Source: FM-CFS Canada

Common Chronic Disorders and Treatments

Complex Regional Pain Syndrome (CRPS)

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.

Chronic Low Back Pain

Definition: Chronic back pain is among the most common pain syndromes affecting men and women equally.

Number of people who suffer from the condition: 1 in 50 Canadians (600,000) will be disabled by chronic back pain in their lifetime.

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

Fibromyalgia

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

Number of people who suffer from the condition: More than one million Canadians.

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

Headache

Definition: Headache pain can range from debilitating to bothersome.

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.

Treatments: For a normal headache, a simple Tylenol may do the trick. Migraine headaches are often treated with drugs called Triptans.

Myofascial Pain Syndrome

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

Treatments: Approaches geared to the individual patient, but may include pain medication, physical therapy (possibly massage therapy or chiropractic), as well as medication to deal with consequences, including insomnia and depression.

Osteoarthritis

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.

Number of people who suffer from the condition: Roughly three million Canadians (one in ten) suffer from this common form of arthritis.

Treatments: Analgesics, pain relief creams and gels, nonsteroidal anti-inflammatory drugs, cortisone injections.

Phantom and Stump Pain

Definition: Common for patients who have undergone an amputation. Number of people who suffer from the condition: Up to 80% of amputees may experience this pain.

Treatments: Anti-depressant and anti-convulsant drugs. Non-surgical treatments, such as electrical nerve stimulation, as well as surgical options.

Polyneuropathy

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.

Shingles

Definition: Skin rash that develops in a belt-like distribution. Postherpetic neuralgia is shingles pain that does not go away.

Treatments: Lidocaine skin patches, pain killers, antidepressants, and transcutaneous electrical nerve stimulation.

Sickle Cell Pain

Definition: Sickle cell disease is the name given to a group of illnesses that are a result of red blood cells that become misshapen.

Suffer the children
A Life of Pain: 15% of Canadian kids suffer recurring or chronic pain -- often mystifying medical professionals

Chronic pain has no face. It often doesn't even have a voice. Some of its tiniest sufferers can't yet say a word.

In Canada, 15% of children suffer recurrent or chronic pain.

In general, it increases at puberty. That's when girls have the advantage. They have many more pains than boys, something particularly evident in migraines.

"It's not as infrequent as one might think," Dr. Patrick McGrath, a psychologist at IWK Health Centre in Halifax, says of pain. "It's very common."

Dr. Ken Craig, a psychology professor at they University of British Columbia, studies children and other populations that have trouble communicating distress.

"For the most part, there is under-recognition, under assessment and inadequate provision of care for these populations," he says. "We just have a huge gap between need and what is being done for people."

That's why the 2nd annual Global Day Against Pain tomorrow will focus on children's pain. Organized by the International Association for the Study of Pain, the day is part of a year-long initiative of individuals involved in pain research and treatment worldwide to bring attention children's pain.

Up until the 1980s, the claim remained in medical texts that infants, particularly newborns, were insensitive to pain.

"There have been dozens of studies demonstrating that this was wrong," says Craig.

NEEDLESS SUFFERING

The thinking saw infant surgeries performed without anesthesia. They suffered needlessly, Craig says, and continue to.

His research shows children are in their second year of life before they can begin to use words to communicate their distress. They're almost school age before they can talk about pain and describe the subjective experience.

"It's easy for people to say they won't remember pain," Craig says. "But we now know that the sensory systems needed to bring information to the brain mature certainly by the third trimester of pregnancy. And we know that repeated, painful experiences during infancy do have lasting impact -- behavioural and physiological."

Kids often grow up experiencing more emotional distress. They can feel more vulnerable and have lower self-esteem.

Research has shown pain in childhood can contribute to disability and suffering later in life.

There is still much to learn.

"For most kids, we don't know why they're having pain. Not all, but most," McGrath says.

IASP efforts are geared to improving the global standard of children's pain management and call for it to become a priority for all health care professionals.

Barriers that keep knowledge about pain and its management out of clinical practice must also be broken.

Canada has a significant role to play, as it leads the world in research on pediatric pain.

"There's more good research being done here than anywhere else in the world," says McGrath, who's also the Canada Research Chair in pediatric pain based at Dalhousie University.

SILENT EPIDEMIC

Today, the Sun begins a five-part series on chronic pain. It's something that affects almost one in three Canadians, but remains a silent epidemic.

In keeping people isolated, away from work and from school, chronic pain is also largely invisible.

It's also costly on so many levels that go beyond financial.

Over the next five days we won't fix all the problems of chronic pain but at the very least we will give it a face.

holly.lake@ott.sunpub.com

Pain. We all hurt sometimes. Imagine a pain that just won’t go away. Ever. A pain that follows you around like a dark shadow. For some, it is aggravating. For others it is unbearable. For millions of Canadians, it is not hard to imagine at all. To varying degrees, they live with it every day. In this special 5-part series, health reporter Holly Lake tells your stories of pain, suffering ... and hope.

Charles Ofori-Attah’s handsome young face is smooth, without a single line that age is known to bring.

On the inside, Charles is older. Just 16, he feels his body has skipped ahead of the clock that marks his years.

He was diagnosed with sickle cell anemia when he was six months old and since then the evil, crescent-shaped cells have sent him into crisis many times and left him wracked by chronic pain.

"I feel like an old man," he says. "I’m stiff all the time and in pain."

When Charles was nine, he developed chicken pox, then flesh-eating disease that landed him at CHEO for two months.

"I don’t know what that did to my body, but (things) escalated," Charles says. Soon, every month brought a sickle cell crisis, when it had previously happened just three or four times a year. Each time, CHEO would become his home for two weeks.

The severe pain would strike quickly, hitting with little warning other than a slight loss of appetite.

"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.

For most people, pain is part of the body’s normal alarm system. It’s a warning that’s there to protect us from harm.

"Having chronic pain is like having an alarm system that goes off incessantly," Thompson says.

Chronic pain is defined as pain that persists more than six months, but some believe the definition should be based on more than duration.

"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."

There are people who function well despite the pain, but for many, it takes over their lives.

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. Among children, chronic and recurrent pain is thought to affect about 15%.

"We are talking about an epidemic of pain," says Mailis-Gagnon. "But because it’s a silent epidemic, we don’t pay attention to it."

Some say that’s because it’s simply not dramatic enough - no one’s dropping dead.

"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."

Cancer is another, though he’s quick to say he doesn’t begrudge either as both are common disorders.

"But pain is also right up there," he says. "But patients tend to be fairly passive. They’re struggling to survive, so they’re not vocal."

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.

"You can’t look at them and say they have pain," says Thompson.

Charles’ 16-year-old body certainly hides the agony it has endured. "I don’t look sick," he says simply. 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.

"Adults, you would think, are smarter and more understanding. So when they’re not, it’s frustrating," he says.

