Fibromyalgia is a very real disease, which is characterized by the simultaneous appearance of a series of chronic pain (headaches, intestinal disorders, feeling of stiffness, fatigue, etc.). Still denigrated, despite its recognition by the WHO in 1992, it would nevertheless affect several million French people, for whom sometimes the simple fact of carrying a shopping bag can turn out to be a real ordeal. Why does this disease struggle to gain recognition? Where is scientific research at? How do some relatives or caregivers consider it to be purely psychological? Explanations at the dawn of World Fibromyalgia Day, on May 12, with the assistance of Dr Florence Tiberghien, doctor specializing in pain in Haute-Savoie.
“ This poorly understood chronic pain syndrome, often denigrated, source of suffering and numerous medical and socio-professional consequences, deserves to be recognized, listened to and relieved ”, argues Florence Tiberghien, pain doctor at the Alpes-Léman hospital, in Haute-Savoie. -Savoie.
Chronic pain concerns at least 12 million French people and it is 2 to 3 million people who are directly affected by fibromyalgia. It would affect mostly women, only a third of patients are men. Unfortunately, the management of this disease is not up to par when we know the virulence of the symptoms. Nevertheless, the public debate leaves an increasingly important place to the words of the patients.
Fibromyalgia: a complex diagnosis
It is sometimes difficult to be diagnosed with fibromyalgia. In fact, there is no test, strictly speaking, to clearly identify this disease. However, additional examinations may be prescribed by the doctor in order to rule out other pathologies (blood test, radiology).
The diagnosis will therefore be established based on the symptoms experienced by the patient . It is the general practitioner himself who will make the diagnosis.
“Fibromyalgia is in the mind of the patient”, a false maxim
Many relatives (friends, family …), even doctors, unable to clearly identify the causes of the disease through supported medical examinations, find themselves disconcerted in the face of patients. They struggle to understand their sufferings because they are, for the time being, scientifically unprovable. There are no physical or organic lesions associated with the pain. A crucial question then arises: does the disease take on a psychological aspect ?
Indeed, a traumatic event is often the trigger for fibromyalgia (depression, surgery, emotional separation, etc.). On the other hand, the pain is unfortunately very real. “ We also know that the body is the place of expression of emotions. And if this pain was not the witness of an emotion, of a suffering? ”, Asks Dr Florence Tiberghien.
Many patients experience anxiety attacks for fear of being confronted with pain, and a vicious cycle can then form: pain leading to pain. These anxiety attacks are, in part, responsible for the gap between fibromyalgia patients and some doctors. A phase of depression is also often felt in patients.
Fibromyalgia: a hampered professional life
68.5% of patients consider that fibromyalgia is an obstacle to their professional life in 2015, according to the Fibromyalgia SOS association . In the most severe cases, the pain is such that it is impossible for the patient to continue his work.
All physical trades are impacted, from the bartender to the carpenter. The latter must then give up their job if the pain is too persistent. It is often difficult for the employer to accept fibromyalgia. In addition, the changes in working conditions are quite derisory and require the respect of a whole heavy administrative process.
Towards better care
A clear progression has nevertheless taken place, patients with fibromyalgia are more recognized and their voice has overall more weight in the public debate.
Fibromyalgia is not recognized as an occupational disease as such because it is not sufficiently homogeneous. However, many adjustments to working conditions are possible. A file must be drawn up by the patient and sent to the House of Handicapped Persons in his department so that teleworking can be proposed, for example.
In addition, fibromyalgia is not fully covered by health insurance. Indeed, there are both severe and milder forms of the disease. Fibromyalgia is not homogeneous. It is therefore impossible for health insurance to guarantee 100% coverage for all patients. However, if fibromyalgia is associated with another disease, then coverage is 100% guaranteed. In addition, health insurance, on its website, has now written a sheet on fibromyalgia . Advance allowing this disease to obtain more authority, credit. It contains all the elements to find out about it.
Fibromyalgia: a strong mobilization to support patients
Many associations have seized on the syndrome providing real support to patients. Indeed, these associations make it possible in particular to de- dramatize fibromyalgia. Today in France there are more than ten associations on fibromyalgia (Association FibromyalgieSOS, Association Fibromyalgie France, Association Française du Syndrome de Fatigue Chronique…).
Finally, many structures specializing in chronic pain have emerged in France. These structures are called CETD (center for the study and treatment of pain). These pain centers provide close support to the patient where many treatments are offered and personalized. The objective of these centers is clear: to improve the daily quality of life of patients suffering from chronic pain.
Without counting, of course, the many books which are published each year on the disease (The great book of fibromyalgia by Marie Borrel) as well as the sites and applications dedicated with active communities (Manage My Pain: application with the objective of help the able-bodied to better understand the feelings of people with chronic pain on a daily basis).
Scientific research on all fronts
You should know that fibromyalgia is not yet fully understood, however many hypotheses are emerging. Indeed, scientific research in recent years shows us that fibromyalgia is a disease of the pain detection system. Finally, a patient’s brain would respond in an exacerbated manner to non-painful stimuli.
While the road may be long, forgiveness is not impossible. Faced with the ineffectiveness of drugs, some researchers are focusing their work on a treatment path combining adapted physical activity and psychotherapeutic treatments. In addition, good social support would seem necessary to claim to be cured of this disease.
Find the list of all neurologists, specialists in immune deficiencies and fibromyalgia in your city or neighborhood on www.conseil-national.medecin.fr .
Since 2010, a simple questionnaire has generally been used to facilitate screening for fibromyalgia . This FIRST self-questionnaire (Fibromyalgia Rapid Screening Tool) consists of 6 questions. The positivity to at least 5 of these questions is a sign of fibromyalgia in patients suffering from diffuse joint, muscle or tendon pain, for more than 3 months, with a sensitivity and specificity close to 90: