. But...
REHMWhereas if you have acute pain, is it easier to comprehend and respond to?
FOREMANIf you see somebody in labor or having been -- like, I was watching the Olympics last night. And you can see somebody fall down. You know, you can -- if you see an obvious accident or injury or amputation or something, or if you know the person has cancer, has a tumor, that kind of pain is obvious that the cause is right there. And people don't really doubt that. But chronic pain, I should say, you know, it's really different from acute pain. It's technically defined as pain that lasts three to six months or more.
FOREMANBut that doesn't quite do justice to how it's different from acute pain. Chronic pain is actually -- the nervous system is transformed. It revs up. You know how you learn French or you learn the piano and your brain gets better and better and better at processing all that? Same thing happens with chronic pain. The nervous system learns essentially how to process these sensory signals faster and faster and better and better till it's like a runaway freight train.
REHMJudy Foreman, her new book is titled "A Nation in Pain: Healing Our Biggest Health Problem." I see that our lines are filled, are ready, so that when we come back, we'll try to work in as many of your calls, your comments as we can, 800-433-8850. If you can't get through, send us an email to firstname.lastname@example.org.
REHMWelcome back. Judy Foreman is with me. Her new book is "A Nation in Pain: Healing Our Biggest Health Problem." She's a nationally syndicated health columnist. She's won more than 50 journalism awards. Her columns appear regularly in The Boston Globe, The L.A. Times, Dallas Morning News, and other national newspapers. Here is an email from Brian, who says, "I'm a chronic pain sufferer living in central Florida. I've already had two spinal fusion surgeries. I'm left painful neuropathy down my left leg. As long as I can take pain medications I can live a somewhat normal active life. But for the four months I have been unable to get any of my medications, hydromorphone." Do you know that?
FOREMANYes, I do. And I'm not surprised that this listener is writing from Florida because that state has been, unfortunately, particularly troubled with the whole -- both the chronic pain situation and also the drug situation. There were a lot of so-called pill mills in Florida that were totally unscrupulous. You know, doctors who were just unethically handing out opioids, narcotics willy-nilly. And a lot of abusers went to get them. And the net result has been a crackdown on the pill mills, which is a good thing, but the unintended consequence of that is that real, legitimate pain patients are not able to get the drugs they need. And it's just been totally a crisis in Florida for real pain patients.
REHMAnd you have an older population…
REHM…living in Florida, who may have these kinds of complications. What would you suggest to someone like Brian who cannot get his pain relieving drug?
FOREMANWell, first of all I think he did a good thing by writing into your show because that helps publicize the problem. I mean the basic problem is that legitimate pain patients, who far outnumber abusers, are getting penalized for the actions of abusers. The abusers get all the headlines. We think we have a big narcotics epidemic in the country. And it's actually much smaller than the chronic pain epidemic. So it's like almost two separate populations and the legitimate pain patients are really getting penalized. For this particular person I would sort of suggest going on the web and looking up their number of really good pain organizations.
FOREMANThere's the American Chronic Pain Association. There's the U.S. Pain Foundation. I would suggest calling any sympathetic congressmen or women that he can find.
FOREMANFrom Florida or anywhere else for that matter.
FOREMANAnd obviously, you know, because he really has a right to these drugs, but the other thing is there are a lot of alternative remedies that we can talk about now or later that he might also try.
FOREMANOkay. I have a whole chapter on that. Acupuncture, which I suspect he's tried these things, but if he hasn't it would be worth it. My chapter on alternative medicine is very evidence-based, which means it's chocked full of studies. And initially the acupuncture studies weren't all that favorable, but in the recent couple years a few big studies have come out really showing that acupuncture is much more than just a placebo. It's more…
REHMWhat about chiropractic? A dead friend of mine uses that and swears by it.
FOREMANThat's very typical. You know, if you go to the National Center for Complementary and Alternative Medicine at NIH, their studies show that chiropractic is one of the these most popular treatments for back pain.
REHMIs it effective?
FOREMANThe studies are some -- if you talk to the practitioners, they swear by it. And the patients who love it, love it. The studies are a bit more mixed. And some of the studies are hard to interpret because they do chiropractic plus exercise, or chiropractic plus physical therapy. So it's hard to exactly tease out what the chiropractic per say is doing.