While his peers are more negative and cynical now, Charles says those attitudes bothered him more when he was younger.

"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."

His oldest, closest friends have come to accept his limitations, which keep all physical sports off limits.

"I only play golf," Charles says with a grin.

His back pain was ever-present and all-consuming. He recalls taking "enough morphine to bring down a rhino."

Pain kept him from school. Grades 7, 8, 9 and part of 10 saw him split his time between home-schooling and CHEO.

"I was in my house all the time. I didn’t go out. A lot of times I wouldn’t even come down for supper. My mom would bring it up."

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.

"I’m always in pain. That’s just the way it is."

-----

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.

The tragedy is that with injured patients, there is a 2-3 month window when proper treatment might prevent their pain from becoming chronic. There is also a reluctance on the part of many family doctors to get involved in the often-complicated care of chronic pain patients.

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.

"I’ve done this longer than anybody in town,"she says. "You burn out. It’s very stressful. These are desperate people. We can only cure a few, we can ameliorate the situation for many, but there are a few that are intractable."

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.

To those who don’t believe, Thompson has this to say: "This is not a religious issue. Belief doesn’t enter into 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." It’s much the same today, but trying to bring change to the "conservative" medical profession is like trying to stop an ocean liner, she says.

"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.

"That of course is baloney," he says. "But it’s because of the way we educate physicians." 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.

Yet the complaint of pain is the No. 1 symptom that brings patients to a doctor.

"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.

"That’s a failed premise when it comes to humans. You can’t possibly understand human beings by studying their parts," Loeser says.

Also wrong is the idea that the physical being can be separated from the psychological, says Mailis-Gagnon.

"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.

"We were the first to show with functional (MRI) imaging that patients like this have profound changes in the way they activate their brains."

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. Those who believe pain is all physical treat their patients with "needles, needles, needles," she says.

"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."

Dr. Ken Craig, a professor of psychology at the University of British Columbia agrees.

"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.

That’s the thing about chronic pain - it’s not like appendicitis, where removing the appendix makes the pain go away.

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

Dr. Patrick McGrath, a psychologist at IWK Health Centre in Halifax and the Canada Research Chair in pediatric pain based at Dalhousie University, sums it up this way:

"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."

-----------------------

Chronic pain has no face. It often doesn't even have a voice. Some of its tiniest sufferers can't yet say a word.

In Canada, 15% of children suffer recurrent or chronic pain.

In general, it increases at puberty. That's when girls have the advantage. They have many more pains than boys, something particularly evident in migraines.

"It's not as infrequent as one might think," Dr. Patrick McGrath, a psychologist at IWK Health Centre in Halifax, says of pain. "It's very common."

Dr. Ken Craig, a psychology professor at they University of British Columbia, studies children and other populations that have trouble communicating distress.

"For the most part, there is under-recognition, under assessment and inadequate provision of care for these populations," he says. "We just have a huge gap between need and what is being done for people."

That's why the 2nd annual Global Day Against Pain tomorrow will focus on children's pain. Organized by the International Association for the Study of Pain, the day is part of a year-long initiative of individuals involved in pain research and treatment worldwide to bring attention children's pain.

Up until the 1980s, the claim remained in medical texts that infants, particularly newborns, were insensitive to pain.

"There have been dozens of studies demonstrating that this was wrong," says Craig.

NEEDLESS SUFFERING

The thinking saw infant surgeries performed without anesthesia. They suffered needlessly, Craig says, and continue to.

His research shows children are in their second year of life before they can begin to use words to communicate their distress. They're almost school age before they can talk about pain and describe the subjective experience.

"It's easy for people to say they won't remember pain," Craig says. "But we now know that the sensory systems needed to bring information to the brain mature certainly by the third trimester of pregnancy. And we know that repeated, painful experiences during infancy do have lasting impact -- behavioural and physiological."

Kids often grow up experiencing more emotional distress. They can feel more vulnerable and have lower self-esteem.

Research has shown pain in childhood can contribute to disability and suffering later in life.

There is still much to learn.

"For most kids, we don't know why they're having pain. Not all, but most," McGrath says.

IASP efforts are geared to improving the global standard of children's pain management and call for it to become a priority for all health care professionals.

Barriers that keep knowledge about pain and its management out of clinical practice must also be broken.

Canada has a significant role to play, as it leads the world in research on pediatric pain.

"There's more good research being done here than anywhere else in the world," says McGrath, who's also the Canada Research Chair in pediatric pain based at Dalhousie University.

SILENT EPIDEMIC

Today, the Sun begins a five-part series on chronic pain. It's something that affects almost one in three Canadians, but remains a silent epidemic.

In keeping people isolated, away from work and from school, chronic pain is also largely invisible.

It's also costly on so many levels that go beyond financial.

Over the next five days we won't fix all the problems of chronic pain but at the very least we will give it a face.

holly.lake@ott.sunpub.com

Suffering stole her childhood

For Ayala Ravek, it was a spinning hockey puck that sent her life spiraling in 1998. She was in Grade 5 and playing floor hockey when she was struck in the leg.

When she got home, her kneecap was twice its normal size. "The doctor couldn't even touch me. As soon as he'd lay his hands on me, I'd start yelling," Ravek says.

Yet tests and scans on her knee found nothing.

"I had doctors saying it's all in my head, that I needed psychiatric help," she recalls. "I thought I was crazy. I started to believe what they were saying."

Eight months later, she was finally diagnosed by a pediatric neurologist at CHEO. But it could have come sooner. Four months earlier, her uncle, an anaesthetist, had suggested to Ravek's parents that it might be Reflex Sympathetic Dystrophy Syndrome (RSD). The chronic neurological syndrome is characterized by severe burning pain, pathological changes in bone and skin, tissue swelling and extreme sensitivity to touch. But when they suggested that to another doctor, he dismissed it.

"It's just an exaggerated response to pain," Ravek recalls him saying. "He kind of threw his hands up in the air, brushing it off."

Two months after being struck, Ravek fell down a flight of concrete stairs at school that left her with shooting pain from head to toe and throbbing that wouldn't quit.

"I was a mess," recalls Ravek, 18. "I spent most of my time in my room. I listened to music and read -- that's all I did."

There was little else she could do. Once enjoyable hikes with her family couldn't last more than five minutes. Often she was in the hospital getting treatment that hurt almost as much as the pain she was being treated for. Miserable, she was on a semi-suicide watch. And if she wasn't in pain, she was in a medicated fog.

She missed the remainder of Grade 5, as well as a great deal of Grades 6, 7 and 8 and had to repeat Grade 9.

"I had to leave school. I was teased relentlessly.

"It wasn't just pain that kept me from school, it was the people. There are still people from my old school I can't see."

Rumours spread about what was wrong. Some said she was dying, others said she was faking it. Even a supposed best friend once said: "I won't tell anyone if you're faking. Are you?"

