There are few studies reporting the cost of chronic pain, but the Chronic Pain Association of Canada estimates the cost of chronic pain to the Canadian economy is $10 billion per year.

A study published in the Journal of the American Medical Association in November 2003 reported chronic pain cost $62 billion in reduced performance each year in the U.S. That climbed to $100 billion when lost time and health care costs were factored in.

"It hits individuals in the most productive years of their lives," says Dr. Angela Mailis-Gagnon, director of the comprehensive pain program at Toronto Western Hospital.

In 2001, Dr. Dwight Moulin of the University of Western Ontario Interdisciplinary Pain Program surveyed 340 people living with chronic pain and found the mean number of days pain left people unable to work in the last year was 9.3; for those with severe pain, the number rose to 16.

"Most people think it's like the flu (where you hurt all over) but it's not just the pain, it's everything that comes with it," Jessop says. "You often have zero energy and when the pain comes the fatigue gets worse, it's like the energy gets sucked out of you."

In the beginning, when she was able to get back to work, she pushed herself hard to perform as she always had. It took several crashes to learn she was doing more harm than good.

After taking five years to get her three-year degree, she landed a job as a federal government database technician. She only missed about a day a month.

That changed in November 2001 when a stress-fueled flare-up of full-blown pain and fatigue forced her home. Her doctor urged her back as quickly as possible, so three weeks later she was working part-time. But she couldn't concentrate, she couldn't plan. Exhausted, her brain was in a fog.

"My biggest problem was reading. I do computer programming but I couldn't even read the manuals, let alone work out the logic of what I was doing," Jessop says.

Once she can get the fatigue under control, her cognitive function improves. But after 10 months of working part-time, Jessop's doctor and psychologist recommended she take a few months off. Her condition was deteriorating -- she couldn't keep up the pace she had set for herself before the crash. So from October 2002 to the end of January 2003, she was home.

"Then I went back eight hours a week, thinking I could increase it, but I could not," Jessop says. "By June we decided again that I should stop."

In a 2004 survey conducted by the American Chronic Pain Association, more than half of chronic pain sufferers reported it interfered with their ability to work. And that's what's costing a fortune.

Ten years ago, a review of long-term disability claims by London Life of Canada found that in 1994 alone private insurance companies paid out $46 million in fibromyalgia claims, $27 million for chronic fatigue claims and $30 million for repetitive strain injury claims.

When off sick or working part-time, Jessop's salary is topped up by her long-term disability benefits. It's a financial relief, but she had to fight for it.

"All they had was a few letters from my doctor saying, 'she's fatigued.' And me saying, 'I'm fatigued,' " Jessop recalls. "They don't take people's word for it. They want objective evidence like an X-ray or blood test -- something scientific.

She finally won and while her insurance company won't say why, she figures it was a report from her occupational therapist, who'd spent weeks with her, that convinced them.

In 2003, the Supreme Court of Canada ruled that excluding those disabled by chronic pain from workers' compensation granted to others breached the equality rights of the Charter of Rights.

The ruling struck down a section of the Nova Scotia Workers' Compensation Act that gave those disabled by chronic pain just four weeks of limited benefits, denying them the usual benefits other injured workers had access to.

Not only are many chronic pain patients unable to contribute financially to society, studies have shown them to be heavy users of the health care system.

A 2003 Danish study found that among the country's chronic pain population, twice as many in-hospital days were reported, the health care system was accessed 25% more and the individuals had twice as many contacts with health care professionals.

A 1992 study of a multi-disciplinary pain clinic in Hamilton found that direct health care costs of patients using the service was $2,947 a year. Among those patients who were referred to the clinic, but did not go, health care costs averaged $5,181 a year. The study's authors cited inappropriate use of other health care services as the reason for the $2,234 difference.

With help, it is possible for chronic pain sufferers to stay in the workplace. In March 2004, nine months after she left, Jessop gave it another try.

The therapist taught Jessop stretches to do every 10 minutes that didn't disrupt her work but would alleviate some pain. She also decided the number of hours to be worked each week and created a gentle schedule to increase them.

While she was still having to take sick time on top of her reduced schedule, things were going relatively well until this past summer when fatigue struck her down again.

Life with fibromyalgia is a constant balancing act and, for Jessop, involves careful planning of her days. It takes very little, including a lack of sleep, for everything to go to hell.

