This syndrome, which is Tuesday, world day, is characterized by chronic pain. Patients feel that treatments and care are not up to par.
Blandine Bouedo used to call her “H21” pain. “The other three hours were when I slept. And I slept because I was exhausted, “he says. This 55-year-old psychiatric nurse has fibromyalgia. A syndrome characterized by chronic pain throughout the body, fatigue and sleep disorders, which is the day of Tuesday. According to the Haute Autorité de Santé (HAS), between 1.4% and 2.2% of French people are fibromyalgia, women in 80% and 90% of cases. “It feels like it hurts inside the bones, like it’s getting electric shocks,” says Blandine.
His first pains appeared in the late 1990s, but he admits that he did not pay special attention to him. They began to be disabled in 2007, and in the spring of 2012, “I lived eighteen months of descent to hell. Everything was painful for me, it went from the root of my hair to the tip of my feet. You could not touch me anymore, I could not walk anymore. I was exhausted, I got up as tired or more than going to bed . Analgesics, swallowed in high doses, do nothing. Blandine lives with a pain of an intensity that she 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.”
“It puts the doctor in front of his disability”
The loss of social life is traditional in fibromyalgia. Because they are excluded from many activities, sources of pain and because the entourage, sometimes incredulous, is exhausted and moves away. “If we say we have migraines or a toothache, people understand it.” But the constant and diffuse pains, which hardly leave any respite, it is not possible to imagine , says Carole Robert, president of the association Fibromyalgie France. Thirteen years ago I thought I had multiple sclerosis: for thirteen years, I had aroused compassion. When I was diagnosed with fibromyalgia, I awoke suspicions. People told 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 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 proved its reality”, says the rheumatologist. The most confusing is that there is no injury or inflammation to explain this persistent pain. In radios, everything is normal. What we do know is that the brain of fibromyalgia does not filter the pain enough. Fibromyalgia is recognized by the World Health Organization since 1992, the National Academy of Medicine says it is a fight to be taken seriously and has published a report on the policy in 2010 that is credible in the eyes of several doctors.
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 takes a long time,” laments Dr. Renevier. The answer is often made with (many) drugs. Antalgic, therefore, but also antidepressants. “They give us medicines, but they do not listen to us , “ denounces Blandine Bouedo. Due to all these treatments, the liver was badly damaged, even the doctors talked about taking part of it. ” Treatments for fibromyalgia that do not have marketing authorization in France (unlike the United States, for example) are often prescribed for depression, which does not help patients 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 emergencies, from the moment we say we are” fibro “, they no longer take care of us, they give us an injection of morphine and they 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, “at 1:30, the nurse convinced me that she 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-medicinal methods (relaxation, qigong, balneotherapy …) are tested more and more. “We think less about pain, we have the spirit that is liberated,” says Carole Robert. That is precisely the reason why Blandine Bouedo talks about her past pains. “I’m still painful, but I’m not suffering anymore.” I’m not at the bottom of the well with black ideas. ” She welcomes the disability due to her syndrome, she began to train Qigong, with the aim of creating an association for people with chronic pain. She, who spent between 300 and 400 euros a month on medication, now only pays 38 euros for her acupuncture sessions.