HALIFAX — Helen Tupper has lived most of her life in pain.
Sharp, aching and stabbing are just a few ways she describes what she’s been feeling for 42 years.
She paints pain too — raging red images — capturing the “hot poker” sensations that have sent her for surgery and cortisone shots, pills, acupuncture and more.
These days the 66-year-old Dartmouth, N.S., woman also paints pastoral scenes to escape from pain that came at age 24 and stayed — multiplied even, so that some days she still hurts from head to toe.
But despite her ability to explain the agony, chronic pain remains an often ignored or misunderstood condition by many others, doctors included, says local expert Dr. Mary Lynch.
“There are so many myths out there and our society continues to blame people for having their pain, saying that they’re wimps or they’re suffering from some (character) flaw,” says Lynch.
She’s been Tupper’s doctor and is director of the pain management unit at Queen Elizabeth II Health Sciences Centre.
Despite the “society-wide denial,” the doctor says chronic pain is all too real and “devastating” for people who have it.
Doctors and others have traditionally considered pain a symptom of underlying disease or injury, she says.
“We now know that chronic pain really is a disease in its own right and chronic pain can persist after the injury has healed, and after the illness has gone away.
“So what happens is the body has a very complex nervous system and that nervous system, when it is assaulted by disease or injury, can change in pathological ways and so you can get a situation where the nerves essentially get stuck in the ’on’ position.”
And for people like Tupper that means the pain goes on and on.
“It’s devastating,” says Lynch, also a professor of anesthesiology, psychiatry and pharmacology at Dalhousie University and president of the Canadian Pain Society, a national organization of doctors and scientists.
“Chronic pain is absolutely devastating. It really challenges every fibre of a person’s being. People who have faced huge challenges in their lives and overcome them are particularly challenged by chronic pain because you can’t get away from it. It’s just there all the time.
“Imagine every day having a sharp, shooting … needle-like sticking pain — like an ice pick being stuck into your face or a lightning bolt shooting across your brow or into your teeth. Imagine living with that. … There are people trying to live with pain like that.”
Tupper’s lived like that, the pain being more severe in her lower back and legs.
A nurse at the time, she injured her back in 1966 while trying to lift a patient who’d fallen out of bed.
And that, she says, “was the beginning of the rest of my life.”
She underwent surgery several weeks later to repair the ruptured disc. The operation went well.
But when she became pregnant, the pain in her lower back returned. And while she was giving birth, she injured her sciatic nerve.
A lacerating pain shot down her right leg and into her foot. It’s never fully left.
“It’s a sharp, stabbing pain,” she says, sitting in her living room on a special reclining chair, fitted with a foam device moulded to her back.
“It feels like I’ve got a hot poker down that leg and there are times I just wish I could cut it off and stand it in the corner for a little while, just to get rid of it.”
Adding to the ordeal, Tupper, her husband and two children were in a head-on car collision in the early 1970s that injured her back further and hurt her neck.
“That stirred up the back condition for real,” she recalls. “I was in a lot of pain from then on and that lasted for years.”
So for years she took over-the-counter pain killers and for years she went to doctors for relief. Often they dismissed her complaints as bearable or all in her head — something Lynch hears often from patients who’ve lost all hope by the time they come to her.
“Nobody here could get to the bottom of it,” Tupper says of her condition.
“They ended up sending me to psychiatrists and I refused their medications because I knew that if they got rid of the pain I’d be fine. I was depressed, but it was because of my pain, and I wasn’t going to take drugs for something that was an adjunct to the pain.”
In 1979 Tupper saw a Toronto specialist who finally gave her pain a name —fibromyalgia.
“I was delighted to have a diagnosis,” she says, “and sort of rode high on that for a couple days until I realized he had said there is no cure, there is no treatment.”
Tupper, unable to work or even do basic household chores, started exploring alternative treatments like acupuncture, which gave temporary relief.
She had a spinal fusion operation as well after an orthopedic surgeon told her she had an unstable spine. That helped for a while, but her lower back pain gradually returned.
“It just seemed like it was a demon following me. I couldn’t seem to get rid of it no matter what I did.”
Tupper resisted taking prescribed pain medications for years, but nothing really helped until she did.
She’s been taking prescribed drugs since 1993. She doesn’t want to say what kind.
The pills, taken every eight hours, don’t get rid of the pain. But they reduce it.
“On a pain scale of 0 to 10, I was always running about an eight; now I’m at a two, 2 1/2 — so that’s livable.”
And that’s what she, and Lynch, want others to know — people can live with and get relief from chronic pain.
The pain management unit itself helps, says Tupper, since it “gives people hope.
“There are doctors who care; there are methods to be tried.”
The unit, which treats patients and conducts research, uses a variety of methods to ease chronic pain and pain associated with specific injuries or disease.
Lynch says medications, including certain types of antidepressants, help some people with physical pain. Others get relief from age-old methods like acupuncture.