'I live this life in pain'
One in five Canadians enduring constant physical agony struggle to find help and hope
By Sharon Kirkey, Postmedia News October 1, 2011
Sometimes, when the pain drugs don't reach her, Lous Heshusius lies on the floor as still as a corpse. "Please," she'll whisper, "Please, let it pass."
She says there have been moments when she's imagined taking a knife and cutting through the muscles and tissues in her shoulder and neck, just to ease the unbearable tightness.
It has been 15 years since the car crash that nearly killed her. Fifteen years and more than 30,000 hours of pain - stabbing, burning pain so intense at times she cannot think or speak. The kind of pain that paralyzes, says the woman from Sooke. "It's like going into another world." She has no memory of the impact, no memory of being broadsided by a car travelling 90 kilometres an hour as she pulled away from a stop sign on a country road north of Toronto in September of 1996. No memory of her car being rammed across the intersection and flipping into a ditch.
When police found her unconscious and slumped in the mangled front seat, her face bloodied from the shattered glass of the windshield she hit when her seatbelt came undone, they thought she was dead. Doctors at the hospital told her the force of the impact was so intense that her neck could have been broken; death could have been instant.
"Such a painless journey it would have been," Heshusius wrote in her published memoir of a life lived in pain.
"Straight to paradise." Instead, the accident sent Heshusius into a world she could not have prepared for, a state experienced by millions of Canadians every day - one of unrelenting, incapacitating and life-altering pain.
One in five Canadians - roughly six million people - is living with chronic pain of some kind, sometimes as a result of trauma or illness, and sometimes for no obvious reason at all. Over the next two decades, that figure is expected to grow to one in three as the population ages. Aging brings pain, from arthritis, from complications of diabetes, from stroke and heart disease.
Cardiac surgery, surgery for breast cancer, caesarean sections, hip replacements and even gallbladder removal and hernia repairs - all can cause persistent pain. Depending on the operation and how it's performed, 10 to 50 per cent of patients will be left with burning, electric-shock-like pain, sometimes years after incisions heal. Thoracotomies - where the chest is cut and the ribs pried open to gain access to the heart and lungs - carry one of the greatest risks.
While modern medicine can help people survive serious illness, sometimes it's at the cost of great pain. Nerve damage from some chemotherapy drugs can lead to one of the most profound pain conditions known - chemotherapy-induced peripheral neuropathy, a condition that can cause numbness, tingling and pain that starts in the hands and feet and can slowly creep up the arms and legs. Doctors have no way to predict who will get it.
All in all, chronic pain - back pain, head pain, neck pain, abdominal pain, joint pain, pelvic pain, pain from fibromyalgia, pain from irritable bowel syndrome and any pain that persists beyond six months or the "normal" recovery time - costs Canada an estimated $6 billion a year in direct health care costs, as well as an estimated $37 billion a year in lost productivity. That's more than cancer, heart disease and HIV combined.
Yet chronic pain is one of the most invisible, under-treated and disbelieved afflictions in Canada - a country that is, ironically, home to some of the world's leaders in pain research.
Pain is virtually ignored in discussions about health reform. Waiting times for treatment at publicly funded pain clinics in Canada average one to three years. The chronic pain clinic at Vancouver's St. Paul's Hospital has a 3½-year waiting list of about 1,300 patients. In Calgary and Ottawa, the wait time to see a pain doctor can be a year or longer. At the Alan Edwards Pain Management Unit at the Montreal General Hospital, the waiting list is 700 names long.
For children in pain, the situation is equally bleak: Only a handful of centres with specialized pain programs for children and adolescents exist in Canada. Most don't run anywhere close to full time.
Doctors who treat patients living in pain say that any wait for care beyond six months is medically unacceptable, because early intervention can keep lives from turning into train wrecks. Uncontrolled pain can cost people their jobs, careers, homes, marriages, friends and sense of identity. People, including young mothers - and the burden of pain is greater for women than for men - lose the ability to take care of their families. Constant severe pain deadens personalities. Looking in the mirror, Heshusius said she sometimes hardly recognizes herself. "Who is she?" she wonders.