To manage her time, she learned pacing from her psychologist to see what she can do in a day. Everything from meals to showers to driving time must be accounted for.

"The rest of the time I'm almost flat on my back," she says. "When I returned to work a year ago, I was at about eight hours. That's the minimum I need to work and have a small life."

Of pain and fatigue: "There's no expectation that it's ever going to go away. You don't know if it will be with you three hours or three years. You have no idea when it's going to stop -- or if it is," Jessop says. "That to me is the big one."

"It's like when you have a body part in a vise and it gets tighter and tighter. It's debilitating. You can't really move. You're more or less immobile."

"We've all had pain. We believe we know what it is is. But you probably didn't have chronic (non-cancerous) pain, which we know is a disease of the nervous system," says Dr. Ellen Thompson, an anesthetist at the Ottawa Hospital who's treated chronic pain from more than 25 years.

"Chronic pain is not simple," says Dr. Angela Mailis-Gagnon, director of the comprehensive pain program at Toronto Western Hospital. "It's not a disorder of a muscle or simple body part. It's a complex disorder that brings in the brain and the personality fabric."

The European Federation of ISAP (International Association for the Study of Pain) Chapters declared in 2001: "While acute pain may reasonably be considered a symptom ... chronic and recurrent pain ... is a disease in its own right."

In 2001, Dr. Dwight Moulin of the University of Western Ontario's Interdisciplinary Pain Program surveyed 2,012 Canadians and found 29% (27% males, 31% females) reported experiencing chronic pain for at least six months. The prevalence peaked at 39% in those over the age of 55. The average duration of pain was 10.7 years.

It's estimated that 80% of doctor visits result from pain. Some global studies have reported chronic pain rates as high as 46%. In Canada, 17-31% of adults suffer from it, depending on the study.

"Pain is not sexy," says Dr. Roman Jovey, president of the Canadian Pain Society. "It doesn't have the sex appeal of other medical conditions. When you're looking for funding and attention, heart disease gets the lion's share."

While many people stricken with debilitating pain take their own lives, chronic pain doesn't directly kill anyone. But as the European Federation of ISAP Chapters stated in 2004: "Although few people die of pain, many die in pain and even more live in pain."

Most chronic pain patients look perfectly healthy with no real evidence they're suffering. So not only is it lacking in sex appeal, it's largely an invisible disability.

And that has caused him grief. He's had people accuse him of faking his illness, of using it as an excuse when he doesn't want to do something. And it's not just insensitive classmates he's had to contend with.

"I'd start to second-guess myself and wonder if I was in as much pain as I felt I was in. It would cloud my judgment with negativity," Charles says. "It's frustrating but you get over it. I have bigger things to worry about in my life. I don't really care what people have to say about me."

In 2003, he also learned the sickle cells had led him to develop a severe case of osteoporosis. Then 14, he started receiving full blood transfusions to clear his system of sickle cells every five weeks.

He's in crisis far less often now. The last time the disease reared its ugly head was March. The crisis lasted for 10 days and caused his lung to collapse for the fourth time.

Less crisis means less pain, but it's far from gone. Sickle cells have left their mark on his back and knees. Walking up stairs is a challenge. As Charles sits on the couch, he shifts often. The dull pain in his back is constant. And while he can live without heavy doses of morphine these days, he still requires methadone when it gets to be too much. That's usually just before a transfusion, when his sickle-cell count is highest.

On the totem poles that are health care budgets, chronic pain sits low on the list of priorities. There is a shortage of comprehensive, interdisciplinary pain clinics. Among those that do exist, primarily in major centres, the waiting list can run as long as 2-3 years -- as is the case here in Ottawa.

That's partly due to the fact doctors are often poorly reimbursed for managing complex-care patients under fee-for-service programs. And the work can be draining, even for those who specialize in chronic pain.

In early 2003, Thompson closed the doors to her pain practice, keeping only 200 of her most complex patients, treating them out of her home office.

Then there are doctors who simply don't believe in what they can't see and tell patients their pain is all in their heads. Other patients are told they're just going to have to learn to live with it.

In 25 years of treating chronic pain, she says she's seen one patient who was malingering -- a contrast to the perception that most patients who complain of pain are faking it.

She says these are patients who can't sleep, can't function in a day, can't work or play or lift their children. Often depression and psychological distress creep in as well.

"Then they go and see a specialist and are told it's all in their head. It's so devastating and it's almost always wrong," Thompson says. "To tell them it's imaginary is abuse of the worst kind."

