My mother doesn’t believe in migraines. Or fibromyalgia. Or any other nebulous condition for which there is no clearly visible physical sign. And should any of them come up in conversation, they’re quickly dismissed with a snorted “What nonsense.” To believe pain is truly present, my mother needs an affliction she can see — like the arthritis that swells and knots her knuckles after an afternoon in the garden. Now that’s a pain she can believe in.
As with so many things in life — melting glaciers as a sign of climate change, Barack Obama’s birth certificate as proof of his citizenship — seeing is believing. Which poses a problem for the seven million (that’s one in five) Canadians who endure chronic pain every day, all day. No one believes them. Not their friends, their family, their coworkers; not even their doctors. Without a visual cue — like an eye patch, say, or a cast or cane — pain is invisible. Researchers at the University of New Brunswick discovered that no matter how much you’re suffering, you’ll get better care if you hobble into your doctor’s office leaning on a cane. This fact frustrates Dr. Mary Lynch, director of the Pain Management Unit at the QEII Health Sciences Centre in Halifax.
“In Canada, pain is under-recognized and under-treated,” Lynch says. “And that’s all pain, whether it’s due to trauma, surgery, illness or disease. It includes pain in the community, in our hospitals and in our emergency rooms — it’s a huge problem.” And it’s a problem that has a lot to do with how easy it is to dismiss a condition we can’t see. A nationwide survey by the Canadian Pain Coalition found 53 percent of us don’t believe chronic pain exists. On the other hand, an Angus Reid Poll found 70 percent of us believe that there is intelligent life on other planets (and 54 percent think extraterrestrials have already paid us a visit). So…aliens from outer space? Sure. Chronic pain? No way.
What all this means is pain doesn’t get the attention it deserves when it comes to researching new treatments or educating doctors about how to deal with it. Here’s a favourite stat from the country’s top pain experts: Veterinarians in Canada get five times (the “five” is always emphasized) more training in pain management than family physicians do. Good news for our four-legged friends, but bad news for us, considering pain is the most common reason Canadians go to the doctor and is responsible for 78 percent of our trips to the ER. As a result, it’s costing us $60 billion a year in health care expenses and lost productivity.
Then there’s the personal cost of being in perpetual pain. Studies show chronic-pain sufferers have a worse quality of life than people with other chronic illnesses, including lung and heart disease. “Pain can wreck a person’s life,” says Lynch. “They can’t function, they can’t work, they lose relationships and become socially isolated and depressed. Many start to wonder whether life is worth living.” The suicide rate is double for those in chronic pain compared with the average person. “Most doctors know patients who have killed themselves due to pain, and I’m no exception,” Lynch says.
The situation is so dire that all the staff at her pain clinic are trained in crisis management because they field so many calls from desperate people. Yet, Lynch says, it’s surprising how difficult it is to change attitudes. “If you’re not experiencing chronic pain or haven’t seen someone you love go through it, it’s harder to understand,” she says. And all too often, chronic pain is seem simply as a symptom of something else, when it’s actually a disease unto itself.
Good pain vs. Bad pain
When you look at pain from an evolutionary perspective, it does serve a purpose, days Diane LaChapelle, associate professor of psychology at the University of New Brunswick. “It can be a sign of damage, a warning mechanism that you need to do something.” This is acute pain — the kind you get when you stub your toe or sprain your ankle. (Incidentally, researchers in the U.K. found swearing actually does help in those situations — a few choice curse words can boost pain tolerance, especially for those not normally prone to profanity.) Acute pain tends to be as short-lived as the injury that caused it, although if it isn’t managed properly, it can become chronic.
“With chronic pain, the warning system goes awry, and the pain signal doesn’t stop,” says LaChapelle. “Your brain sends the same information about pain even after your body has healed.” Chronic pain can be caused by an injury infection or disease. And it can happen to anyone at any time. The Institute of Medicine in the U.S. identified childbirth as a common source of chronic pain: 18 percent of women who deliver by Caesarean and 10 percent who deliver vaginally are still in pain a year later.