PRICE OF PAIN IS HIGH
Pain is demoralizing and isolating. It can destroy people financially. People unable to work lose their benefits; they lose fights with insurance companies and workers' compensation.
The instinct is to retreat, to curl up and wait for the torment to stop. People living with chronic pain are twice as likely to suffer major depression as people living without pain.
They are also twice as likely to kill themselves.
Yet despite the burden of suffering, pain is poorly treated in Canada. Sometimes it is not treated at all.
"You can do a lot with what's available now, but most people don't get it," says Dr. Catherine Bushnell, Canada Research Chair in clinical pain and president of the Canadian Pain Society.
Experts blame the meagre training health professionals receive on assessing and managing pain (a survey of 10 major Canadian universities found that veterinary medicine students receive, on average, 87 hours of mandatory training in pain, versus 16 hours, on average, for medical students); inadequate funding for research (just one-quarter of one per cent cent of all federal dollars for health research in Canada go to pain); a health system that doesn't compensate doctors for the time it takes to provide meaningful pain care ("we take up too much time," pain patients say over and over again), stigmatization and attitudes toward people with pain and a strong reluctance to prescribe opioids for chronic noncancer pain.
So patients struggle to find doctors to help them, leaving the burden of care to fall on over-stretched pain clinics and the small number of community doctors willing to help. People with pain describe being treated like street addicts when they land in emergency rooms in a pain attack so severe they can barely put one foot in front of the other.
Chronic pain patients "are often given the message 'you're imagining it. It can't be that bad. You need to get over it. There's nothing we can do,' " says Dr. Mark Ware, director of clinical research at the Alan Edwards Pain Management Unit.
LASTING NERVE DAMAGE
"These kinds of things stick in a patient's mind. They are horrible things to hear when you're facing a long-term diagnosis of a chronic pain syndrome."
Pain kills. People with chronic pain die two to five years earlier than those without pain. Poorly treated chronic pain can cause lasting changes in the peripheral nerves, spinal cord and brain so that, essentially, the body forgets how to stop hurting long after the point where normal healing should have occurred.
The pain system becomes so wound up, explains Dr. Michael Negraeff, an anesthesiologist and pain specialist at Vancouver General Hospital, that normal touch hurts, "and regular pain becomes huge pain."
Judy Kohut's pain starts in the middle of her back, and then snakes up, into her neck and head. The Edmonton woman has spinal stenosis, scoliosis, fibromyalgia and nerve pain. If you saw her seated in a restaurant she would look perfectly normal, until she stood. She's bent at the waist, and shuffles, dragging one leg.
In 2003, she started to feel intense pain in her back, but she was working in a communications job she loved and refused to pay attention to it, until the day she flew home from Ottawa, lifted her luggage off the turnstile, set it on the floor and couldn't stand up again. Her body had seized up completely.
At the hospital she had the first of three back surgeries to deal with the worst of the ravaged discs. She's had surgery to replace both knees and her left hip since. She used to be fivefoot-10 and is now five-footseven at most. On the worst days, which are most days, she describes her pain as nine on a scale of 10, even with powerful medications. Her total body is in spasm.
BEST DAYS ARE A 7
She says her best days are a 7. The excruciating lower back pain is still there, as well as that feeling, as if someone were sticking a hot knife under the shoulder blade. But the fibromyalgia isn't so hot and burning and prickly, and she has some feeling in her feet.
Once highly independent, Kohut now can't walk unaided; she needs help getting in and out of the bath. She can't do her own hair because she can't raise her arms; she can't do her own shopping because most days she can't even carry a purse. She says she feels like a prisoner in her own skin.
She runs a support group for people living with chronic pain and one of the things that rubs raw the most are the comments, "Well, you don't look handicapped."
"What does that mean, handicapped?" Kohut asks. "What is someone who is handicapped supposed to look like?" She says society needs to stop turning away from people in pain. "Turn toward us. Reach out and give us hope."
She reads a lot; she journals, she searches for information.
Prayer, massage, meditation and deep breathing. Physiotherapy and acupuncture and electrical spinal stimulation. Anti-convulsants to slow down the communication between pain nerves to keep them from firing uncontrollably. Narcotics and nerve blocks and Botox and cortisone injections. People with pain - at least those who can afford it or with insurance to pay for it - try one therapy after another. Some help; some make the pain worse. Some people spend thousands of dollars only to realize, "This isn't working."
