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The French National Federation Associations of Fibromyalgia
FNAFF
Who are we?
Our Federation gathers French regional associations which work towards a common end: the fight counters Fibromyalgia, rhumatologic disease chronic, evolutionary and invalidating, recognized by the World Health Organization since 1992, and concerning more than 2% of the general population of any age.
This disease involves diffuse muscular pains, a fatigability with the effort, sleep disorders and daily sufferings. These sufferings, which are sometimes the subject of the scepticism on behalf of the entourage, cause at the people who are the victims a feeling of humiliation, a reaction of deep abatement or revolt.
In spite of the projections which could be noted so far, Fibromyalgia is ignored still too much in France.
To fulfill the mission which it set, our Federation implements actions so:
To make known Fibromyalgia at the national level as well near the medical profession, medical para, as by the authorities, the Social security and the COTOREP;
To establish bonds between the research centers and the looking after teams;
To coordinate the actions of associations members, for the realization of their goals;
To diffuse with associations members of the data elements on Fibromyalgia or the centralization of these elements;
To develop notes or publications intended to inform the public or the patients with the agreement of the doctors concerned;
To represent the whole of associations members at the time of the steps achieved near the authorities or in front of the media;
To personify the French community of the fibromyalgic patients as well as the people interested by this disease, in front of persons or entities foreign implied in the knowledge or the treatment of Fibromyalgia or in front of foreign associations of patients.
The objectives of our associations members are primarily centered on a support of proximity for fibromyalgic so:
to gather the people reached of Fibromyalgia to bring to them all useful information as well as a moral support for themselves and their families;
to establish bonds between the looking after teams, the patients and their families and to collaborate with the Cases of Social security of the Sickness insurance and the COTOREP;
to sensitize the public opinion with the problems arising from Fibromyalgia;
to help the medical action in the field of Fibromyalgia and the close syndromes;
to create contacts with the organizations and associations, in France and abroad, having similar objectives.
President: Mrs. Janine GARAU
THE FIBROMYALGIA
What It EAST?
More than 2 % of the population of the industrialized countries, 70 % of women, 30 % of men, complain about chronic pains, often handicapping, rebels with the successive treatments, frequently associated a major tiredness and sleep disorders, this one being not repairer.
In the majority of the cases, they are FIBROMYALGIA, or, if the pain is localised, myofascials syndromes. This disease is recognized by the World Health Organization since 1992.
How is the fibromyalgia presented?
Variable and diffuse pains
The most significant first and of the symptoms is the pain, which preferably touches the areas close to the spinal column: the nape of the neck, shoulders, the area interscapulary, scapulas, lombes, hips. It can also reach the knees. The patients complain to have "badly everywhere".
But these unexplainable pains can also begin, or prevail, on only one area, and from there, diffuse with other parts of the body. When the pains sit on the level of the nape of the neck, they are accompanied by migraines repeated, more or less intense. The pains, sometimes felt as diminish or of the muscular tensions, are more frequently described like a feeling of burn, more or less diffuse; at other people, they seem caused by thousands of punctures of needles.
With graves by the effort, tiredness, the cold, the stress, these pains can change during the day, from one day to another, week to another. They can be painful at the point to block the achievement of the daily gestures.
The second symptom is a persistent asthenia, variable of the simple lassitude until a true exhaustion, appearing as of the morning, worsened by the effort, the domestic tasks, or a normal occupation.
With this tiredness which can be tested like a total loss of the forces, sleep disorders are added. Effectiveness of the sleep, i.e. the total time of sleep reported to the time spent to the bed, is reduced. The repetition of microphone-awakenings not perceived by the patient reflects the fragmentation of the sleep and maintains a sleep surface and nonrepairing.
In addition to the pain, tiredness of the migraines and sleep disorders, the patients frequently present digestive disorders, with a table of irritable intestine (colopathy).
Fibromyalgia and depression?
Certain authors regard the depressive tendency as another of the symptoms of the fibromyalgia. In fact, this depression, when it is present, often reactional, is caused by the successive therapeutic failures, or the scepticism of the medical profession or the entourage of the patient. It does not seem to constitute the primary cause of the fibromyalgia, but enters rather within the framework of the associated symptoms. In very many cases, there is not true depression, but a concern in front of an incomprehensible health.
How is made the diagnosis of the fibromyalgia?
In spite of the intensity of the pains, the clinical examination does not show any sign of articular inflammatory attack or neurological deficit.
The medical imagery, radiographies, the IRM and the usual tests of laboratory are normal or not very significant; but the attentive examination of cutaneous fabrics of the patient makes it possible to distinguish the existence of precise points, more painful, more significant, whose digital inspection requires the competence of a specialist in this pathology.
In any event, today the fibromyalgia cannot in no case to be indexed within the framework of the rare or orphan diseases.
Which are the causes of the fibromyalgia?
They are still unknown; however it is noted that this disease generally appears after a traumatism, either physics like a traffic accident or a surgical operation, or after an emotional shock or a series of stress, or after one period of overwork.
The key factor of the disease seems to be a dysfunction of the system of modulation of the pain which prevents certain stimuli from becoming painful feelings.
This abnormal perception which transforms any significant zone into a source of pains involves, by its chronicisation, painful funds invalidating, person in charge for disentrainment muscular, itself responsible for a loss of force and an incapacity to the least effort.
The origin of this disorder is probably related to transmitter substances present in the brain, serotonin and the substance P, without one still knowing why these neurotransmitters are disturbed.
Which is the treatment of the fibromyalgia?
Currently, the majority of the medicamentous treatments do not bring improvement sufficient. Analgesics have a modest effectiveness, whatever their power. Although no study makes it possible to affirm it, the experiment shows that morphine very often ineffective and is badly tolerated.
This disease, because the clinical signs are not very characteristic, the mechanisms and the discussed or ignored identifying information, often involves successive, many, expensive examinations and without results, of the ineffective or harmful treatments, the abusive hospitalizations.
In front of the impotence of the doctors, even specialists, to relieve them the patients wander from one doctor to another, in the search of a diagnosis and therapeutic.
The fibromyalgia constitutes a true plague well as well on the level human and medical as social and financial.
If you want more informations, contact us, please:
FNAFF
131, RESIDENCE LES PERLES D'AZUR
RUE HERMAND PUJOL
11210 PORT LA NOUVELLE FRANCE
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