The biggest single problem is that pain is not something that is taught in medical school, she says. While she's been treating chronic pain and speaking about it for 25 years, her knowledge is garnered from experience and other professionals, not what she learned in school.

"They taught us wonderfully about everything else," she says, noting there were more lessons about malaria than pain. "I'm still waiting to see my first case of malaria."

"By the time they graduate, students know fibromyalgia is something that exists in depressed, middle-aged women," Thompson says. "Pain they don't understand is in the head."

Dr. John Loeser, professor of neurological surgery and anesthesiology at the University of Washington, agrees there is no shortage of doctors who feel if they can't find some broken part to explain pain, the person must be faking or psychiatrically ill -- that pain can only exist in their head.

Medical schools have what he calls "curricular sclerosis." They're made up of fiefdoms where a department owns a piece of the curriculum. When something new arises that's not directly within one specialty, it's exceedingly difficult to get it into the curriculum.

"You would think that a medical education would emphasize pain. But there's no correlation between what's taught in medical school and the prevalence of a complaint," Loeser said. "We have a mismatch."

On top of that, medicine is, to a large degree, locked into the biomedical model -- the idea that anything can be explained by breaking it down into smaller and smaller parts.

"There is so much more to pain than a simple assumption it's either or," she says. "If health care professionals don't understand the mind-body interaction, they will never understand pain."

Her team at the comprehensive pain program was the first in the world to recognize that patients can feel pain in a part of their body for which all tests are normal.

Yet not everyone agrees. Mailis-Gagnon says there is "a huge polarity and hostility" between physician philosophies and that has led to different approaches in treatment.

"If you say it's all in your head or all in the body, you do a disservice to the patient. We put the mind and body together. You can't afford not to."

"The evidence-based practice is clear that multi-disciplinary care, comprehensive care works better than any modality alone," he says. "Yet people who subscribe so strongly to this acute care, biomedical model, want to focus on drugs and surgery and physician interventions. And they do not work as well as comprehensive care."

That group of doctors isn't alone in thinking all pain is physical. Many patients are also tuned in to their physical parts and will search the Internet and change doctors until they find some explanation for what's wrong, Mailis-Gagnon says.

She's had patients leave her pain clinic because they don't want to hear that psychological factors may be at play in their pain. They'll often go and have a surgery they believe will fix the pain only to find out it hasn't.

"They will complete the circle (and come back to the clinic) mutilated and violated, and they are worse rather than better," Mailis-Gagnon says.

"All pain is physical and all pain is psychological. If you didn't have a brain, you wouldn't have pain. It's a matrix. You can't separate the two," he says. "It needs to be approached that way. I would never suggest a pain from a physical cause didn't have a psychological component and vice versa."

- Lost GST: The 7% GST lost as the same population moves from earning an average of $30,000 to $10,000 in disability is the GST lost on approximately $20,000 = $1,400 per person. That's $1.4 billion for all 1 million patients.

Definition: Previously known as causalgia or RSD, reflex sympathetic dystrophy. Pain is caused by abnormal activity in the sympathetic nervous system.

Treatments: There are many strategies for relieving the pain, including topical analgesics, anti-depressants, and opioids. Physical therapy, sympathetic nerve block, or spinal cord stimulation are other possible approaches.

Treatments: Pain and inflammation medication, as well as chiropractic or physiotherapy, and perhaps more unconventional approaches including acupuncture. In some cases, surgery.

Definition: A common condition, characterized by widespread pain and musculoskeletal tenderness. The majority of sufferers (90%) are women, diagnosed in their 40s and 50s.

Treatments: Multi-faceted approach geared to the individual sufferer. Strategies may include analgesics, antidepressants, muscle relaxants, cognitive behavioural therapy, and physical therapy.

Number of people who suffer from the condition: Most people experience headaches from time to time, but close to 20% of Canadians know the agony of migraine headaches.

Definition: A musculoskeletal pain disorder which may involve a single muscle or group -- symptoms may be a burning, stabbing, aching or nagging sensation.

Definition: Osteoarthritis significantly impacts psychosocial and physical function and is a leading cause of disability in later life. Pain, the most prominent symptom in most people with osteoarthritis, is the most important determinant of disability.

Definition: A condition where nerve damage generally starts in both feet, but may progress to calves, fingers and hands. Also known as Stocking and Glove Neuropathy.

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