How stereotypes are hurting us
Most of us who have only ever experienced temporary acute pain can’t imagine what it would be like if it didn’t go away. But we’ve been taught that it’s possible to “push through pain” and that pain is something that can and should be overcome. No pain, no gain, after all. Athletes are good examples of people who’ve been conditioned to believe pain is something you can defeat if you try hard enough. When Canadian triathlete Paula Findlay suffered a labral tear in her right hip in July 2011, she opted for injections to “manage” her pain instead of surgery to repair the tear. The 23-year-old, who ranked number 1 in her sport, wrote in her blog that she had decided the battle was a mental one. Her mantra was “Never, never, never give up” (courtesy of Winston Churchill). So she didn’t. And the whole world saw the heartbreaking result at the 2012 Summer Olympics.
After struggling through the swim portion of the race, Findlay lagged behind on her bike. By the time she started running, it was clear she was hurting — but her team doctor convinced her to finish. The world watched as she stumbled back onto the track with her mouth twisted and tears trickling from beneath her sporty red shades. In her post-Olympics blog entry Findlay wrote, “I ran three of the most painful, embarrassing laps ever, being lapped [in] the race that I was supposed to be a contender in, humiliated and screaming at myself inside.” Worse still, when it was all over, she felt she had to apologize for not bringing home a medal.
“There’s a tremendous guilt that comes with pain,” LaChappelle says. “If you say, ‘Oh, I can’t do that because of the pain,’ you’re not taken seriously.” The consensus among many of Findlay’s teammates and members of the media (who nonetheless admired her “grit”) was that she never should have been in London in the first place. She was a victim of the belief you can beat out pain mentally, pushed by doctors and trainers who felt the same way. And the fact she looks young, healthy and attractive probably didn’t help. There are many stereotypes that affect how people with pain are perceived, and they often influence treatment, LaChapelle says. In her research, she discovered that the more attractive and healthier you appear, the more discounted your pain is. “It’s just not seen as having as much impact,” she says. “People think, ‘How much can it really be affecting you when you look okay?'”
You’re also at a clinical disadvantage if you happen to be a woman. In one study, LaChapelle discovered health care professionals feel more anger and annoyance when female patients complain about pain, whereas men elicit greater sympathy. “The stereotype is that men are more stoic and stronger than women, so if they complain, it must be really bad.” You can see the outcome of these attitudes in pain treatment, too, she says, because men are more often prescribed pain medications, like opioids, while women are given psychological meds, like sedatives, for the same condition. This is especially irritating considering that new research from Stanford University found women feel pain more intensely than men (women’s pain levels are 20 percent higher overall). So basically the message is women feel it more but should complain about it less.
Why your doctor can’t help you
The first place people head when something’s hurting is to their doctor’s office. Unfortunately, pain isn’t easily pinpointed with a few medical tests. “The main tool we have to diagnose pain is history, meaning what patients tell us,” Lynch says. If you’re lucky, your doctor will be immune to prevailing stereotypes and will be well versed in pain management, but most aren’t. “People ask me, ‘How can this be? Aren’t health care professionals trained to treat pain?'” says Lynch. “The answer is no.” Medical students might get a few hours of pain education at most, and since pain questions seldom crop up on licensing exams, there’s little incentive to pay attention in class. In which case your only hope is to be immediately referred to one of the country’s scarce pain clinics (only 270 nationwide), since the longer pain goes untreated, the harder it is to fix. A more likely scenario: You’ll be bounced around to several doctors, told there’s no physical reason for your pain and that it’s all in your head, before your name finally gets tacked on the bottom of a one- to two-year wait-list to see a pain specialist.
The wait-list at the Wasser Pain Management Centre at Mount Sinai Hospital in Toronto is four to six months, which is pretty good, all things considered, says the centre’s director and clinical neurologist, Dr. Allan Gordon. “We see people when their GPs realize their problem is beyond their level of comfort,” he says. Like most pain clinics, the Wasser centre takes a multidisciplinary approach with specialists including an on-site psychiatrist, dentist, sex therapist and gynecologist.
