Conquering Chronic Pain: One Woman's Journey

What is it like to live with daily chronic pain? Melanie Thernstrom knows too well. She mysteriously suffered for years – and tried many remedies like massage, heat and yoga – before really learning how to manage it. In this exinterview, Thernstrom shares her discoveries... We’ve all felt the pounding of a headache, the searing clutch of a muscle spasm, the ache of an overworked knee. Usually, the hurt passes. But for more than 70 million Americans like Melanie Thernstrom, pain is a daily, debilitating part of life. She was young, fit and apparently healthy when she suddenly developed a chronic ache in her neck and shoulder. It took years of tests, doctors’ visits and alternative therapies before Thernstrom found its cause – in her case, arthritis. In her search for answers, Thernstrom, a journalist and writer for the New York Times Magazine, wrote a book about her journey, The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering (Farrar, Straus and Giroux). Along the way, she made some startling discoveries. For example, chronic pain is now understood to be a disease itself, Thernstrom says. And it’s a dangerous one, altering the nervous system and causing the brain to atrophy twice as fast as normal aging does. In this exclusive Lifescript interview, the 46-year-old Thernstrom reveals her eye-opening findings and shares how she learned to manage her pain. When did you first experience chronic pain? Almost 14 years ago, I went swimming across a pond with a boyfriend. That night I was kept awake by a strange burning sensation in my neck and shoulder. There was no obvious reason for it – I hadn’t injured myself. How did you handle it? I tried wishing it away. I didn’t want to have pain, and didn’t understand why I had it. I kept thinking that maybe it was psychological and would go away if I ignored it. But it got worse? Yes, I was really despairing. I tried meditation, hypnosis, massage, heat, yoga. All these helped a little, but none were cures. Did you take painkillers? I took Advil and Tylenol, but because the recommended doses didn’t [relieve] my pain that much, I took vast quantities – and mixed them with alcohol. I had the extremely mistaken impression that if a drug is over-the-counter, it’s harmless. I didn’t know then how dangerous those drugs are to the kidney, liver and stomach. People die each year of gastrointestinal bleeding and other problems caused by them. Did you see a doctor? A couple. I got diagnoses of things like cervical [neck] strain and rotator cuff [shoulder] problems. It was two years before I finally went for an MRI [magnetic resonance imaging] and found out that I actually had arthritis. How did you feel about the diagnosis? Very depressed. People [in chronic pain] always talk about the frustration of not having a diagnosis, about how doctors don’t believe them and that they don’t have a name [for] their suffering. But there’s a different kind of sadness in being given a diagnosis that doesn’t have a cure. At the time, I [thought], There’s no hope. It’s a degenerative condition; I’ll have more and more pain. But that’s not true. Even though you can’t treat the underlying condition, you can treat the pain and feel better. What happened after you were diagnosed? I was passive and despairing. I didn’t start active treatment until – by coincidence – I got an assignment to write an article about chronic pain. I began researching pain treatment and discovered that it could work. What did you learn? I observed hundreds of [people] at pain clinics around the country. I wanted to find out who got better and who didn’t. I saw that a small percentage was totally cured, and a small percentage got dramatically worse. One patient even committed suicide. But most were in between. I realized that it’s crucial to bring pain down to a manageable level. If it’s the first thing – the only thing – on someone’s mind, life becomes unbearable. What can we learn from the patients who ultimately got better? They didn’t give up. Sometimes people saw 79 doctors, and then the 80th doctor helped. You describe a dramatic case of one woman injured by a trainer at her gym. She was in terrible pain for eight years, and got almost completely cured. She did an intense form of physical rehabilitation and basically rebuilt her body by doing a full-time exercise program. It was a great reminder that no one should give up. Even someone like that – a woman completely reconciled to the idea that she’d have pain for the rest of her life – managed to find a treatment that worked. How do people typically deal with persistent pain? Often, they don’t even try the most obvious treatments, like physical therapy or an anti-inflammatory drug. They try something that isn’t recommended for the problem, and get discouraged. Or, they might try an alternative treatment that doesn’t have evidence behind it. Then they give up. How do primary-care physicians deal with pain complaints? They don’t want to hear it. They have big workloads, scheduling patients for 10 minutes, and they say chronic patients just take up too much time and ruin their day. What did you learn about the nature of chronic pain? Chronic pain is different – it really has a life of its own. Scientists have discovered