Fibromyalgia: “How to have pain in the bones”
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), fibromyalgia represents between 1.4% and 2.2% of French, women in 80% and 90% of cases. “It’s like it hurts inside the bones, as if it’s getting electric shocks,” said Blandine.
His first pains appeared in the late 1990s, but he admits he did not pay close attention to him. They started to be disabled in 2007 and in the spring of 2012, “I lived eighteen months of descent into 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. He was exhausted, I got up as tired or more than going to bed . Analgesics, swallowed in large doses, do nothing. Blandine lives with a pain of intensity that she evaluates to 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.”
“It puts the doctor in front of his handicap”
The loss of social life is traditional in fibromyalgia. Because they are excluded from many activities, sources of pain and the entourage, sometimes incredulous, is exhausted and goes away. “If we say that we have migraines or toothache, people understand it.” But the constant and diffuse pains, which leave little respite, can not be imagined , explains Carole Robert, president of the association Fibromyalgia La France. Thirteen years ago, I thought I had multiple sclerosis: for thirteen years I had aroused compassion. When I was diagnosed with fibromyalgia, I aroused suspicion. People said to me, “Are you sure you’re sick?”
This same skepticism exists among doctors, who consider that fibromyalgia is in the head. “We have training focused on rationality. But here we have no cause or treatment, 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”, said the rheumatologist. The most puzzling 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 enough pain. Fibromyalgia has been recognized by the World Health Organization since 1992. The National Academy of Medicine said it was a fight 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 a reluctance to take care [patients] because it takes a lot of time,” says Dr. Renevier. The answer is often made with (several) drugs. Antalgic, therefore, but also antidepressants. “They give us drugs, but they do not listen to us ,” denounces Blandine Bouedo. Because of all these treatments, the liver was badly damaged, even the doctors talked about being part of it. “The Fibromyalgia treatments that have no marketing authorization in France (unlike the United States, for example) are often prescribed for depression, which does not help patients to accept their situation and to to 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 case of emergency, from the moment we say” fibro “, they do not take care of us any more, they give us an injection of morphine and leave us in a corner”, regrets 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 she was psychic and sent me to an emergency psychiatric hospital. Everyone agreed that it was my head . This supposedly imaginary heart disease 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 painkillers. On the other hand, non-medicinal methods (relaxation, qigong, balneotherapy …) are more and more tested. “We think less about pain, we have the spirit released,” says Carole Robert. This is precisely the reason why Blandine Bouedo speaks of her past pains. “I’m always sore, but I’m not suffering anymore.” I’m not at the bottom of the well with black thoughts. ” She welcomes the disability due to her syndrome, she started training Qigong, with the aim of creating an association for people with chronic pain. She, who spent between 300 and 400 euros a month on drugs, only pays 38 euros for her acupuncture sessions.