ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Calgary doctor helps write guidelines for treatment of Fibromyalgia
Wednesday 8 May 2013
Calgary doctor help write guidelines for treatment of chronic pain disorder
Patients suffer pain, fatigue, moodiness
Some days, Cheyenne Steffen feels like she could die from the pain. On her worst days, she wants to.
Steffen, 44, has fibromyalgia.
It’s a debilitating, chronic condition that has baffled doctors and researchers. People suffering from the condition have widespread pain throughout the body, fatigue, mood disorders and sleep problems. There’s no clear test to prove a patient has fibromyalgia. The cause is unknown and there is no cure.
“Nothing helps. Nothing touches it,” Steffen said of the sharp pain that feels like her muscles are ripping.
“I don’t know how I can keep toughing through it. There has to be some better way to manage pain like that.”
About three per cent of Canadians suffer from fibromyalgia — a condition that, up until two decades ago, was still considered of “suspect validity,” with sufferers still sometimes being told the pain was all in their heads.
But on Monday [6 May], researchers released the first set of Canadian guidelines to help doctors diagnose and manage the condition, with a summary published in the Canadian Medical Association Journal.
The evidence-based guidelines are the first national set in the English-speaking western world, said Dr. John Pereira, a co-author of the guidelines from the University of Calgary’s faculty of medicine and a physician at the Calgary Chronic Pain Centre.
“For many years health-care professionals dismissed fibromyalgia as a non-existent condition. And more recently, while people have accepted that perhaps it does exist, still patients were told there was nothing that could be done for them,” Pereira said.
“In these guidelines we have clearly listed how to diagnose this condition and how to treat it effectively. So while there’s no cure for fibromyalgia, there are now good treatments that patients can consider.”
Because of the prevalence of the condition, the guidelines recommend that primary care physicians take over the diagnosis and management role that has often been left to specialists.
The guidelines suggest a combination of treatment options such as exercise, cognitive-behavioural therapy, education, self-management and relaxation techniques as well as medications that target a patient’s most bothersome symptoms: pain being the most serious.
The goal of treatment is to improve symptoms and “optimize function,” according to the guidelines. There is no one ideal treatment, although the guidelines say management should be tailored to each patient’s symptoms.
“Currently, there is no cure for fibromyalgia, but the guidelines set out the most appropriate management strategy,” said rheumatologist Dr. Mary-Ann Fitzcharles, a corresponding author from the Research Institute of the McGill University Health Centre.
The condition mostly affects women. Females are affected around six times more often than males. Sufferers can often go years without a proper diagnosis and treatment. Symptoms can fluctuate over time and rarely disappear, the guidelines note.
Steffen was diagnosed three years ago, after a battery of tests to rule out a host of other conditions.
Since then, she’s had to quit her job and the activities that used to give her joy: horseback riding, working out with her husband, travel, exploring the mountain backcountry. Instead, she spends her time trying to manage her symptoms.
Fibromyalgia is like a roller-coaster, Steffen said. She’s never pain-free, but some days she’s well enough to rake some leaves or putter around in her garden. But then the next day she might spiral into a four-day flare-up where she can hardly get out of bed, she said.
The pain she feels can be everywhere but tends to settle in her neck, shoulders and legs. She takes a combination of pain medications that provide some relief. She finds the only way to keep her severe, nearly weeklong flare-ups limited to just one or two a month is to lead a very quiet, careful, stationary life.
It’s been a difficult adjustment for the former jet-setting marketing and communications manager.
“I had a great career,” she said with a chuckle.
“I’m only 44. We always think we’re going to work until we’re 60 or something, but that was cut quite short.”
The full guidelines are available online.
The above originally appeared here.
blog comments powered by Disqus