“I look at this as being a pain enterprise,” Gordon says, leading the way down the clinic’s long, nondescript corridor past several closed doors. Behind each is a room devoted to a different aspect of pain management. “We’re one of the few clinics in North America to have a gynecologist,” he says proudly. (About 15 percent of his patients arrive with chronic sexual pain disorders, such as endometriosis.)
We wind up in the clinic’s pain-fighting epicentre, Gordon’s office. He drops into a rolling chair, combs a hand through wiry dark hair and swivels gently back and forth while explaining why an interdisciplinary approach is the key to pain management. “Ten years ago, we just had everyone on meds,” he says. “Now, that’s just one part of a larger approach. We’ve learned that to treat pain holistically, we have to address both the physical and the psychological symptoms.” This means understanding how pain affects everything from movement and mood to sleep and sex, then brings in a diverse team of experts to tackle each area.
Giving pain patients access to alternatives to conventional drug treatments is more important than ever in light of the current controversy over prescription painkillers. When Canadians were identified as among the highest users of prescription opioids in the world, there was panic. OxyContin (also known as “hillbilly heroin”) was outlawed from prescription pads last March, but many pain experts argue that getting rid of the drug won’t solve the problem because addicts will simply resort to less-controlled, but potentially more harmful, opioids.
In the United States, OxyContin has already been replaced by heroin as the average addict’s drug of choice. “OxyContin was the most commonly prescribed painkiller on the market, but when it became a street drug, it left a huge void for pain patients,” Gordon says. “The biggest risk of being overly opioid-phobic is that people don’t get treated at all, and that’s already happening.”
The road to pain relief
Part of the solution to addiction to opioids is educating doctors about how to properly prescribe them, as well as how to incorporate non-medical treatments into the mix, from using professional resources like physiotherapists to exploring strategies patients can try themselves, like tai chi. Gordon, for instance, is researching how listening to the right music can ease the relentless, diffuse pain of fibromyalgia. And in his spare time, he’s teaching other health care professionals about all the other treatment options out there. “The biggest goal is to download pain management to primary care physicians,” he says. “The problem is there are about 12,000 family doctors in Ontario, and we’ve maybe worked with 500 of them.” Some provinces have mentorship programs; others, like British Columbia, have hotlines so doctors can dial up a pain specialist whenever they’re overwhelmed and need help. “We don’t have that in Ontario, but I wish we did,” Gordon says.
With so much disparity in resources between provinces, Lynch wants to take things a step further, which is why she co-chaired Canada’s first national pain summit Ottawa last spring. She’s also leading the charge for the national pain strategy. (Australia was the first country to introduce one in 2009, and it led to millions of dollars being allocated to improving pain education and access to care.) Lynch says one of the biggest benefits of a national pain strategy would be to educate health care providers and generally raise awareness — she’s tired of hearing about people whose pain isn’t being taken seriously. “We need to teach Canadians that people with pain are not a bunch of wimps, malingerers or drug seekers,” she says. “They’re real people with a real disease that needs to be treated.”
This is where a national strategy and more money for pain research might help most. Just last year, studies using functional magnetic resonance imaging identified how chronic pain shifts the landscape of the brain — scientists can actually see the decrease in brain matter and how brain activity is altered.
Better yet, a recent study shows treating pain effectively can reverse those changes. Using before-and-after brain scans, researchers at McGill University followed patients who received spinal injections or surgery to relieve chronic back pain. They discovered that six months after their pain was gone, patients had increased cortical thickness in areas of the brain related to pain reduction — and they have the pictures to prove it. That’s got to be better than a grainy image of a UFO captured on someone’s iPhone, right?
- Your risk for chronic pain may be in your genes. Researchers in Toronto and Montreal studied women after mastectomies and found those with a wonky pain receptor (P2X7) in a specific gene had more chronic pain — a discovery that may help scientists fight pain by targeting the problem protein.
- One in 10 people who go to the hospital for a routine surgery winds up with chronic pain.