Blandine Bouedo used to call her pain her  “H21” . “The other three hours was when I slept. And I slept because I was exhausted, “she says. This 55-year-old psychiatric nurse has fibromyalgia. A syndrome characterized by widespread chronic pain throughout the body, fatigue and sleep disorders, which is Tuesday the world day. According to the Haute Autorité de Santé (HAS), between 1.4% and 2.2% of French people are fibromyalgia, women in 80% to 90% of cases. “It feels like it hurts inside the bones, as if receiving electric shocks,” says Blandine.

Her first pains appeared at the end of the 90s, but she admits that she did not pay particular attention. They began to be disabling in 2007, and in the spring of 2012,  “I lived eighteen months of descent into hell. Everything was painful to me, it went from the root of my hair to my toes. You could not touch me anymore, I could not walk anymore. I was exhausted, I woke up as tired or more than going to bed . The analgesics, swallowed in high doses, do nothing. Blandine lives with pain of an intensity that she evaluates to 6 or 7 out of 10. Non-stop. “The only thing we have in mind is pain, the only thing we can talk about is pain.”

“It puts the doctor in front of his incapacity”

The loss of social life is traditional in fibromyalgia. Because they exclude themselves from many activities, sources of pain, and because the entourage, sometimes incredulous, exhausts itself and moves away. “If we say we have migraines or toothache, people understand. But constant, diffuse pains, which leave hardly any respite, it is not possible to imagine , notes Carole Robert, president of the association Fibromyalgie France. Thirteen years ago I thought that I had multiple sclerosis: for thirteen years, I had awakened compassion. When I was diagnosed with fibromyalgia, I aroused suspicion. People would say to me, “Are you sure you’re sick?”

This same skepticism exists in doctors, who consider that fibromyalgia is in the head. “We have a training focused on rationality. But here we have neither cause nor treatment, it puts the doctor in front of his disability, “ says rheumatologist Jean-Luc Renevier, very aware of the syndrome. Because fibromyalgia remains largely a mystery. There is  “full of assumptions”  about its origin, but  “none has proven its reality”, says the rheumatologist. The most confusing being that there is no lesion or inflammation to explain these persistent pain. On radios, everything is normal. What we do know is that the brain of fibromyalgia does not filter pain enough. Fibromyalgia has been recognized by the World Health Organization since 1992, the National Academy of Medicine states that it is an evil to take seriously and the HAS issued an orientation report in 2010 that has credibility in the eyes of a number of physicians.

The nurse “sent me to an emergency psychiatric hospital”

In addition to the lack of knowledge,  “there is a reluctance to take care [patients] because it is very time-consuming,”  laments Dr.  Renevier. The answer is often made with (many) drugs. Antalgic, therefore, but also antidepressants. “We are given medication, but we do not listen to us , denounces Blandine Bouedo. Because of all these treatments, I had the liver very damaged, the doctors even talked about taking away a piece of it. “ Treatments for fibromyalgia do not have marketing authorization in France (unlike in the United States, for example) and are often prescribed for depression, which does not help patients to accept their situation and to feel recognized.

Fibromyalgics are often reduced to their syndrome: if they have pain, if they have a problem, it can only be because of fibromyalgia. “In emergencies, from the moment we say we are” fibro “, they do not take care of us any more, they give us an injection of morphine and leave us in a corner,”  regrets Blandine Bouedo. Frequent behavior, which can be dramatic. Carole Robert had to go to the emergency room for a heart condition and,  “in 1:30, the nurse convinced me that it was psychic and sent me to an emergency psychiatric hospital. Everyone agreed that it was my head . This supposedly imaginary heart condition was actually atrial fibrillation. A few months later, Carole Robert had a stroke.

Fibromyalgia can not be cured and a minority of patients respond to analgesics. On the other hand, non-medicated methods (relaxation, qigong, balneotherapy …) are more and more proven. “We think less about pain, we have the spirit that is released,” says Carole Robert. It is precisely because of this that Blandine Bouedo speaks of her past pains. “I’m still painful, but I’m not suffering anymore. I’m not at the bottom of the hole with black ideas, “ She welcomes. Disability because of her syndrome, she began training qigong, with a goal: to create an association for people with chronic pain. She who spent between 300 and 400 euros a month on drugs, now only pays 38 euros for her acupuncture sessions.