REHMSo, Judy, it comes down to what works for you.
FOREMANYes. And I would say, you know, a multiplicity of attacks really work. I mean, basically I think doing everything, exercise might help this person who wrote in. In fact, that's kind of the magic bullet for a lot of people. Acupuncture, massage, physical therapy, there aren't too many dietary interventions that can help, unfortunately. Psychotherapy, physical therapy, occupational therapy. I think if you sort of throw the book at it, if each thing works 5 or 10 percent it can help. And also I have a whole chapter on marijuana, which is kind of an unsung hero in this. It's much safer than opioids and safer than alcohol. And it seems as though it may have a synergistic effect with opioids, meaning that if you take marijuana plus opioids you can take fewer of the opioids.
REHMNow, he talks about hydromorphone. Would marijuana help there as a substitute, medical marijuana?
FOREMANYou know what, I just have to say, I am not a doctor.
FOREMANBut I would, if I were in his shoes, I would give it a try, but he might want to taper off the other, the opioid first because you don't want to get into a big withdrawal syndrome. And tapering off of opioids is not a piece of cake, but in general the rule of thumb is to decrease by 10 percent a week. Which is a slow taper.
REHMHere's an interesting email from Theresa, who's 25 and began experiencing chronic pain when she was 11. As a child, she said she could hardly describe her pain. The doctors told her mother she should seek psychiatric help. She says she still remembers the day a wonderful doctor at Children's Hospital called to tell her they had found a fracture in her spine. She said, "I was so relieved to know I wasn't crazy." She'd love to hear your thoughts on a doctor's response that if they can't find the problem, there must not be one.
FOREMANMy heart goes out to her. And I got dissed by a doctor, too, as if I had psychiatric problems. I mean it's just appalling. That's what happens. When doctors don't know what to do they say go see a shrink. Now, I happen to be married to a shrink and I'm very in favor of shrinks. And it can help because pain actually triggers depression in a lot of people. And getting some psychotherapy for that can be very useful. But for doctors to say, you know, I don't believe you, it's all in your head -- every single pain patient I talked to has been told that. And it's just a travesty.
REHMYou know, about five years ago I was rushing somewhere, got my heel caught in the hem of my trousers, landed flat in the street, and could not get up. Somebody helped me to my car. I drove home. My husband, all the while, on the phone insisting that I go straight to the hospital, but anyhow, got to the hospital and lay there for seven hours. They took an x-ray and finally came to me at about, I guess, 10:00 o'clock at night and said, "Can't find anything. You should go home." And I said, "Well, I would if I could walk." One smart doctor said, "If the x-ray didn't show anything maybe an MRI will." They found three fractures in my pelvis. So that -- you know, sometimes you've got to look a little harder.
FOREMANOh, yes. Yes. And the other thing about x-rays and stuff for backs in particular, it's crazy. Because some people -- I had a back surgeon tell me that some people's MRIs and x-rays look perfect and the person is writhing in pain. You know, it doesn't show up. And other people feel fine and their back is a mess on the x-ray, but they don't feel pain. So there's not a strong correlation. The other thing is a lot of these chronic pain syndromes, they're sort of called functional pain syndromes. And the cause may never be found, but the pain is real.
REHMAll right. We've got lots of callers. I'm going to open the phones, first to West Bloomfield, Mich. Hi there, Peter.
PETERHello, Diane. Glad to be able to speak with you.
PETERI've been suffering chronic pain -- that eventually was diagnosed as osteoporosis -- for about 50 years.
PETERRecently I had shoulder replacement surgery. During that surgery and afterwards I was given heavy doses of morphine and narcotic drugs. I am one of the few people who react negatively to morphine and narcotic-like drugs.
REHMSo do I, Peter.
PETERI react the opposite way. And the doctors threw up their hands. They were totally baffled. They had no idea what to do except to try a different type of narcotic drug. Finally I had to deal with it myself and…
REHMHow did you do that, Peter?
PETERWell, I had been taking a drug called tramadol. And that drug mimics narcotic procedure, but it isn't an actual narcotic.
