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Fibromyalgia: “Learning to live with the omnipresence of pain”

On the occasion of World Fibromyalgia Recognition Day, Léa looks back on the three years of medical wandering she had to face before putting a name to her pain.

Léa, a 25-year-old woman, was diagnosed with fibromyalgia in 2011, three years after developing the syndrome. “Fibromyalgia is having pain everywhere, all the time, without a minute’s respite,” explains Léa. This orphan disease characterized by diffuse and multiple pains, mainly in the muscles and joints, is often accompanied by sleep disorders, fatigue and mood disorders. The responsible cause is not identified and no treatment exists. In France, it is estimated that this syndrome affects 2 to 3% of the population, i.e. up to 2 million people.

At the end of 2008, when she had just started studying psychology in Toulouse, the young woman fell ill. “At first it was a simple winter virus. But after a month, I couldn’t get up in the morning, so I started asking myself questions,” says Léa. The one described by a childhood friend as “hyperactive and always happy” before the illness, becomes “amorphous” and spends her days sleeping.

From specialist to specialist

The doctor treating the young woman then multiplies the medical analyzes, in vain. “It was hell! I was in pain, I even had to give up college and all my hobbies, but the doctor couldn’t find anything,” she recalls. She doesn’t know it yet, but a real obstacle course awaits Léa. She navigates from specialist to specialist, but none of them is able to issue a diagnosis. “One day an immunologist told me very curtly that I had to think about going to see a psychologist… It upset me, not a day went by that I didn’t cry! Fortunately my doctor, my family and my friends knew that it was not psychosomatic”, she explains visibly moved.

Despite the pain, this classical music lover holds on, she rests during the day, when all her friends are at university, and goes out with them at night to “feel alive”. In 2009, Léa decided to resume her studies. “I had to take the catch-up because of my repeated absences but I succeeded in my year,” she exults. It was then that her attending physician directed her to the pain center at the Joseph Ducuing hospital in Toulouse.

“I was ready to hear everything as long as I had a diagnosis”

After four months of waiting to get a first appointment, Léa meets a “gentle and understanding” algologist (pain specialist, editor’s note) who will spend more than an hour asking her questions. The specialist evokes several hypotheses, including fibromyalgia, and prescribes new examinations. Léa then sees a glimmer of hope. “None of these assumptions were pleasing in themselves but I was ready to hear everything, as long as I had a diagnosis. The worst is not knowing, you feel helpless, “said the young woman.

In 2011, after ruling out all other diseases and confirming the existence of pain points specific to fibromyalgia, Léa finally got the diagnosis she had been waiting for. “It was less of a relief than I had hoped in the end because I knew it meant that I could not recover from it,” recalls Léa.

“You have to learn to live with the omnipresence of pain”

Once she understood that she couldn’t fight this disease, Léa decided to accept it. “I put it into perspective by telling myself that it was not a fatal disease, that I was lucky that it was not very severe in me because some people affected are disabled and can no longer work”, explains the young woman. Today, she realized her dream of becoming a child psychologist. She goes to the physiotherapist once a week, takes symptomatic treatment every day and has learned to live “with the omnipresence of pain despite more difficult phases”.

Léa hopes that this world day will lead France to recognize this disease, as the World Health Organization did in 1992, so that it can be better diagnosed and treated. Rallies took place Thursday in several major French cities while the National Assembly’s social affairs committee on May 4 unanimously authorized an investigation into fibromyalgia.

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