With pain disorders, looks can deceive

“So many doctors didn’t know about (fibromyalgia). They kept sending me to psychiatrists who asked why I didn’t like school.”

Alice Norton can think of only one word to describe her daughter Phoebe’s descent into debilitating pain and fatigue. “Horrible,” she says.

“Phoebe had constant pain in her back, neck and head. She couldn’t do anything. She was home all day and missed almost two years of school. Sometimes she would sleep all day and be up all night. We would go to the doctor two to three times a week, trying to get help. We tried everything we could possibly think of, but nothing made a difference.”

A year after being told that Phoebe fit some of the criteria for fibromyalgia – a musculoskeletal disorder associated with deep muscle pain, fatigue and disturbed sleep – Alice found herself down at the Hospital for Sick Children “sobbing and begging for help.”

Phoebe’s diagnosis was confirmed and the 13-year-old was referred to Bloorview MacMillan Children’s Centre’s inpatient pain service – “a structured program that aims to get these kids back into a more normal routine,” says physiotherapist Lisa Engle. “We don’t promise that the pain and fatigue will get better. Our goal is to make the children more active participants in society and better able to manage their pain. Historically, the only treatment they’ve received is medicine-based.”

Phoebe stayed at Bloorview MacMillan for four weeks, following a daily program that included regular wake-up and bed times, exercise in the pool and on a bike and treadmill, occupational and physical therapy and social work counselling. She also attended our onsite school with regular rest breaks that were reduced as she became better able to manage.

“A structured routine with sleep and wake times and cardiovascular exercise is key to getting the sleep problems – which can exacerbate pain – in order,” says occupational therapist Dana Driesman.

Counselling focuses on the emotional effects of chronic pain. “Quite often children are scared that they won’t be able to make changes, that this is the way life is going to be,” says Elaine Smith, social worker. “They can feel hopeless. Some feel anxious because they wonder why this is happening to them.” Most clients have missed a year or more of school and are isolated at home “with a much smaller circle of friends,” Elaine notes.

Phoebe says the most helpful part of Bloorview MacMillan’s pain program was the recognition that she had a legitimate health problem. “This is something real and the people at Bloorview know that. They know that even though I may not look like I’m in pain, I am. So many doctors didn’t know about (fibromyalgia). They would look at me and say you don’t look sick. They kept sending me to psychiatrists who asked why I didn’t like school.”

Alice echoes her daughter’s frustration about getting a diagnosis. “Many doctors had dismissed it – suggesting Phoebe was depressed, lazy or having problems at school, or that I wasn’t strict enough,” Alice says. “At Bloorview, there was no question of us doing something wrong. The focus was on getting better and what made a huge difference was that the people there believed they could get her back on her feet. We both felt an overwhelming sense of relief.”

While in the program, Phoebe’s pain decreased and her sleep improved. When she went home, she was able to return to school. “Getting her up and moving was very important, because she hadn’t been getting out of bed and as a result her muscles had atrophied,” Alice says.

Phoebe still has pain, but she knows how important exercise, diet and sleep are to managing it. “No matter what, I have to get up in the morning and I have to go to bed early – there’s no staying up late,” she laughs, noting this is no easy feat for a teenager. “I need to have regular cardio exercise. Going to school and walking around isn’t enough. During the Christmas holidays I started to go to bed later and get up later and then I went downhill again.”

Phoebe recently came back for a short stay at Bloorview MacMillan. “The problem isn’t totally solved, and we still don’t have a cause for any of this, but we know how to control it,” Alice says. “We also know that if she ever gets really bad, she can go to Bloorview and get the help she needs.”