Ravek was shocked and didn't speak to her for weeks.

Even today, she says that isolated feeling is imprinted on her, and left her weary of trusting others.

"You would think it would go away after all these years, but it follows you," Ravek says.

RSD is said to be more painful than labour and Ravek describes it as "a very intense toothache or migraine, but all over." Doctors suspect Ravek may also have fibromyalgia.

In 2003, things did get better for a short while. Once she was able to be touched, she embraced alternative therapies, including Reiki, massage, acupuncture, acupressure and creative visualization. She adopted an organic diet and took up yoga. It allowed her to greatly reduce her medications.

Things were going very well until she developed endometriosis. Up until then she had been at school almost every day and had taken up belly dancing. But after laparoscopy in February 2004, Ravek didn't move for a month.

"No one visited me," she says. "That of course brought back all those memories of (grade school). That broke me down."

Soon her depression had crept back. She couldn't concentrate and intense anxiety was setting in.

The pain's return saw her spiral downward physically and put her back to living in her bedroom. She developed an anxiety disorder and an eating disorder.

Despite their being very close-knit, Ravek withdrew and stopped talking to her family. Last June, she was admitted to CHEO's psychiatric ward in a deep depression.

"I couldn't get dressed. I stopped showering, putting on makeup, brushing my teeth. I couldn't see the point," Ravek says. "I knew I had to be taken, I knew I would do something really stupid if I wasn't in the hospital. I was afraid I would kill myself."

Self-injuring since she was 10, Ravek had taken to cutting herself. She's overdosed three times in the past year, but not with the intent to kill herself.

Since then, she's made progress. For a long time her medications were locked in a safe, but she's reached a point where she can now self-administer.

It's taken seven years, but she says she's found great doctors that have helped her cope with her pain. Today she uses OxyContin to control it, but recently got off five medications.

"I still have a lot more, but I know I need to be on these."

Family therapy is also helping her become closer with her siblings. She's even tried horseback riding with her sister.

"It killed my back," she says. "And if I'm injured, it lasts a hell of a lot longer than it would for a normal person."

Over time, she's also started to talk more to her parents.

"It's still hard," Ravek says. "You lose touch with people. I'm trying to regain those relationships. I isolated myself so much because of the depression. I didn't want to see anyone and didn't want to do anything. It's not the same relationship, but we're rebuilding."

holly.lake@ott.sunpub.com

'I wish I'd die'

Audrey Forster is nothing if not blunt.

"I just wish I could die. I make no bones about it. I live in hell."

If someone put a pill on her bed table and said it would make everything go away, "I would take it without a second thought,"says the 80-year-old. "I have chronic, acute pain without a moment of respite. There's no pleasure in my life."

An entrapped pudendal nerve has robbed her of that.

It first made itself known in April 2000 as Forster wrapped up a "swish" luncheon. As the wife of a naval officer, it was one of many she and her husband had hosted in their years together. After cleaning up, she sat on the sofa for a breather.

"When I got up, I felt a bit uncomfortable underneath," she says in her proper British accent.

At first she thought nothing of it, but it gradually got worse. She went to one specialist after another -- travelling to Toronto, Montreal and New York, and had every scan and test modern medicine could offer.

"Nothing showed up. They said there was nothing to see," Forster says.

Only to feel.

Always healthy and active, Forster was someone who moved briskly. Her pre-pain existence saw her walk two miles daily, a ritual that ended last October when a mile-long jaunt left her in agony.

Today, the frail woman spends her days in a twin bed, propped up by pillows. The only sound that breaks the silence is that of a fan oscillating at the foot of her bed.

One wall of the bedroom is comprised of two large windows and a patio door -- offering a vast glimpse of the world she can only watch go by.

On a small table covered in medications, tissues and books, sits a phone. It's her only contact with the outside world. But even that is limited, as talking exacerbates her pain.

The war bride used to meet friends twice a week to play bridge. She and her husband entertained regularly. Now eating a meal at the table is a distant memory.

"I haven't been able to sit for five years. That's a terrible fate. It means your social life is completely cut off."

Forster's many friends have also evaporated over time.

"I find people in the beginning are very compassionate,"she says. "The cup of compassion flows freely. As time goes on, the flow is slower and slower, and smaller and smaller."

That's the sad reality for many who are limited by chronic pain -- not only do they hurt, they become isolated.

Adding to Forster's anguish, this past January, her husband passed away. Two of her closest friends died suddenly a few months later.

Now the two chairs at the foot of her bed are usually empty. Forster finds herself completely alone. She wakes at 5 a.m. despite the drawn-out day ahead.

When she initially opens her eyes, there are some pain-free moments, "But as soon as I move a leg to go to the bathroom...."

For the most part, her human contact is a support worker, for whom she pays out of her own pocket, who arrives each morning and stays until noon to help with meals and chores.

Another arrives at 5 p.m., but Forster says the hours between the two seem never-ending.

She has no family here. Her brother and sister-in-law are an ocean away and unable to travel, as they're in poor health. She can't even go to her pain specialist. The doctor must come to her.

It's a devastating reality for a woman who was very healthy all her life. She ate the right food and only occasionally had a gin and tonic. A career woman until she turned 65, Forster never counted on spending her golden years in bed in misery.

"I don't know where I'm going, but I'm very afraid,"Forster says. "There's no hope ... No family. Nothing. I'm in absolute agony. Agony. I just want to pass out and stay out."

-

Dr. Ellen Thompson, an Ottawa anaesthetist who's treated chronic pain for 25 years, says when severe loneliness and chronic pain are married, it becomes difficult to treat.

It's often compounded by doctors skeptical of the terrible pain the patient complains of.

"They look at that person and say it really can't be that bad," says Dr. Roman Jovey, president of the Canadian Pain Society. "It makes things worse. They've got this pain and nobody believes them. It's no surprise patients sometimes take matters into their own hands."

While there is limited data on suicide rates among those with chronic pain, an article by a University of Florida psychiatrist eight years ago estimated the rate is likely double or triple the rate of the general population.

And certainly thoughts of suicide are more common, given at least 50% of chronic pain patients also have depression.

U.K. research has found that mood disorders and anxiety are three times more prevalent in people with widespread pain.

They go very much together, but it's unclear which comes first -- depression or chronic pain.

"That's the ultimate chicken and egg question," says Dr. Angela Mailis-Gagnon, director of the comprehensive pain program at Toronto Western Hospital. "(But) once you have depression, you're much more vulnerable to develop chronic pain."

While data may be lacking on increased suicide rates, Dr. Harold Merskey, professor emeritus of psychiatry at the University of Western Ontario, says it certainly makes sense.

Many of his patients complain they can't have friendships the way they used to. Their personal life is destroyed.

"It exacerbates things for them and humiliates them. They feel diminished," Merskey says. "I haven't seen a lot of suicides among my patients, but over the years I have seen quite a few marriages that have fallen apart."