PETERI was taking it in low doses and I gradually, by taking one-quarter tablet at a time, gradually worked up enough of it so that it was helping me get through the day.
REHMI'm so glad for that. What do you think of that, Judy?
FOREMANWell, you know, I don't know if this is what you had, but there is a phenomenon that is sort of a mouthful of words, but it's called opioid induced hyperalgesia, which means extra pain caused by the very opioids that people are taking. It's unclear how common this is, but it's more common than people think. And obviously people are taking opioids to get rid of the pain. And then if they get more pain, the usual response by doctors, better give them more. And it sort of triggers this whole cycle. It's terrible. But I'm glad you're better.
REHMJudy Foreman, the book, "A Nation in Pain." And you're listening to "The Diane Rehm show." And we'll go now to Louisville, Ky. Hi there, Cynthia.
CYNTHIAHi. Thanks so much for taking my call.
CYNTHIAI finished my PhD in 2010, and about three months after that started having excruciating shoulder and arm pain. I ended up over the next nine months having four cervical discs replaced because of the bulging discs. And I found out my surgeon was a great surgeon, but he was not good at helping me with the pain that resulted. I still had a lot of neurological pain after the surgery. And I felt like he just -- I had to support his ego instead of getting him to help me. It's like I was a bad patient because I didn't get better. And the person I found, after some looking, that has been the most helpful to me was a physiatrist.
CYNTHIAHe's a rehabilitation doctor who deals in chronic pain. And what he taught me was I have a tool box, like you've talked about, of all kinds of different modalities. You know, heat and cold. I do a lot of water therapy. About five times a week I do go do water therapy. And he, of all the doctors I talked to, was the one who really understands the nature of chronic pain and made me understand that what I was experiencing was real. It's myofascial pain syndrome. It's where the nerves still feel like they're damaged even though they're not anymore. It's a nerve memory.
REHMSo how are you feeling now, Cynthia?
CYNTHIAI'm a functional chronic pain patient. You know a lot of days I can do what I need to do, some days I stay in bed all day.
CYNTHIAAnd that's hard to explain to people. And I've not been able to go back to teaching in English, after I finished my PhD because working on a computer is very, very hard.
CYNTHIAThe angle I have to hold my arm is about impossible.
REHMOh, I'm so sorry. Wow, Judy, that's sound like…
FOREMANYeah, I can totally identify because I think it was a physiatrist that actually kind of -- I went to him about six months ago just to sort of check in. And I said, you cured me. And he said, no, you cured yourself because you did the exercises. I mean I think the water aerobics or the water therapy that you're doing is probably crucial to how you're going to get better. And I would guess -- and I hope -- that you continue to get better, because that is totally what got me better. And they don't totally understand why, but I think the exercise kind of desensitizes the nervous system that had gotten overly sensitized as pain became its chronic disease.
REHMDo you think some of us are more susceptible than others to pain?
FOREMANI know some of us are more susceptible than others. And I don't mean to sound arrogant, but that is based on human and animal studies. There's a whole chapter in the book on genetics and pain. There are about 12 to 15 genes that seem to either ramp or slow down a person's response to pain. And this is in twin studies in humans and in rat studies up at McGill University. Basically the bottom line is that probably 40 to 50 percent of a person's susceptibility to pain and sensitivity to pain is inherited, which I think is a good thing, in the sense that once again it shows it's not all in your head. Your genes have a huge influence on how susceptible you are.
REHMLet's go to Richmond, Va. Hi there, Steve.
STEVEHi. How are you, Diane?
REHMI'm good. Thank you, sir.
STEVEThat's good. I've got my 15-year chronic pain survivor -- and I say survivor because it's very true. There are a lot of people who just give up and either do themselves in or die from pain. And people don't understand that you can be a functionally opioid user. I've been through a very strange path of going from everything from OxyContin to Fentanyl to finally a doctor who's actually a medical acupuncturist. And we use the acupuncture, along with a long-acting morphine sulfate drug and Valium. I've had three back surgeries.
STEVEI'm fused from -- I have six lumbar vertebra instead of five. And I have what's called -- and the author ought to know this -- I have a spondylolisthesis stenosis and spondylosis, which sounds like it's from the "Wizard of Oz." It's a real affliction.