DRUGS DON'T ALWAYS HELP
There is no cure for chronic pain and none is in sight. The best doctors can hope for with medications alone is about a 30 per cent reduction in pain levels.
For some patients, the drugs don't even do that much, says Dr. Lori Montgomery, medical director of the Calgary Chronic Pain Centre. As well, the side effects - nausea, dry mouth, overwhelming fatigue, weight gain, foggy thinking and memory problems - can be intolerable.
That's why pain experts say that treatment requires a multipronged approach that includes access to psychologists, rehab specialists, physiotherapists, occupational therapists - services that, in most parts of the country, aren't publicly funded. Pain researchers, doctors and patient groups across Canada want a national pain strategy that would officially recognize chronic pain as a disease in its own right - not merely a symptom of something else. They urge better coordination of resources, more investment in training doctors in pain, better assessment, prevention and pain treatment across the country in hospitals, long-term care facilities and nursing homes, more multi-disciplinary pain clinics and improved community-level care to help people manage their pain and gain control over their lives.
Lous Heshusius says what's needed is a sea change in society's mindset about pain.
"There is so much in society that works against pain relief, against us getting help - structural problems, political problems, funding problems."
We live in a society that says only that which can be seen and measured is true and valid and real, she says, "and I think that is doing us in."
She says she can't count the times she has heard, "But you look fine." Or, "Can't you take some pain pills for that?" "People have no idea what kind of lives we live," she says.
Her old one ended in a splitsecond's distraction.
Her first memory of the crash is of coming to as paramedics strapped her to a stretcher.
"It was a fantastic experience - I felt like I was in sunlight, there was this very wonderful light feeling, with a lot of beautiful faces in front of me, except the faces turned out to be very worried paramedics," says the Dutch-born Heshusius, who was a tenured, full professor of education at Toronto's York University before her accident, a job she says she loved. The crash mangled her neck and vertebrae. Fifteen years later, she still suffers sharp, shooting pain that travels from the base of her skull, up into her head, and then through her neck into her left shoulder and arm.
The pain is usually at its worst in the morning. When the pain is intense, when it lives "somewhere between 11 and infinity" on a scale of 10, as she describes it in her book, "It just grabs your attention so totally that you cannot really move. It's extraordinarily hard to find the language for it. You just move into another sphere."
During the worst years, "those horrible, dark, dark days" between 1999 and the end of 2003, she says she thought of suicide every day. She says she tried to talk to six health care professionals. The response was, essentially: "We don't want to go there."
"I'm still angry with that. I'm still furious."
Were it not for her two daughters, she would not be alive today, she says. ("There is no question about it.") One of her girls once told her she would give up her arms if it meant freeing her mother from her world of pain.
They were her salvation. So, too, were the hundreds of pages of jotted notes she kept that would later form her book, Inside Chronic Pain: An Intimate and Critical Account.
Over the years, she has seen 22 doctors and specialists, from the "truly caring to the clearly uncaring."
Prolotherapy, an alternative treatment that involves injections into the ligaments and tendons, has taken about 50 per cent of the pain away, but it's still there. It moves in and out and she says she never knows when a major pain attack will hit. She's landed in emergency rooms twice.
Heshusius can't teach any more, or take long trips. She often spends hours looking out at the ocean from her yard.
"I've always been a bit of a solitary person, which serves me well, now that I live this life in pain," she says.
"Because you find yourself alone a great deal."
WHO WILL STOP THE PAIN?
A four-part series on chronic pain, Canada's silent epidemic of suffering.
TODAY: Inside the world of unrelenting, incapacitating and life-altering pain.
MONDAY: How Canadian scientists are leading a revolution in pain research.
TUESDAY: Opioids can help with chronic pain, but it is becoming more difficult for sufferers to get them for legitimate use.
WEDNESDAY: The vast majority of Canadian children in pain do not have access to appropriate care.
WHO WILL STOP THE PAIN?
series covers a wide variety of topics associated with chronic pain and the battle to overcome it.
Find the whole package, including videos, at www.vancouversun.com
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