This syndrome, which is Tuesday the 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 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 whole body pain, 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 the bones, like it gets electric shocks,” says Blandine.
His first pains appeared in the late 1990s, but he admits that he did not pay any special attention to him. They started to be eliminated 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 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, 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 before his handicap”
The loss of social life is traditional with fibromyalgia. Because they are excluded from many activities, sources of pain and because the entourage, sometimes unbelieving, is exhausted and leaves. “If we say we have a migraine or a toothache, people will understand.” But the constant and diffuse pain, which leaves hardly any respite, is not possible to imagine , says Carole Robert, president of the Fibromyalgia France Association. Thirteen years ago I thought I had multiple sclerosis: for thirteen years I had aroused 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 a training focused on rationality. But here we have no cause or treatment, it puts the doctor before his handicap, “ 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 thing 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 brains of fibromyalgia do not filter the 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 has issued a report in 2010 on policies that are credible in the eyes of various doctors.
The nurse “sent me to an emergency psychiatric hospital”
In addition to the lack of knowledge, “there is a reluctance to care [patients] because it takes a long time,” Dr. complains . Renevier. The answer is often made with (many) medicines. Antalgic therefore, but also antidepressants. “They give us medicine, but they don’t listen to us , “ Blandine Bouedo complains. Through all these treatments the liver was badly damaged, even the doctors talked about being part of it. ” Fibromyalgia treatments without a marketing authorization in France (as opposed to, for example, the United States) are often prescribed for depression, which does not help patients accept their situation and feel recognized.
Fibromyalgia is often reduced to your syndrome: if you have pain, if you have a problem, this can only be due to fibromyalgia. “In emergency situations, from the moment we say we are” fibro “, they no longer take care of us, they give us an injection of morphine and leave us in a corner,” Blandine Bouedo regrets. Frequent behavior 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 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 pain killers. On the other hand, non-drug methods (relaxation, qigong, balneotherapy, etc.) are increasingly being tested. “We think less about pain, we have the spirit that is liberated,” says Carole Robert. That is precisely why Blandine Bouedo talks about her past pains. “I am still painful, but I am not suffering anymore.” I am not standing at the bottom of the pit with black ideas. ” She welcomes the disability due to her syndrome, started training with Qigong, with the goal of creating an association for people with chronic pain. She, who spent between 300 and 400 euros a month on medication, now pays only 38 euros for her acupuncture sessions.