Among children, studies show chronic pain can leave them emotionally distressed with a heightened sense of vulnerability. Low self-esteem and behavioural problems are also common.

But Dr. Patrick McGrath, a psychologist at IWK Health Centre in Halifax and the Canada Research Chair in pediatric pain based at Dalhousie University, says many children and adults can find ways to cope.

"It takes a lot of courage to do that," he says. "I think it's a mistake to think every child with chronic pain is suicidal or depressed. They're not, but (that thinking) makes it worse for them."

THE TOLL

In 2001, Dr. Dwight Moulin of the University of Western Ontario's Interdisciplinary Pain Program surveyed 340 chronic pain patients:

- 49% of respondents reported great difficulty attending social and family events

- 61% were unable to participate in their usual recreational activities

- 58% were unable to carry out their usual daily activity at home

- In a 2004 survey conducted by The American Chronic Pain Association, more than half of chronic pain sufferers reported that their pain interfered with their ability to work

- 45% said it hurt their personal relationships

holly.lake@ott.sunpub.com

Why us?

If anyone's ever told you they "feel your pain," they're lying.

No one can ever feel your pain. There is so much that comprises a pain experience, it is yours and yours alone.

It's why one person can withstand high levels of pain, while another cries out for mercy.

It's why one person can recover from minor injuries while others become stricken with chronic pain.

"There are dramatic differences in the way we cope and react," says Dr. Angela Mailis-Gagnon, director of the comprehensive pain program at Toronto Western Hospital. "That determines how much pain we feel."

In her book Beyond Pain -- Making the Mind Body Connection, Mailis-Gagnon says there is growing agreement chronic pain is multidimensional. In order to understand it, those treating it must account for its psychological, social and biological dimensions.

"You can't split the body from the mind," she says. "You can't take the emotional impact of a particular injury away. What makes a difference is not what's wrong with us but how we view it (and) the circumstances under which it happens."

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Genes play a role in our tolerance of pain.

"On average almost 50% of the variability between people is due to genes," says Jeff Mogil, a neuroscientist and professor of pain studies at McGill University.

It could even be as high as 60%.

"Similarly there are any number of infections or injuries that can lead to chronic neuropathic pain. Some people that get in car accidents develop causalgia," he says.

In fact, only 5%-10% develop chronic pain. So why do at least 90% of us heal up just fine?

"A lot of people are starting to think that people who are developing chronic pain is because they have some genetic susceptibility," Mogil says. "If you have the predisposition, but you never have the injury, you won't have the chronic pain."

It all comes down to chance.

"Who's going to get in a car accident and who isn't? And in it, are you going to injure your nerve or not? It's a lottery and the genetics are a lottery too," says Mogil, a Canadian Research Chair in the genetics of pain.

Mailis-Gagnon believes just 40% of the variability in pain tolerance, threshold and reactions comes from genes, while a person's environment accounts for 60%.

"What I have said all along is that input -- physical or emotional -- may end up altering the way the nervous system codes pain and the way a person reacts."

Dr. Karen J. Berkley, a professor of neuroscience at Florida State University who's studied neural mechanisms of pain for 35 years, says from the day a person is born their nervous system is being trained to decide what's painful and what's not, all to protect them and spur them to take action when needed.

She points to a study that interviewed people coming into emergency with horrific injuries after car crashes.

"Between 45%-50% did not hurt," Berkley says. "They started to hurt 2-3 hours later." Everyone immediately thinks shock suppressed the pain, that it was more important after a crash to get the hell out of there.

"It would be stupid for the nervous system to make you curl up into a ball and stay there," she says. "The nervous system decides what is important for you to do."

Even things that happened years ago can influence how someone copes and reacts to pain today.

"If you have a number of painful experiences as a kid in a hospital ... you're marked for life," Mailis-Gagnon says. "You will grow much more sensitive to pain."

Research indicates the same seems to hold true for little boys who are circumcised. They had far stronger negative reactions to their immunizations.

It was long thought that newborns didn't feel pain and there was a time when surgeries would be performed on them without any anesthetic. Studies have since shown that even the common practice of pricking the heels of new babies leads to increased sensitivity to pain because they were exposed to it early on.

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Like any relationship involving men and women, sex and chronic pain is complicated. There is a higher prevalence of painful diseases in women. Fibromyalgia, for instance, affects women seven times more often than men.

The question is why.

There's no doubt sex hormones play a role and act on the nervous system, but Berkley says the field is just beginning to acknowledge and trying to understand that.

"Does testosterone make you hurt more? Does it protect you? Does estrogen? It's not a simple answer. You can get yes to both of those and you can also get no," she says. "It may not be so much of how much you have of a hormone, but the combination and how they're changing. Are they increasing or decreasing? Sometimes it's a change that triggers an effect."

Women become more sensitive to pain after puberty and their pain sensitivity varies during the menstrual cycle.

Mailis-Gagnon says sex hormones play an active role in modulating the balance of neurotransmitters, which is significant because neurotransmitter abnormalities are found in some chronic pain conditions.

Women also report more depression and psychological distress, each of which are known to enhance pain, which may also explain some of the sex differences.

Mailis-Gagnon notes that serious emotional or sexual abuse multiplies the risk of developing chronic pain.

"A large number of women with pelvic pain have been subjects of abuse."

There is evidence that pain can also be learned, as is the case among children who grow up around parents or close family members who experience pain.

Dr. David Corey, president of the Health Recovery Clinic, an interdisciplinary pain program in Toronto, says he always asks patients with chronic pain if they had a family member go through a similar type of problem.

Others aren't sure if it's quite so straightforward.

Dr. Patrick McGrath, a psychologist at IWK Health Centre in Halifax and the Canada Research Chair in pediatric pain based at Dalhousie University, says it's true that modeling and reinforcement play an important role. There's no doubt if dad has a bad back and uses it to avoid work, the child is going to learn something very different than if dad does all he can to manage his pain and doesn't complain. But McGrath says physiology and psychology can't be separated.

"Family factors are important, but it's really too easy to blame the family. Psychologists are often too ready to blame mothers for anything," he says. "It's very unlikely that (experience) would cause pain without the physiological underpinning. If your mother has migraines, chances are you're going to have migraines."

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Once a person has pain, it's widely accepted that focusing on it does them no favours -- whether they dwell on it themselves or have others around them trying to help ease it.

Not only can this extend the duration of pain, it can increase the intensity. Research in Germany looking at the brain activity of patients with back pain found that when a doting spouse was in the room, the patient felt much more pain. This was measured by functional (MRI) imaging, which saw the pain lessen when the spouse left the room.

This creates a dilemma for parents of children with chronic pain, as reassurance is the most common thing to do.

"We now think reassurance may make kids' pain worse,"McGrath says. "We're not sure. It could be that it draws attention to the pain (and) encourages the kids to express pain, so he has more pain."

