This syndrome, which is Tuesday of World Day, is characterized by chronic pain. Patients feel that treatments and care are not up to standard.
Fibromyalgia: “How To Have Bone Pain”
Blandine Bouedo called it “ H21′- pain. The other three hours was 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 disturbance, which is Tuesday. According to the High Authority of Santé (SAH), between 1.4% and 2.2% of the French are fibromyalgia, women in 80% and 90% of cases. “It looks like it hurts bones, like electric shocks,” says Blandine.
His first pains appeared in the late 1990s, but he admits that he paid no special attention to him. They began to be eliminated in 2007 and spring 2012: “I lived eighteen months down to hell. Everything was painful for me, 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 got up as tired or more than going to bed . Painkillers, taken in high doses, do nothing. Blandine lives with a pain of intensity that she rates at 6 or 7 out of 10. Nonstop. “The only thing we have in mind is the pain, the only thing we can talk about is the pain.”
“This puts the doctor before your disadvantage”
The loss of social life is traditional with fibromyalgia. Because they are excluded from many activities, the sources of pain and because the entourage, sometimes incredulous, run out and leave. “If we say we have a headache or a toothache, people will understand.” But the constant, diffuse pain that leaves almost no relief is not possible to imagine , says Carole Robert, president of the Fibromyalgia Association in France. Thirteen years ago I thought I had multiple sclerosis: for thirteen years I had sympathy. When I was diagnosed with fibromyalgia, I became suspicious. People told me, “Are you sure you’re sick?”
The 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, this puts the doctor facing his disability, ” says rheumatologist Jean-Luc Renevier, very aware of the syndrome. Why fibromyalgia remains largely a mystery. There are “many assumptions” about its origin, but “none has proved its reality”, says the rheumatologist. The most confusing thing is that there is no injury or inflammation to explain this persistent pain. On the radios, everything is normal. What we do know is that the fibromyalgia brain does not filter pain sufficiently. Fibromyalgia has been recognized by the World Health Organization since 1992, the National Academy of Medicine says it is a fight that needs to be taken seriously and published a report in 2010 on policies that are credible in the eyes of many doctors.
The nurse “sent me to an emergency mental hospital”
In addition to lack of knowledge, “there is a reluctance to care [patients] because it takes too long,” complains Dr. Renevier. The answer is often made with (many) medications. Antalgic, therefore, but also antidepressants. “They give us medicine, but they don’t listen to us , ” complains Blandine Bouedo. During all these treatments, the liver was badly damaged, even doctors talked about being part of it. ” Fibromyalgia treatments without a marketing authorization in France (as opposed, for example, in the United States) are often prescribed for depression, which does not help patients to accept their situation and feel recognized.
Fibromyalgia is usually reduced to your syndrome: if you are in pain, if you have a problem, this can only be due to fibromyalgia. “In emergency situations, from the moment we say we’re ‘fibro,’ they don’t take care of us anymore, give us a morphine injection and leave us in a corner,” laments Blandine Bouedo. Frequent behavior can be dramatic. Carole Robert had to go to the emergency room because of a heart problem and: “At 1:30 pm, the nurse convinced me that she was a psychic and sent me to an emergency mental hospital. Everyone agreed it was my head . This supposed imaginary heart condition was actually atrial fibrillation. A few months later, Carole Robert suffered a stroke.
Fibromyalgia cannot be cured and a minority of patients respond to painkillers. On the other hand, non-medicated methods (relaxation, qigong, balneotherapy, etc.) are increasingly being tested. “We think less about pain, we have the spirit that is released,” says Carole Robert. This is precisely why Blandine Bouedo talks about her past pains. “I’m still in pain, but I’m not suffering anymore.” I’m not standing at the bottom with dark ideas. ” She receives disability because of his syndrome, began training with Qigong, in order to create an association for people with chronic pain. She, who spent between 300 and 400 euros a month on medicines, now pays only 38 euros for her acupuncture sessions.