“Heart-sink patients”: it’s how one doctor described those who came to him with chronic pain, according to Maria Hudspith, founding executive director of Pain BC.
“He said, ‘I see their name on my agenda for the day and my heart sinks because I have so little to offer them,’” Ms. Hudspith remembered the doctor telling her.
Today, resources for treating chronic pain remain “absolutely inadequate” in this country, said Ms. Hudspith, whose national non-profit organization aims to enhance the wellbeing of people who live with pain. Ms. Hudspith also co-chairs the Canadian Pain Task Force, a group now advising the federal government on fundamentally shifting how chronic pain is understood, prevented and managed in this country – beginning with growing recognition that pain is a real and serious health care problem.
“For a long time, chronic pain has been understood as something of a fiction or a character flaw – this idea that people are out for secondary gain from an insurer, or trying to get out of work, seeking sympathy, or getting pain-reducing medication from a doctor,” Ms. Hudspith said.
Not broadly understood is the concept of chronic pain as a distinct health problem: “When pain becomes chronic, it really becomes a condition of the nervous system,” Ms. Hudspith explained. “It becomes a condition in and of itself, not just a symptom of something else.”
This month, the World Health Organization legitimized chronic pain as a condition in its own right in the latest revision of its international classification of diseases. Experts believe this change will validate the experiences of those living with pain and bolster patient care.
The Jan. 1 revision makes clear that chronic pain can present as a secondary symptom of another condition, or as a stand-alone diagnosis. It also acknowledges pain-related disability and distress. Crucially, the new WHO classification offers multiple diagnostic codes for chronic pain, meaning patients could gain wider access to various pain treatments and see better reimbursement from insurers for their care. Experts believe the revision will also improve data collection on this condition, with clearer statistics key to shaping public policy.
“For people in the pain community, this recognition is a long-fought-for moment in history,” Ms. Hudspith said. “Of course, it takes a decade for the classification to really filter down and be seen in a doctor’s office.”
Approximately 7.6 million people – or one in five Canadians – live with chronic pain, according to 2019 data from Statistics Canada. The problem exacts a heavy economic toll: Health care costs and lost productivity from pain-related absenteeism and unemployment cost approximately $40-billion in 2019, according to Health Canada. The number of sufferers is expected to grow as the country’s population ages: One in three Canadians over 65 will experience the issue.
Still, the problem remains misunderstood both by the public and by many health care professionals. Those suffering with near-constant pain often struggle to keep the medical system engaged with their cases: The cause may never be diagnosed, and their pain only changed, not cured.
Health care workers urgently need better training on these issues, Ms. Hudspith argued. Last January, a new curriculum on pain prevention, diagnosis and treatment was released for the country’s 17 medical schools – a shift echoed in similar education for nurses, pharmacists and social workers. There is also a move toward mentorship programs that see hubs of experts – pain specialists, family doctors, pharmacists, social workers, occupational and physical therapists – advising other primary care providers on their more difficult cases at monthly virtual seminars.
“There’s a huge variability in the response to chronic pain,” said Michael Ford, an affiliate scientist in orthopaedic surgery with the Holland Bone and Joint Team at Sunnybrook Health Sciences Centre in Toronto.
Though retired from surgery, Dr. Ford sees patients experiencing significant pain in their joints, knees, hips, lower backs and necks due to degenerative conditions, which typically appear as people age. He also helps patients after car crashes, workplace accidents and sports injuries.
Many have lived with pain for long periods of time, Dr. Ford said. Some describe the immense stress of routinely having to prove to those around them that they are suffering. It’s a cycle that can lead to depression, which can worsen pain, Dr. Ford explained. “We’re talking about human beings here. We’re not just talking about spines. There is a significant component of the psyche when it comes to how someone deals with chronic pain.”
Dr. Ford has been helping one of his patients for three decades. Though John Firstbrook is now 65, his pain began in high school. At a graduation pool party, the 17-year-old tried to dive from a window of the host’s house into the pool and ended up fracturing his cervical spine, in the area of his neck.
Several years later, Mr. Firstbrook had another accident, this time skiing, with his ski tip caught in a tree concealed by deep powder. “I ended up bent in half in a ditch,” he recalled. “I did a fair amount of damage again.”
Beginning at 17 after the first accident, he suffered stabbing pain with movements of the neck. The young man underwent a series of procedures, including numerous neck fusion surgeries at every level of his spine between the brain stem and top of the ribcage. “It was like putting your finger in the dike and a new spot of water would show up three feet away,” he said.
Eventually, the neck fusions took hold. “For a temporary period of time, I was pain-free. It was wonderful,” said Mr. Firstbrook, who is president and chief executive of the Firstbrook Insurance Group.
The reprieve wouldn’t last. By his early 30s, he began experiencing sudden and severe pain in the lower back, as well as difficulty walking.
Slowly, his doctors surmised the problem might be genetic: Mr. Firstbrook’s grandmother had extreme spine issues, too. Dr. Ford explained that his patient is genetically predisposed to Scheuermann’s disease, which involves accelerated degenerative change in the spine, specifically the lower back. “It results in the discs herniating into the bone and changing the shape of the vertebrae,” Dr. Ford said, noting that the condition causes “almost-constant pain.”
After undergoing more than a dozen surgeries, Mr. Firstbrook and his medical team have decided to halt this route until they see a major breakthrough in treating mechanical back pain. “There’s a point where you have to,” Mr. Firstbrook said. “It’s hard to hear it and it’s hard to live it.”
Today, exercise is a mitigating force in his life. Crucially, his personal trainer Dan Newberry called his surgeon first to understand his limitations before creating a regimen. “What he brought was discipline and a clearer approach. He’s changed the way I operate,” Mr. Firstbrook said, noting that fitness has vastly improved his mental outlook. “At 7 o’clock in the morning, most days I can’t stand up. But by 5 o’clock in the afternoon I’m on level 15 on the treadmill doing 45 minutes.”
His surgeon explained that careful exercise regimens can benefit chronic pain sufferers: “If it hurts to move, you don’t move, so you get stiff and weak. That increases pain, too,” Dr. Ford said.
The treadmill allows Mr. Firstbrook to lean forward while walking, which eases some discomfort. In the summer during the pandemic, he switched up his routine, walking miles of hills near his Toronto home with a friend.
“While living with chronic pain is a challenge, you can still have a meaningful, positive life,” Mr. Firstbrook stressed.
More support is needed for those with chronic pain, Ms. Hudspith said. Pain BC offers a support line staffed by social workers as well as peer support groups and one-to-one coaching, which aim to help people understand the connections between pain and stress and improve the quality of their lives.
Ms. Hudspith is advocating for more specialized clinics for those with complex pain issues, arguing that Canada’s medical system still lacks specific infrastructure for chronic pain, the kind that exists for other chronic conditions such as diabetes, arthritis, cancer and heart and stroke.
“For the most part, people are being badly managed in primary care,” Ms. Hudspith said. “They’re going to the private sector in a scattershot way, seeking a chiropractor, a physiotherapist, a yoga therapist or a psychologist, if they can find one and pay for it.”
She and other experts are urging more robust early assessment and intervention so patients’ acute pain does not become chronic. She points to a number of hospital “pre-habilitation” and transitional pain programs, meant to head chronic pain off at the pass directly before and after surgery.
“Just as movements have been built to think holistically about mental health, wellness, substance abuse and its links to other social problems,” Ms. Hudspith said, “that is where we are going on chronic pain.”
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