FOREMANOh, yes, it is. You know you sort of said some people do themselves in with chronic pain. I'm glad you mentioned that because people think of chronic pain as mainly a quality of life thing. And that's hugely important because your quality of life can shrink to zero if you have really bad chronic pain. But it also is a life-threatening thing because the risk of suicide for people with chronic pain is twice that for people without pain.
REHMJudy Foreman, her new book is titled, "A Nation in Pain: Healing Our Biggest Health Problem." Short break here. And when we come back, more calls, more email. I look forward to speaking with you.
REHMJudy Foreman is my guest. She's a health columnist. Her column appears in the Boston Globe and elsewhere. Now she's written a book all about chronic pain and the book is titled "A Nation in Pain: Healing our Biggest Health Problem." Do you truly believe it's our biggest?
FOREMANYes, I do. The numbers sort of show that. It's a bigger problem than heart disease, cancer and diabetes all combined. So yes, it is. And it is -- it gets the least funding at National Institutes of Health. There's a big mismatch in terms of what money gets spent on it compared to other diseases.
REHMHere's an email from Rebecca. She says, "I'm not denying people need medication sometimes to deal with the pain. There are times medication is masking the root of the pain and causing further damage. It's often a combination of emotional, psychological as well as a physical component. Unless they're all addressed, often healing never happens. Then the whole addiction to medications problem becomes an issue."
FOREMANWell, there's sort of a lot of implied questions in that comment. Yes. There's a big overlap between chronic pain and depression. And historically people thought that depression came first and sometimes it does. And it does make you more susceptible to chronic pain. But by and large it goes the other way, that it's the pain that comes first and then the depression. And the bottom line in terms of treatment is you have to treat both because antidepressants can help with depression but they do some against pain but not that much.
FOREMANIn terms of healing, you know, we don't want to slip into that, you know, it's all in your mind that we -- there's kind of a fine line with all this. And in terms of the medications being addicting, I mean, that's a whole couple chapters in my book. Opioids can be but a lot of times people become dependent on them, which is different from addiction. And in essence it's almost as though there are two different populations. There's the legitimate pain patients who may need the opioids and then there's the abusers. And by and large the pain patients themselves aren't abusers and don't become addicted.
REHMHere's an email from Melissa in New Hampshire. "One of the biggest difficulties with chronic pain is that many people don't know about it or don't believe it exists. I was wondering if you had perhaps any advice on how to properly explain this disease so people can better understand it.
FOREMANYeah, that's the -- in some ways that's the biggest problem that pain patients have is not being believed. I sort of -- I spent two chapters in the book writing about the biology of pain just to sort of -- to explain it for one thing, but also to make the point that it really is real. I mean, chronic pain is now known to be a disease of the nervous system itself. It's a transformation of the nervous system so that, you know, the slightest touch feels to the chronic pain patient like a blowtorch.
FOREMANI mean, one of the doctors makes an analogy with stroking your skin with a feather but to a chronic pain patient that feels like a blowtorch because the nervous system is so revved up around the pain. But that's hard to show. Brain scans do show that the brain itself is changed by pain, but that's not a diagnostic test yet. But there have been some interesting studies showing what happens in the brain to someone with chronic pain. The amount of brain tissue lost is about 5 to 11 percent. And that's equivalent to 20 years of aging.
FOREMANSo they have shown this on brain scans that chronic pain literally, physiologically changes the brain, damages the brain.
REHMHere's Christina who said, "I'm curious as to whether you have comments on the growing number of chronic pain clinics popping up around the U.S. For example, Grand Rapids, Mich. has Michigan Pain consultants which only deals with and helps with chronic pain patients.
FOREMANYeah, that's a tricky one because there's kind of a segment of medicine, you know, pejoratively called needle jockeys, doctor who just do a lot of injections for pain. Sometimes that's a good thing, sometimes it's not. There's only about 4,000 doctors who are trained and certified as pain management specialists, which is not nearly enough to cope with the...
REHMAnd where can you find those doctors?
