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Life of pain is now past
Wednesday 4 May 2011
Life of pain is now past
There is no cure for fibromyalgia, but the symptoms can be eased
Marilynn Graham has embarked on her second decade living with fibromyalgia - a serious but mysterious medical syndrome that once flattened her with migrating pain, deep fatigue and brain fog.
"I know what it feels like being in so much misery you want to die," she says. But now she has been symptom-free since 2004 and feels "wonderful."
The provincial civil servant is not cured - there is no cure - but she attributes her current good health to trial and error of techniques to minimize the pain and stress and maximize life balance and sleep. And another crucial component: the courage to unload the emotional baggage that had weighed down her body, mind and spirit for decades.
"If it works, I don't care what it is," says the 55-year-old, who cites everything from weekly massage therapy to prescribed heavy doses of the anti-depressant amitriptyline. She also cuts out sugar, caffeine and alcohol. "I know, hideous," she says in her Saanich townhouse where she now enjoys taking care of herself and others after a 40-hour work week - a marked difference from her previous life.
"I was all work and no play," she says. "Did I neglect my family?
Absolutely." She describes her former self as "ferocious, independent, frantic and frenetic."
She's ashamed to say that she was once "the dragon lady -I had no idea how my behaviour affected my colleagues or people I lived with."
Had she not been felled by fibromyalgia, she could still be an unrelenting type-A personality working 80 hours a week.
As that workaholic perfectionist, she went 13 years without taking her holidays as a federal public servant, behaviour she says arose from never feeling good enough to please her strict disciplinarian dad. He once ordered her to the basement and whipped her with a hose for spilling soup when she was seven, she recalls.
Graham was strong enough to decide as a child not to be defined by the basement ordeal and instead prove she was lovable and worthwhile.
"Work became my life." As a result, she acknowledges letting down her daughter, whom she adores. Being out-of-touch meant her first husband announced he was leaving her in 1993 just after what she considered a second honeymoon.
In 1998, her mother, to whom she was very close, died at 66.
A year later, the stabbing pain came on.
Graham believes the over-work, the battening down of childhood traumas, the family disintegration and her mother's death played havoc with her body.
"A lot of people will feel a tap on the shoulder," she says. "I needed a sledgehammer."
Graham has written nearly 300 pages of a manuscript, has a literary agent and hopes to find a publisher this year for Fibromyalgia Isn't for Sissies. It has given purpose to her illness and she hopes it will provide hope for others that feeling much better -even well -is possible.
There are already more than 50 books on fibromyalgia listed with the Greater Victoria Public Library and more than 100 on Amazon.ca. But there's "not a true life account," says Graham, who sees her story as both a survival guide for others and one woman's personal and triumphant story.
Moreover, fibromyalgia research has grown quickly in recent years to include more than 4,000 peer-reviewed scientific papers, says the U.S.based National Fibromyalgia Association.
The province recently committed $2 million toward a B.C. clinical and research study aimed at screening, diagnosing and treating patients with complex chronic diseases including fibromyalgia, Lyme disease and chronic fatigue syndrome. It is expected to get underway by fall.
An underlying infectious agent is a leading suspect in these illnesses, which can cause extreme fatigue and pain, trouble sleeping and stiffness, notes the Ministry of Health.
Mary Brownscombe, coordinator of the 250-member Fibromyalgia Networking Group of Greater Victoria, says Graham's approach to the disease appeals to her interest in "people who take a positive and personal approach to working out a management [plan]."
"Fibromyalgia is all about management and it is different for everybody," she says, adding she's looking forward to reading the book.
Twenty years ago it was "fibro-what?" she recalls.
"Now it's 'Oh, yes, I have several friends who have that.' " Yet one of the constants people with fibromyalgia face is the fact that many symptoms are invisible.
Brownscombe developed fibromyalgia in 1990. Her trigger -and there are all kinds of traumas that qualify -was a cascade of complications she developed after undergoing surgery to remove extra ribs. She ended up on a disability pension instead of returning to a job she loved at the Royal B.C. Museum.
There is tremendous variation in individual symptoms with the exception of a diffuse kind of pain, spread throughout the body -"like the worst flu you have ever had," she says.
Some people are symptom-free for two or three years, or have found techniques that keep it at bay -with the primary one being an acknowledgment that "life is going to be different," she says.
Brownscombe's brother, son and daughter also have fibromyalgia, but the great majority of sufferers are women.
Back in 2001, it didn't take Graham's physician long to diagnose fibromyalgia and prescribe amitriptyline. She takes vitamin B and magnesium malic acid compound but hasn't found other often-suggested remedies such as valerian, melatonin or black cohosh to be helpful. Acupuncture has been so-so, reflexology helped a bit, and reiki and energy work didn't do much for her.
Exercise is frequently prescribed for fibromyalgia, but was "agony" for Graham, who was able to hire a fitness coach to help with a personal program.
Now? "I'm doing a full fitness regime with cardio and strength training and [can walk] for miles and miles."
One of the lessons she has learned is how to just be in the moment. "Before fibromyalgia, I was always about doing -checking off a long list," she says.
"But my counsellor asked me, why don't you think about being, not what you are but who you are?"
For Graham, it boiled down to giving up feeling she had to be in control in order to truly feel her personal power.
The above originally appeared here.
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