Blandine Bouedo called it pain “H21”. “The other three hours were when I slept. And I slept because I was exhausted, ”he says. This psychiatric nurse, 55, has fibromyalgia. A syndrome characterized by chronic pain throughout the body, fatigue and sleep disorders, which is Tuesday. According to the Haute Autorité de Santé (HAS), 1.4% to 2.2% of French people have fibromyalgia, women in 80% and 90% of cases. “It’s like it hurts inside the bones, like I’m getting electric shocks,” Blandine said.
His first pains appeared in the late 1990s, but he admits that he did not pay much attention. They began to become disabled in 2007 and in the spring of 2012, “I lived eighteen months of descent into hell. Everything hurt, it was from the root of my hair to the tip of my feet. You couldn’t touch me anymore, I couldn’t walk anymore. I was exhausted, I woke up so tired or more tired than lying down. Painkillers, ingested in large doses, do nothing. Blandine lives with a pain of intensity that evaluates to 6 or 7 of 10. Without stopping. “The only thing we have in mind is pain, the only thing we can talk about is pain.”
“This puts the doctor in front of his disability.”
The loss of social life is traditional in fibromyalgia. Because they are excluded from many activities, the sources of suffering and the environment, sometimes unbelievers, are depleted and disappear. “If we say we have migraines or toothache, people understand it.” But the constant and diffuse pain, which leaves little breathing, cannot be imagined, says Carole Robert, president of the Fibromyalgia association. France. Thirteen years ago, I thought I had multiple sclerosis. For thirteen years, I raised compassion. When I was diagnosed with fibromyalgia, I aroused suspicion. People told me: “Are you sure you’re sick?”
This same skepticism exists among doctors, who believe that fibromyalgia is in the head. “We have training focused on rationality. But here we have no cause or 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 are “many assumptions” about its origin, but “none has proven its reality,” said the rheumatologist. The most disconcerting thing is that there are no injuries or inflammation to explain this persistent pain. On radios, everything is normal. What we do know is that the fibromyalgia brain does not filter enough pain. The World Health Organization has recognized fibromyalgia since 1992. The National Academy of Medicine said it was a struggle to be taken seriously and issued a credible 2010 policy report in the eyes of several doctors.
The nurse “sent me to an emergency psychiatric hospital”
In addition to the lack of knowledge, “there is reluctance to care for patients because it takes a long time,” says Dr. Renevier. The answer is often made with (several) medications. Antalgic, therefore, but also antidepressants. “They give us drugs, but they don’t listen to us,” denounces Blandine Bouedo. Due to all these treatments, the liver suffered serious damage, even doctors talked about their participation. The Fibromyalgia treatments that have no marketing authorization in France (unlike the United States, for example) are often prescribed for depression, which does not favor patients to accept their situation and feel recognized.
Fibromyalgesics are often reduced to your syndrome: if you have pain, if you have a problem, it can only be due to fibromyalgia. “In an emergency, from the moment we say” fibro “, they don’t take care of us, inject us with morphine and leave us in a corner,” laments Blandine Bouedo. Frequent behavior, which can be dramatic. Carole Robert had to go to the emergency room for heart disease and, “at 1:30 pm, the nurse convinced me that I was a psychic and sent me to an emergency psychiatric hospital. Everyone agreed that it was my head. This so-called imaginary heart disease was actually atrial fibrillation. A few months later, Carole Robert had a stroke.
Fibromyalgia cannot be cured and a minority of patients respond to pain relievers. On the other hand, non-medicinal methods (relaxation, qigong, balneotherapy …) are increasingly tested. “We think less of pain, we have the spirit released,” says Carole Robert. This is precisely the reason why Blandine Bouedo talks about his past pains. “I always feel pain, but I no longer suffer.” I am not at the bottom of the well with black thoughts. “She welcomes the disability due to her syndrome, she began training Qigong, with the aim of creating an association for people suffering from chronic pain. She, who spent between 300 and 400 euros a month on drugs, only pays 38 euros for her acupuncture sessions.