FOREMANI would suggest basically -- and people don't always live in the right place for this, but going to the nearest, you know, major teaching hospital. Obviously those are in the big cities so it's harder for people in rural areas. But the really good places tend to have a whole array of choices. They do have injections if that's what you need, but the injections are sort of overrated and probably for some people overused. You need to have places that also offer acupuncture, massage, sort of psychotherapy, the physical therapy, kind of the whole gamut of things.
REHMAnd one last email from Kate, "Please speak to the issue of chronic pain in senior citizens and the apparent reluctance of doctors to order diagnostic tests to distinctly diagnose pain generators in seniors as opposed to blindly prescribing either nondescript, untargeted physical therapy or drugs."
FOREMANYeah, I mean, you know, that 100-million-Americans-living-in-chronic-pain figure, which comes from the Institute of Medicine report, that doesn't even count people in nursing homes. So I'm sure that that's really an underestimate, that there are many more seniors living in chronic pain than we even know about. It's tricky to treat people like that because they often have other diseases as well. There's more of a danger of overmedicating older people because they process the drugs in a different way than younger people. But on the other hand, you don't want their pain to go untreated.
FOREMANSo I think the same thing is true in the sense of people have to be persistent or their advocates have to be persistent in trying to get a whole range of treatments.
REHMAll right. Let's go to Louisville, Ky. Hi, Joe.
JOEHi, Diane. Another great topic and another great guest.
JOEYeah, you all touched briefly on a couple of the things I was going to mention, the depression being one of them. You know, as you progress with this chronic pain disease, you know, you finally -- you lose the social life, you lose your work life. I've been out for quite some years now from low back pain and other issues, been through the gamut with the physiatrist and all those people. I had a double knee replacement because they said -- of course, it was a shot, but I had it done to relieve the low back pain. The physiatrist assured me that that was my problem. Of course, that was ridiculous. My vertebrae is stacked like pancakes.
JOEBut the depression that evolves afterwards -- and I've been -- I'm not on opiates. I've been through the Neurontin and all those. You make a choice. You're going to be in pain or you're going to live in kind of a hazy lifestyle. And I chose just to kind of have that pain. And you just learn to deal with it after a while, but it depresses you. It withdrawals you from your social life because you can't stand up for a while, you can't sit down for a while. It hurts to lay down for a while. So you're just kind of in a spin. And then you just -- you know, you kind of lose friends and you lose contacts and it's just a miserable lifestyle.
JOEAnd again, you don't want to go through life on drugs.
FOREMANYeah, you know, you make a really good point. One of the women in my book who's since become a friend had a whole bunch of filing cabinets fall over her at work about 15 years ago. She is in terrible chronic pain and she -- but she manages her life kind of like it sounds like you do. She can only be upright sitting or standing for an hour at a time. Then she has to lie down for 20 minutes. Then she's back and forth all day long.
FOREMANWhen she flies she buys to seats in the plane so she can lie down there. She emailed me yesterday from a museum. She was lying on a bench while her husband walked around the museum. She has learned to cope by doing what she has to do to manage the pain. the other thing that I think -- you didn't mention but I think can be incredibly helpful is a pain support group. Talking with other people who do believe your pain and know what you're going through and treating the depression as aggressively as you can with psychotherapy, group therapy. I mean, having people believe you really, really helps a lot.
REHMBut think about all the money that costs.
FOREMANWell, a lot of pain support groups are free. You know, talking to other patients doesn't usually cost any money. But psychotherapy, you're right, does.
FOREMANAnd I just -- you know, you remind me of something I heard. The doctor who was head of this Institute of Medicine committee, a wonderful man named Philip Pizzo, was also dean at Stanford, he wound up with chronic pain and also got depressed.
REHMJudy Foreman. Her book is titled "A Nation in Pain" and you're listening to "The Diane Rehm Show." And let's see, let's go to John in Cranberry Township, Penn. That sounds like a good place to live, John.
JOHNWell, it's been a great place. I'm actually transplanted here by a job from Gray Eagle, Calf. So I get a good sampling of both sides of the nation.
JOHNAnd I must say that your show is a national treasure.
REHMOh, thank you so much. Tell us about your concerns.