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There are many who believe the most powerful influence of all on how people react and cope with pain is culture and ethnicity.

While everyone feels the same initial stimulus, their threshold and tolerance can literally be worlds apart.

Here's a bite: While 99% of people in the Western world need anesthetic for dental work, only 10% of people from China do.

Childbirth is a similar story. Originally from Greece, Mailis-Gagnon says "having a kid (in Greece) is considered a natural thing, like the wind." Epidurals aren't the norm.

"I never knew what a local anesthetic was when I came here."

In other areas of the world, pain is part of life and tolerating it a sign of strength and character.

In her book, Mailis-Gagnon writes of one extreme example.

In East Africa a surgical procedure called trepanation is done without anesthetic or painkillers, and sees the patients' head muscles cut to uncover the skull. While the doctor works, the patient is awake and holding the pan to catch dripping blood.

"He doesn't feel pain, but the Westerners watching are puking," Mailis-Gagnon says.

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Some people say there is always a physical injury at the root of chronic pain. But Mailis-Gagnon says there are multiple interpretations, given that in most patients, the initial physical stimuli is not that big.

Often, it's the memory of pain that remains long after the injury has faded. That's particularly true if it was frightening or emotionally arousing.

Fear is very powerful, and coupled with a lack of understanding of what's causing pain, can exacerbate its intensity.

Mailis-Gagnon says she's seen patients who start researching their three symptoms online suddenly develop 20.

"We see pain spreading," she says. "We see that all the time. It's part of human nature."

Most people assume because they have pain, something is wrong with their body. But Corey says many types of pain, including headaches and charley horses, do no harm.

"In most cases, chronic pain conditions have a hurt but no harm attached to them," he says.

Mailis-Gagnon says once people address their fears and understand what's causing their pain, it will often shrink.

In other cases, patients disabled by their pain can get angry, anxious and depressed.

The link between pain and depression is clear. What isn't, however, is which comes first. That's because depression is more prevalent in people with chronic pain, but those with depression also have more pain.

Complicating the understanding of chronic pain even further are a minority of people in which pain arises without any physical stimuli. Instead it's brought on by thought or emotion.

Although it's an extreme example, Mailis-Gagnon refers to parts of Africa where women come in from working in the fields, deliver their children and then go back to work. Meanwhile her husband is left suffering in bed, accepting congratulations from other members of the tribe.

"He feels uterine pain, but men don't have a uterus."

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As for why seemingly small injuries can lead to such chronic, debilitating pain, one must look to the brain.

"All pain is in the brain," Mailis-Gagnon says.

More to the point, all pain perception is.

There, the filter that's been at work since the day we were born, deciding what's important to pay attention to and what can be ignored, seems to be affected in chronic pain patients.

In most people, the brain is exposed to a barrage of stimuli -- light, sound, smell and internal stimuli -- but it only pays attention to those that matter. That's what allows us to go through life.

But in pain patients, this filter is messed up. Their nervous systems become oversensitized. Things that wouldn't normally be painful develop a chronic pain reaction.

"There are changes in the brain," says Corey.

What's not clear is whether they predate the chronic pain. But whatever happens first, these changes are observable.

"There is evidence now from MRI studies that patients with chronic pain, when given a stimulus that has one reaction in normal (patients), it has a different response in those with chronic pain," Corey says.

Reducing that hyperactivity involves untraining the nervous system and can involve learning relaxation techniques, behavioural changes and guided imagery.

-

The bottom line: When pain becomes longstanding and interferes with quality of life, there's always more than just a simple injury or disease to a body part.

The complexity of chronic pain is exactly why treatment should never be based solely on an X-ray or test, Mailis-Gagnon says.

"More than anything else, mind and body are interconnected. If you don't put them together, you don't see pain as a whole," says Mailis-Gagnon.

holly.lake@ott.sunpub.com

A city that won't hear you scream

Dr. Linda Wynne doesn't have chronic pain, but her frustrations are certainly ever present.

As half of the chronic pain program team at the Ottawa Hospital's Civic campus, the anesthetist's only colleague is another anesthetist. Together, they have to be all things to all patients. It's much the same at the General, although there is a psychiatrist who spends half a day a week with patients.

The clinics are this way despite research that has repeatedly shown chronic pain patients are best served when cared for by a comprehensive, integrated, interdisciplinary team.

"It's entirely draining trying to do a job you feel out of your depth doing," Wynne says. "I feel out of my depth dabbling at times in psychology or physiotherapy, when I'm an anesthetist, because (patients) don't have anybody else."

In the past four years, five doctors have called it quits at the hospital's two pain clinics. Wynne says they simply burn out.

A hospital patient satisfaction survey found that poor pain management was the No. 1 complaint. Neither is it surprising considering the chronic underfunding and the fact the clinics have had resources stripped.

Fifteen years ago, the Civic clinic at least had a psychologist and physiotherapist, but budget cuts saw them eliminated.

"(Now) we have far less than we ever did," Wynne says. "And the pain problem has exploded."

The Civic has a two- to three-year waiting list, while the General campus' new patients are primarily from the adjacent cancer centre.

"I know a lot of general practitioners aren't bothering to send their patients," Wynne says. "The general feeling in the community is that the pain clinics are closed (to new patients)."

Compounding the problem is the fact that once a patient is seen at the pain clinic, Wynne says they're having a difficult time getting them back into the community once they no longer need a specialist or tertiary care.

"Family doctors are refusing to take them back," she says. "It's the single largest problem we face."

With resources in short supply, seeing the same patients for numerous follow-ups doesn't allow time to see new patients.

"That's the reason we have a 2-3 year waiting list," Wynne says. "We do try and fast track in things that we know if we can get quickly we can make a huge difference. But it's difficult with limited resources."

This all led to an external review of the hospital's chronic pain services. The report, published in February 2004, echoed the programs' critics in stating they were significantly behind many Canadian and Ontario cities where multidisciplinary pain programs exist. Such an approach simply didn't exist here. Further, the review said Ottawa's single approach has less successful patient outcomes.

"The Ottawa Hospital has more than a 20-year history of providing very limited and now out-dated services to patients with chronic pain," the report stated. "These services have failed to become more comprehensive over the years."

With thousands of patients in the region not being treated by anyone specialized in the field of chronic pain management, the authors said the current resources are inadequate to meet the needs.

Limited financial support over the years and the fact there is no advocate for chronic pain management on any administrative level have left the clinics in distress themselves.

As they don't spend every day of a week working in the clinics, physicians generally work in isolation, with little ability to interact and discuss complex patients and treatment plans.

There was also criticism of the limited and failed attempts to integrate the programs at both campuses and the fact there was no clear leader or champion for such an integration.

The authors recommended the programs at the Civic and the General join in one location within a year, then integrate with the chronic pain program at the Rehabilitation Centre -- which was deemed to be providing a "somewhat comprehensive approach" -- to create a state of the art regional program.