that persistent pain causes pathological changes. The analogy that’s often used is of a river carving its way into a canyon – it makes a deeper and deeper path over time and changes the landscape. What kinds of changes? The biggest surprise for me is that chronic pain rewires the brain and spinal cord. A lot of research shows that the whole system revs up and becomes geared toward generating more pain. Over time, the pain nerves recruit other nerves into their service. The more the body transmits pain signals, the more efficient those neuropathways become. If people knew that, they would be much more aggressive about treating pain early. How early? Isn’t chronic pain defined as something you’ve had for a while? If a person has suffered from continuous pain for more than six months, it’s considered chronic. But if it doesn’t go away in three months, see a pain specialist or a physical therapist. The reality is that some pain is probably chronic right from the beginning, whereas other pain will naturally resolve itself, even if you have no treatment. But we don’t know how to reliably distinguish the two kinds, so both need to be treated aggressively. How do you pick a pain specialist? Lots of health-care professionals say they specialize in pain. I’m sure each one can help a certain kind of person. But to get the right diagnosis and have a range of treatment options, go to a board-certified pain specialist. [The American Board of Medical Specialties recognizes certification in pain medicine by the American Board of Anesthesiology, the American Board of Physical Medicine and Rehabilitation, and the American Board of Psychiatry and Neurology.] Do women suffer disproportionately from chronic pain? I [once] had the impression that women were less sensitive because they have to bear the pain of childbirth. But that turns out not to be true. Research has shown that they’re more sensitive in laboratory tests and more vulnerable to diseases that cause chronic pain – such as fibromyalgia, migraines and autoimmune diseases like rheumatoid arthritis. So, are pain clinics filled with women? There are disturbing studies showing that women have much more trouble than men getting treatment. They’re more likely to have pain dismissed as a psychological problem. They’re more likely to be referred for counseling, and less likely to be prescribed opiates. Minorities also are much more likely to have pain dismissed. Should patients be worried about taking opiates such as Vicodin and OxyContin? While the potential for addiction is real, it’s often overplayed in the media. Studies have shown that less than 1% of chronic pain patients with no history of addiction become addicted during long-term opiate use. I saw elderly women with cancer who were in a great deal of pain and afraid to take opiates because they were afraid they’d become addicted. That makes no sense. On the other hand, we also have this myth about the power of opiates. In fact, they’re not that effective against nerve-related pain, so they’re not a good solution for chronic pain. And they have many side effects. People imagine the experience of taking opiates is pleasant. Like many patients, I found it very unpleasant. Why? They made me feel out of it, unable to concentrate and work. It’s like having a strong drink in the middle of the day. What are the most promising avenues in pain research? Brain research is hot. Imaging studies are showing the brain circuitry that becomes active with pain, and that will lead to an ability to control it. Clifford Woolf [a professor in neurology and neurobiology at F.M. Kirby Neurobiology Center at Children’s Hospital in Boston] and his collaborators recently reported a really interesting finding: a gene that makes people predisposed to chronic pain. Genetics will answer one of the big mysteries of chronic pain – why does one person develop it when someone else doesn’t? There are people whose MRIs show significant problems who feel fine, and there are others who have normal films whose lives are besieged by pain. What finally eased your suffering? No one slam-dunk treatment. [It was] really good physical therapy in combination with anti-inflammatory drugs, steroid injections and Botox. Where’s the Botox injected? I have pain on the right side of my face, neck and shoulder. The Botox is injected in all those points, and behind my ears and the side of my head. It really seems to help. You resisted physical therapy for a long time. I thought it seemed really boring, but it turned out to be the most effective treatment for me. How do your neck and shoulder feel now? I’d say medium. I definitely have pain all the time, but I’m not thinking about it all the time. Is your movement restricted? I have 14-month-old twins who need to be picked up many times a day. That’s very difficult. Is it hard on your back? I never had lower back pain, and recently I recently started getting it. I can’t wait till my kids learn to get in and out of their high chairs and car seats themselves. How Bad Is Your Back Pain? So your back hurts? Take our back pain quiz to see how severe it really is. You may need to see a doctor but have just been avoiding it thinking it will get better. On the other hand, your back pain may be more normal than you suspect.