This syndrome, which is celebrated on Tuesday as World Pain Day, is characterized by chronic pain. Patients feel that treatments and care are inadequate.
Fibromyalgia: “How to get bone pain”
Blandine Bouedo called her pain “H21.” “The other three hours were when I slept. And I slept because I was exhausted,” she says. This 55-year-old psychiatric nurse suffers from fibromyalgia. A syndrome characterized by chronic pain throughout the body, fatigue, and sleep disturbances, which is Tuesday. According to the French National Authority for Health (HAS), between 1.4% and 2.2% of French people suffer from fibromyalgia, with women accounting for 80% to 90% of cases. “It feels like it hurts inside the bones, as if you were receiving electric shocks,” Blandine says.
His first pains appeared in the late 1990s, but he admits he didn’t pay much attention to them. They began to become disabling in 2007, and by the spring of 2012, “I lived through eighteen months of descent into hell. Everything was painful for me, from the roots of my hair to the tips of my toes. You couldn’t touch me anymore, I couldn’t walk. I was exhausted, I woke up tired or more than lying down. Painkillers, taken in high doses, do nothing. Blandine lives with an intensity of pain that she rates at 6 or 7 out 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 handicap.”
A loss of social life is common in fibromyalgia. Because they are excluded from many activities that cause pain, and because the procession, sometimes incredulous, stops and disappears. “If we say we have migraines or toothaches, people understand.” But the constant, diffuse pain that barely leaves you breathless is unimaginable, explains Carole Robert, president of the Fibromyalgia France association. Thirteen years ago, I thought I had multiple sclerosis: for thirteen years, I had aroused compassion. When I received a fibromyalgia diagnosis, I was suspicious. People asked me, “Are you sure you’re sick?”
This same skepticism exists among doctors, who believe that fibromyalgia is all in the head. “We have training focused on rationality. But here we have neither cause nor treatment, which leaves the doctor with his handicap, “explains rheumatologist Jean-Luc Renevier, who is very aware of the syndrome. Because fibromyalgia remains largely a mystery. There are “many hypotheses” about its origin, but “none have proven its reality,” says the rheumatologist. The most confusing thing is that there is no injury or inflammation to explain this persistent pain. On X-rays, everything is normal. What we do know is that the brain with fibromyalgia does not adequately filter pain. The World Health Organization has recognized fibromyalgia since 1992, the National Academy of Medicine affirms that it is a fight to be taken seriously and published a report on the policy in 2010 that is credible in the eyes of many doctors.
The nurse “sent me to an emergency psychiatric hospital”
In addition to the lack of knowledge, “there is a reluctance to treat [patients] because it takes time,” laments Dr. Renevier. The response is often made with (many) medications. Painkillers, therefore, but also antidepressants. “They give us medication, but they don’t listen to us,” denounces Blandine Bouedo. Because of all these treatments, the liver has suffered serious damage, even doctors have spoken of its involvement. Fibromyalgia treatments not approved in France (unlike in the United States, for example) are often prescribed for depression, which does not help patients accept their situation and feel recognized.
Fibromyalgia medications often boil down 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 no longer take care of us, they inject us with morphine and leave us in a corner,” laments Blandine Bouedo. This common behavior can be dramatic. Carole Robert had to go to the emergency room for a heart condition, and “at 1:30 p.m., the nurse convinced me I was psychic and sent me to an emergency psychiatric hospital. They all agreed it was my head.” This supposed imaginary heart condition was actually atrial fibrillation. A few months later, Carole Robert had a stroke.
Fibromyalgia cannot be cured, and a minority of patients respond to painkillers. However, non-medicinal methods (relaxation, qigong, balneotherapy, etc.) are increasingly being tested. “We think less about the pain, we free the mind,” explains Carole Robert. This is precisely why Blandine Bouedo talks about her past pain. “I still feel pain, but I’m not suffering anymore.” I’m not at rock bottom with dark thoughts. “She welcomes the disability caused by her syndrome and has started training in Qigong, with the aim of creating an association for people suffering from chronic pain. She, who used to spend between 300 and 400 euros per month on medication, now pays only 38 euros for her acupuncture sessions.