That sat atop the list of recommendations as it would allow more patients to be seen and treated appropriately. The authors went so far as to say there was no justification to maintain both programs as they currently exist, as neither provides the care patients need.

Of the General: "Current referral access to the unit is so poor the unit would not be missed if the unit ceased to function."

The chronic underfunding and lack of facilities, equipment and personnel will all take a financial commitment to remedy - something the review called for.

But there is some doubt as to whether the commitment will be there. Dr. Ellen Thompson is an anesthetist at the Ottawa Hospital who has treated chronic pain patients for 25 years. She says the hospital just doesn't see managing chronic pain as part of its mandate.

"No other teaching hospital in Ontario has adopted that thinking," she says. "It's quite a remarkable stance for them to take. There is a lot of not very pretty politics behind that."

Thompson disagrees with "this idea that we're helplessly lost without a big, multidisciplinary pain clinic."

She says studying research and gathering with experts in the field at international conferences to learn best practices could do a lot of good as well.

"It's so simple to get results (when you know what you're doing)," Thompson says.

She alleges that some working within the programs believe people should just learn to live with their pain.

As someone who has chronic back pain herself, she says that's just not realistic.

"I know I couldn't live with it. When pain is a nine or a 10 on a pain scale, nobody can."

She goes to her family doctor for effective treatment and says the reality of just how far behind Ottawa is is a "very sad situation."

"The community definitely needs to know that if there is misery, there's a reason for that. (The lack of timely access to appropriate care) guarantees that anyone with the genetic disposition to become chronic will. It's horrendous."

When asked if the hospital sees this as part of its mandate, Wynne says: "No it doesn't. It says it does."

But actions have always spoken louder than words. In the new critical care wing under construction at the General campus, space has been designated to accommodate a new multidisciplinary pain clinic. But that's it.

"Should we get funding for a psychologist, physiotherapist, occupational therapist and advance practice nurse, we have space to put them in," Wynne says. "What (the hospital) hasn't committed to is the personnel for the approach. I don't think the hospital feels it has the funds to help us."

Dr. Homer Yang, the chief of anesthesiology, says the hospital is trying hard, but year after year finds itself in a financial struggle.

"(It's) one of the most efficient hospitals, so it has less fat," he says. "In essence, we are suffering for that. It doesn't see chronic pain as a priority in a sense that there are so many other acute care issues."

While the hospital is said to have taken the findings of the review seriously, no substantial changes have been made.

"There are a lot of competing interests," Yang says, pointing to a shortage of beds and resulting cancelled surgeries.

"So in a sense I understand. I'm not blaming the hospital, given the fiscal realities."

Wynne says the hospital is also in a bit of a dichotomy. It's in its interest to get doctors to do as much as possible because the hospital doesn't have to pay them -- the province does through fee for service. But if any of the additional staff needed to have a multidisciplinary approach were hired, including the two advanced practice nurses recommended by the external review, their salaries would have to come out of the hospital budget.

"A lot of the pain management doesn't have to be physician-run, but it happens to be here. I do my best to be there, knowing they'd be better served (by others)," Wynne says.

The Rehabilitation Centre, which is part of the Ottawa Hospital and home of its own chronic pain program, has "a lot of what we feel we're missing," Wynne says. "But they're just keeping their heads above water. They can't help us."

The centre's intensive three-week program includes a psychologist, nutritionist and occupational therapist, but it too has been stripped financially and had inpatient beds closed.

Yang says right now everyone's hopes are pinned on the proposal they plan to submit to the ministry this fall. They want the government to recognize that Ottawa is in a unique situation and respond accordingly with funding. Unlike residents of southern Ontario who have pain clinics in Toronto, Hamilton and London, in Eastern Ontario, Ottawa is it.

"We are the only game in town," Yang says. "If we don't see the patient, the patient is stuck."

The only other options are driving several hours to Montreal or Kingston. Given the Ottawa clinics' current situation, Yang admits it's fair to say they're failing patients.

"I can only give you the impression that it's probably true," he says. "We don't have data or means to even track outcomes, but by and large the impression is we could do better. That's for sure."

One of the things that needs to happen, Yang says, is that triage has to be centralized so that they know who needs to go where. They also need to better measure outcomes.

Wynne says in the end everyone knows that to provide a decent service to patients, more money is needed for equipment and personnel.

"All the people we need exist within the hospital. Give us some money and we can get things up and running very quickly," she says. "We know what we want in personnel and we know what we want them to do."

The irony is that research has shown investing in proper pain management in the short term cuts other health care costs in the long term. Treating correctly and early is best.

"Workers' compensation knows that. They know it's cheaper to get (patients) treated and back to work," Wynne says.

When patients don't receive the care they need, it's the start of an expensive bounce around the system in search of help.

"It's in such shambles," Wynne says. "The government doesn't see the vast amount of money spent on patients because their pain is poorly managed."

Those costs rack up from emergency room visits, unnecessary tests and time with the wrong specialists, among other things.

The tragedy is that it wouldn't cost a huge amount of money to improve pain management by magnitudes. Half a million dollars "could make an unbelievable difference to health care in the city," Wynne says.

It would get people back to work, keep seniors independent and lift some of the burden on the health care system.

"It's having the foresight to see that. Hopefully with enough pressure, (government) will begin to see they can do better."

Family doctors also need to do more, Wynne says. The hospital cannot make things better on its own. In an ideal world, the pain clinic would be a place for GPs to consult while handling patients' day-to-day care.

To get to that point, education is needed within the community.

"It's just a question of getting the family doctors to buy into if you treat pain properly, it can be very rewarding. You can do a great service to your patients."

"The hospital has a role to play, but the pain clinic's role is not to give every Tylenol-3 to the whole of Ottawa Carleton -- which is what family doctors would like to see," Wynne says. "That's not the best use of resources. A large percentage of the work we do could be done in the community."

For his part, Yang sees this as a transition period.

"Certainly I'm optimistic that if we push hard enough it will get better. We just need to make our case cogent and strong enough."

holly.lake@ott.sunpub.com

Politics hurts

The treatment of chronic pain may be lacking in many areas, but one thing there is no shortage of is politics.

Research has repeatedly shown that comprehensive, interdisciplinary teams are the most effective in treating chronic pain. These encompass physical, functional and psychological treatment approaches and involve a wide range of health care professionals.

But in most parts of the country, they are few and far between. Among those that do exist, the waiting lists can run 2-3 years.

Those who understand chronic pain know treating properly and treating early are key.

Dr. David Corey, president of the Health Recovery Group, an interdisciplinary pain program in Toronto, says in Alberta the Workers' Compensation Board has picked up on this.

Back in 1996, the board started focussing on soft tissue injuries, which are what comprise most work- and motor vehicle-related injuries, and ensured patients received interdisciplinary care within a month of their injury.

