Ce syndrome, qui est mardi, journée mondiale, se caractérise par des douleurs chroniques. Les patients estiment que les traitements et les soins ne sont pas à la hauteur.
Fibromyalgie: «Comment avoir mal à l’intérieur des os»
Blandine Bouedo appelait sa douleur «H21» . «Les trois autres heures, c’est quand j’ai dormi. Et j’ai dormi parce que j’étais épuisé », raconte-t- il . Cette infirmière psychiatrique de 55 ans souffre de fibromyalgie. Un syndrome caractérisé par des douleurs chroniques dans tout le corps, de la fatigue et des troubles du sommeil, qui est le jour du mardi. Selon la Haute Autorité de Santé (HAS), entre 1,4% et 2,2% des Français sont fibromyalgiques, des femmes dans 80% et 90% des cas. «C’est comme si ça faisait mal à l’intérieur des os, comme si ça recevait des décharges électriques», explique Blandine.
Ses premières douleurs sont apparues à la fin des années 1990, mais il admet qu’il ne lui a pas prêté une attention particulière. Ils ont commencé à être handicapés en 2007 et, au printemps 2012, «j’ai vécu dix-huit mois de descente aux enfers. Tout était douloureux pour moi, ça allait de la racine de mes cheveux jusqu’au bout de mes pieds. Tu ne pouvais plus me toucher, je ne pouvais plus marcher. J’étais épuisé, je me suis levé aussi fatigué ou plus que couché . Les analgésiques, ingérés à fortes doses, ne font rien. Blandine vit avec une douleur d’intensité qu’elle évalue à 6 ou 7 sur 10. Sans s’arrêter. “La seule chose à laquelle nous pensons est la douleur, la seule chose dont nous pouvons parler est la douleur.”
«Cela met le médecin devant son handicap.»
The loss of social life is traditional in fibromyalgia. Because they are excluded from many activities, sources of pain and because the procession, sometimes incredulous, ends and disappears. “If we say we have migraines or a toothache, people understand it.” But the constant and diffuse pains, which hardly leave a breath, can not be imagined , says Carole Robert, president of the Fibromyalgie France association. 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, 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 sufficiently filter the pain. The World Health Organization recognizes fibromyalgia since 1992, the National Academy of Medicine says it is a fight that must 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 [of patients] because it takes a long time,” laments Dr. Renevier. The answer is often made with (many) medications. 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 severely damaged, even the doctors talked about their participation. The 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 inject us with 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 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 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 pains from the past. “I still feel pain, 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.