JOHNWell, there -- I was diagnosed with CMT, the Charcot-Marie-Tooth disease which is about degenerating nerve disease. And it causes neuropathies primarily in my legs which are more or less going away. But it -- the pain that is associated with just nerve issues such as neuropathies, the burning, you know, sometimes it's -- a lot of times it just feels like you stick your toe in a light socket, and the shooting up and down through the legs. And associated maladies such as restless legs, which is a disgusting feeling. It's like spiders crawling under your skin.
JOHNThese are all kind of starting to be addressed as pain and, you know, being treated with a cocktail of different things from Neurontin to Ropinirole to Hydrocodone.
REHMAnd anything helped, John?
JOHNThe combination of all of it.
JOHNSo when you get behind it more or less, that type of a pain, you know, then you have to catch up with it. And it's just a different type -- I've had back injuries and I know about that type of pain which is there all the time. But the other is something that really can't be addressed or corrected with -- by anything other than medication.
FOREMANBut you make a really good point about you can't get behind it. In general with pain, staying ahead of it...
FOREMAN...is huge because, as you say, otherwise you're catching up. And it sounds like you've gotten really good at kind of titrating your meds to kind of stay ahead of it, but also being able to do your life. That's so big because people -- often pain patients under medicate themselves because they're scared of the drugs.
REHMVery scary, yeah.
FOREMANAnd then they get behind and the pain gets ahead of them. So it sounds like you're doing the right thing.
REHMSo what you're saying by staying ahead of the pain is don't wait until it comes on if you're on a regular regimen, but trying to ensure you stay out in front.
FOREMANRight. And it kind of means paying attention, which pain has a way of making you do anyway. But, yeah, you know, taking -- you seem to have -- and it sounds like you're doing it, right. And other people could learn from what you're doing. You know, you know it works. You know when you have to take the drugs and just kind of taking them on time and being responsible. And, in fact, most pain patients do do what you're doing. They take their meds. They do not become tolerant. They do not keep upping their doses . They take them in a very responsible way.
REHMDo you think the risk of addiction is actually over stated?
FOREMANYes. In a word, absolutely yes. Absolutely yes. For people with no family or personal history of substance abuse or alcohol abuse, for real pain patients, the risk is less than 1 percent. And -- but we -- all the newspaper stories, all the TV stories always play up the abusers who overdose, not the pain patients who take the drugs responsibly.
REHMSo many of these drugs that do help are now under severe restriction. What does that mean for the patients? What does it mean for the doctors?
FOREMANIt means a nightmare for both. It means the patients can't get the drugs that they -- let's assume they really do need them. They can't -- they have much more trouble getting them. And doctors are basically terrified of prescribing them and they also don't know often how to prescribe them right. Doctors are very afraid of getting their licenses taken away, of the Drug Enforcement Administration coming down on them.
FOREMANAnd, I mean, the net result is everything is shrinking away from these drugs. And pain patients are left, particularly in places like Florida, as one of our earlier callers said, going from drugstore to drugstore, meeting all these obstacles trying to get the meds that they really need. So it has really been a nightmare for people.
REHMSo what do you think a patient who is experiencing chronic pain of whatever type, what would you say to that person?
FOREMANI would basically say, don't give up until you find a doctor who believes you and who is willing to prescribe medications, if that's what you need, and willing to trade off playing with -- not playing, but using different medications until you get the right formula. And for trying other things non-pharmacological solutions as well, nondrug, things like acupuncture, massage...
REHM...acupuncture, physical therapy, massage.
FOREMAN...joining a group of pain patients, etcetera.
REHMI certainly hope that the Affordable Care Act will indeed begin to cover some of these treatments because we all know they're necessary.
REHMFinally, Emily Dickinson apparently described chronic pain perfectly. Here's what she wrote. "Pain has an element of blank. It cannot recollect when it began or if there were a day when it was not. It has no future but itself. Its infinite realms contain its past enlightened to perceive new periods of pain." Quite a description by Emily Dickinson. Judy Foreman, thank you so much for being here.
REHMHer book is titled "A Nation in Pain: Healing Our Biggest Health Problem." Thanks for listening all. I'm Diane Rehm.
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