The goal was to see if the number of people ending up on long-term disability could be reduced.

The board met with a great deal of success, Corey says, as it was able to reduce incidence of long-term disability by two-thirds -- from 9% down to less than 3%.

"They've been able to carry on with that ever since," he says. "That's one thing we haven't yet picked up on (in Ontario). They know about it (here) and they're working on it, but it's not happening. They're just not as far along."

There the government divided the province into regional health authorities and several of them, including Calgary, have developed interdisciplinary clinics to treat pain.

"We haven't done that kind of thing," Corey says.

In fact, in Ontario, any of the clinics that were doing chronic pain management 10 years ago have pretty much shut down.

Even longstanding clinics find themselves struggling for survival in an age of financial strain.

"What we have is a system that pays for treatments like injection and opioids and other treatments for which there is minimal evidence of long-term efficacy," Corey says. "And the programs that are demonstrated to be effective aren't being funded."

Strong political decisions need to be made on how best to manage these problems, he says, as it's a costly problem and one that will only cost more as the population ages.

Alberta's experience indicates it's possible to alleviate some of the financial pain.

"It suggests to me that if you can break into the problem early enough, you can block the development of chronic pain," he says. "(But) it's kind of the lost child of the system. We're probably behind mental health."

In Ontario, any of the clinics doing chronic pain management 10 years ago have pretty much shut down.

holly.lake@ott.sunpub.com

One remedy

A GROUP of Ottawa doctors has a plan they hope will ease some of this city's chronic pain.

Early next month, Dr. Ellen Thompson and a group of colleagues plan to open a "triage" that will involve a group of specialists, including neurosurgeons, spinal surgeons, anesthesiologists and general practitioners.

It will essentially be a sorting centre, screening patients with back pain to see where they will be best served.

The specialists' goal is not to just treat patients where they should be, in turn avoiding unnecessary surgeries and testing, but to get them treated sooner.

"Our goal here is to prevent chronic pain. We can prevent people from becoming chronic if we treat early enough," Thompson says. "There is that window of opportunity while their pain is still acute. We want to get at them while they're still tractable."

That's why they want to see those who've developed back pain within the last six months, or preferably the last three, and do a proper investigation.

Currently, many patients are sent for CT scans and MRIs on which nothing ever shows up. Sometimes it's because the patient has asked for the scan, in other cases it's because the doctor doesn't know what else to do.

Thompson says 75% of CT and MRI scans done for spinal pain should never have been done in the first place. That's because in anyone over the age of 45, the spine will show some abnormality, which is part of the aging process.

In other individuals, something may show up on a tiny, unimportant nerve, and again, the patient or doctor may push for surgery.

Many times, these unnecessary surgeries often lead to more pain. In the case of back pain, Thompson says a maximum of 10% of patients should ever see a surgeon.

"Surgeons have been drowning in inappropriate referrals."

The group will initially work out of the Canadian Back Institute. Ultimately, however, Thompson feels they should be in a hospital or university setting. They hope to be up and running in early November and Thompson says she's optimistic about what they can accomplish.

"This should save a lot of money and grief, as well as demands for surgery, which can make them worse, not better," she says.

holly.lake@ott.sunpub.com

The battle back
Fibromyalgia knocked Nortel exec down, but life balance and refusal to stay down have him dancing again

David Mann believes life is to be lived, not tolerated and suffered.

Diagnosed with fibromyalgia in 1995, he has refused to let himself become a prisoner of it. Instead he tends to push until it hurts, then he'll let himself pull back.

"You still have to enjoy life," he says.

And that he does. But it took him some time to traverse the process to get him to this point.

Mann came to Canada in 1994. As the chief engineer for Bell Northern Research and general manger of broadband business for Nortel, he had two demanding jobs. One would have been plenty, particularly once fibromyalgia became a factor.

Work involved travelling and time changes that would have been tiring for anyone, but trying to keep up while living with fibromyalgia took every ounce of Mann's energy and wore him out.

Travelling to Boston every week, Dallas every two and Europe at least once a month, he slept just three nights a week in his own bed.

"Sitting in long marathon meetings was extremely tough with muscle pain. You're tired, the subjects are stressful and you're in pain," he says, recalling the mountains of notes he was forced to take on everything. "Trying to concentrate was very difficult. You start getting down on yourself."

The troubles of his first year were complicated by the fact he was depressed because no one could help him. Yet he says he was amazed with how well he adapted to the situation he found himself in.

"Each year I was coping better. My mind stepped up to the task," Mann says.

But in other areas, seemingly insignificant challenges took a toll. While not being able to find car keys would seem trivial to most, Mann says when you're already struggling to get back to being yourself, small things wear on you.

"All those little events make you angry. Getting angry makes you feel more pain," he says. "You get in a vicious cycle. It's a cycle you have to break."

Yet recognizing that can take time. In Mann's case, he figures it was a 2-3 year process. In the meantime, his focus on keeping up at work left him miserable.

"The people at home, they get the worst of you. For Elizabeth, it was very tough," Mann says of his wife.

"I just felt so bad physically and psychologically."

By 1997 he realized he had to change his ways. He became the VP of technology, a job he enjoyed.

"I knew I couldn't keep up the pace I was keeping. I think it's a realization anyone with a lot of pain has to get to -- it's not going away," he says. "I'm lucky the company treated me well."

He worked until 2001, when he retired early at 55, though he had always planned to work until he was 58.

Leaving work lifted a weight and left him feeling he'd taken back control of his life. Up until then he'd felt knocked around by pain -- while a day might start out great, it could turn hellish in a moment.

"I had this bizarre notion if I took the stress away, the pain would go away," Mann says. "It didn't, but it's still a big difference when you're not at someone's beck and call."

Though it had taken him several years, Mann realized he had to rebalance his life. He set about establishing parameters and coming to terms with what he could no longer do.

Chronic pain often robs people of things that make them feel good about themselves and to offset that Mann returned to hobbies that had brought him pleasure. Among them was photography.

"When I look through the lens of my camera, I can turn my pain off."

His wife had always wanted to ballroom dance and while Mann says he never had any desire to learn, he went for her and now loves it himself. "It takes your mind away from the pain."

Today he is resolute with his time planning and says the three pillars that keep him steady are sleep, exercise and nutrition. Unless those are under control, things tip.

The medical community doesn't have a lot to offer, which can leave people in despair. Despite this, Mann decided long ago he wouldn't spend a lot of his time researching online.

"It's an additional psychological burden you have to carry. (But) you have to figure out how to cope," he says.

"The more you focus on pain, the more pain you have."

Since retiring, Mann has spent time volunteering with FM-CFS Canada, an organization created by patients and physicians dedicated to advancing education, research and treatment.

He's spoken to hundreds of organizations and support groups, feeling he has something to contribute.

"I think it makes you feel better. It's important to not just be complaining about having pain, but to be helping find ways to solve it.

"I'm not ashamed. I'm not faking this. I didn't do this to myself. Why should I have to hide this like some dark satanic secret. I own what I have. I don't feel I should have to lock it up in a cupboard like some bubonic plague."

That's not to say he doesn't have miserable days. On overcast days he says he's "fit to be tied."

"I'm not looking for someone to blame for this. I have no idea what brought it on and I'm not looking back. I'm looking for hope, so how do I adapt myself? I have a lot of determination. I'm not going to give up and go down without a fight."

He's encountered many people who are mad as hell over the chronic pain that plagues their days. And while he understands why they are this way, he says they're not channelling that energy to help themselves. And if you're not helping yourself, you can't complain that no one else is.

"It's just driving you further down a dark hole. I'm not pretending it's easy. I have days I get very far down that hole, but you have to recognize that and stop digging."

WHERE TO GO

Information on support groups, research and initiatives:

- Canadian Pain Coalition

www.painhurtscanada.ca

- Canadian Pain Society

www.canadianpainsociety.ca

- FM-CFS Canada

www.fm-cfs.ca

- The National ME/FM Action Network

www.mefmaction.net

- The Arthritis Society

www.arthritis.ca

- Chronic Pain Association of Canada

www.chronicpaincanada.org

- American Pain Society

www.ampainsoc.org

- American Chronic Pain Association

www.theacpa.org

- The Reflex Sympathetic Dystrophy Syndrome Association

www.rsds.org

holly.lake@ott.sunpub.com

Patients work with doctors to help find better ways to manage chronic pain

Chronic pain has no face.

Tens of thousands of Canadians -- 29% of the population-- live with it, but they largely remain invisible.

"The public will ask, where are all these people?" says Dr. James Henry, scientific director of the Michael G. DeGroote Institute for Pain Research and Care at McMaster University. "They're at home. They can't go to school or work. There are all kinds of reasons why pain doesn't have a face."

And giving it one is half the battle.

There are still doctors who believe chronic pain exists only in the minds of the malingering. Some patients accept their pain as a part of getting old. Others are told they hurt because of a disease that ails them. Henry says chronic pain has always been treated as secondary to something else and that must end.

"It's a disease unto itself," he says. "It's a bio, psycho, social disease. It should not be seen as secondary. Irrespective of how it comes, you need to deal with pain."

The system must treat patients as whole beings who have social and spiritual lives they need to get back to, and get away from what's driving them towards depression and suicide.

Just last month, Richard Holden, a former Quebec politician, jumped from his Montreal balcony. In a note, he said chronic back pain had taken away his desire to live.

Over the years, Holden, 74, had tried to alleviate his pain with no success. Patient groups point out that even a well-known figure from a wealthy community couldn't get help for pain.

"The bottom line is we have a moral responsibility to do something about it," Henry says. "The situation is just too grave, the suffering is just too great."

This country finds itself well-positioned to make a difference as a research leader in the field.

"I share everyone else's optimism that we're on the cusp of radical change," Henry says. "We're going to be seeing and treating chronic pain in new and refreshing ways."

Research must continue, but the findings must be put into practice. On that front, Henry's trying to bring together pain management professionals and researchers with people who are involved in knowledge translation.

He's also seeking funding to set up a nationwide ambassador program that recruits patients into the process of understanding and treating chronic pain.

"You've got to accept that if they tell you they're in pain, they are," Henry says. "When we talk about knowledge translation, we're talking about everybody."

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Like changing perceptions, treatment of chronic pain involves no shortage of challenges.

Dr. David Corey, president of the Health Recovery Group, an interdisciplinary pain clinic in Toronto, says patients can generally reduce their pain by 22%.

"That's not a cure by any means, but it's an improvement."

On average, function improves by 40% and depression and anxiety by 25%, while 58% of patients reduce or eliminate their pain medications.

"In 25 years, I can only remember one case where the person had a complete elimination of pain," Corey says.

In the treatment world, the comprehensive, multidisciplinary approach is the gold standard,

"In all, I don't argue. But try to get into a clinic," says Dr. Roman Jovey, president of the Canadian Pain Society, adding the number of comprehensive clinics in Canada can be counted on two hands. Waits span years in most cities. In rural areas, clinics simply don't exist.

Then there are physicians who believe they shouldn't do anything unless they can provide the best treatment. But Jovey says doctors can prescribe drugs and should.

"Fully accepting it's not magic, it's not for everybody, but at least if you're going to do a piece of it, do it well."

The pain society has set training as a priority to educate GPs about how they can help their pain patients.

And as for multidisciplinary clinics, Jovey says even those that are well-established have to fight for survival.

"The problem is the government thinks in silos," he says.

It fails to see the costs that chronic pain patients rack up by not being treated early and properly.

Forced to retire early by fibromyalgia, David Mann says the Canadian government needs to be honest about chronic pain.

"The problem is overwhelming and the progress has been underwhelming," he says. "The minister (of health) needs to stand up in the House of Commons and acknowledge the problem. Right now these people feel abandoned."

With so many people affected by chronic pain, Mann says the United Kingdom admitted there was no way its health service could keep up. To assist new patients, it established an expert patient program, enlisting the help of patients who've learned to cope well with their pain. They in turn share that knowledge with new pain patients.

Jovey says it will take someone at the top to identify chronic pain as a priority and drive the process.

But like Henry, he says there are glimmers of hope.

"Progress in our understanding of pain is proceeding in leaps and bounds," he says.

The University of Toronto has started a week-long pain education program that involves medical, dental, nursing, pharmacy and occupational and physical therapy students.

While not as good as integrating pain into medical school curriculum, Jovey says it's a start.

Chronic pain patients are also becoming more vocal.

Formed in 2002, the Canadian Pain Coalition is comprised of patients, health professionals and scientists. It's created a Charter of Pain Patients' Rights and has started an annual Pain Awareness Week. This year it runs from Nov. 7-12.

Henry is excited that patients are part of driving change. He says for people to appreciate what chronic pain is, its prevalence and the economic cost, it must have a face.

At McMaster, it will also soon have a building. Thanks to a $20-million gift, the Michael G. DeGroote Institute for Pain Research and Care will be the first building in the world devoted entirely to pain, with the words written on its side.

"It gives a huge visible presence to the issue of chronic pain," Henry says. "I'm very determined we're going to bring about change. There's a huge need, a crying need. It's actually a shame."

WE ASKED YOU

Question 1. The part of my body where I feel the most pain on a regular basis is:

BACK: 36

JOINTS: 28

HEAD: 12

NECK: 12

NONE: 12

Question 2. When I feel pain for an extended period of time, I ...

TAKE A PAINKILLER: 40

ALTERNATIVE THERAPIES: 6

SEE A DOCTOR: 30

SUFFER IN SILENCE: 24

Polls conducted on ottawasun.com

holly.lake@ott.sunpub.com