Fibromyalgia is a complex syndrome that often leaves doctors confused. Non-drug methods offer an effective alternative.
- Fibromyalgia affects 2 to 3 million French people, 80% of whom are women.
- The syndrome has been recognized by the World Health Organization (WHO) since 1992.
- 30 to 50% of fibromyalgia sufferers have already had depression. 90% suffer from sleep disorders.
“My fibromyalgia started around 15 years old. I didn’t dare to complain too much, because at the time we didn’t talk about it, but I was extremely tired. The pains were blamed on the growth. They have evolved over time, in a sneaky way. They settled permanently after my pregnancies. »Carole Robert, President of Fibromyalgia France, went without diagnosis for a long time and therefore without appropriate care.
Even though it has been recognized by the World Health Organization (WHO) since 1992, fibromyalgia is only defined like a “syndrome” by the National Academy of Medicine. Added to this is the stereotype of pain that is “only in the head” and against which patients and associations fight. On the occasion of World Fibromyalgia Day, Why actor looks back on the patient journey.
Multiple symptoms
Fibromyalgia affects 2 to 3 million French people. But it takes on a certain amount of mystery. So much so that what is now called a syndrome has long left doctors perplexed. “The assessment, whether radiological or blood, is normal. Someone who suffers from isolated fibromyalgia has no other health problems, in a way, recognizes Dr Patrick Sichère, rheumatologist in Paris. The pains are localized at recognized points, which serve as support for the diagnosis of fibromyalgia syndrome. Most often, it is persistent pain that characterizes a patient. But many symptoms appear, some of which suggest other pathologies, which further complicates the diagnosis. It is moreover this difficulty in defining the physical and psychological ill-being of patients that pushes many doctors to refuse any treatment.
Dr Patrick Ginies, anesthesiologist specializing in pain at the Montpellier University Hospital: ” A part of the doctors say they are not competent, others try too alternative doctors. The third see too much psychic suffering, while there must be a balance between these three areas. “
Dysfunction of the pain response
“To summarize fibromyalgia as a psychological problem is a mistake. It is due to a dysfunction of the pain centers in the brain and spinal cord. We can compare it to heart failure: in an insufficient, the heart is not efficient, illustrates Dr Patrick Sichère, rheumatologist in Paris. In the case of pain function, it is a dysfunction in the efficiency of the pain response. “
“I sectioned off my symptoms”
Fibromyalgia is so complex that it is difficult for patients themselves to discuss symptoms with their doctor. “I had difficulty making myself understood, remembers Carole Robert. I did not know how to express all my troubles. I divided my symptoms according to the doctor I saw. To the rheumatologist I was talking about my legs, to the cardiologist about my arrhythmia. It was complicated to make the connection between my symptoms. »A communication problem that is often reflected in the care, incomplete or inadequate.
Carole robert, president of Fibromyalgie France: “ I have often come up against the incomprehension of the medical profession. The diagnosis made, in 1998, I had a lot of trouble getting treatment adapted to the pain. “
Hypnosis, relaxation, sport
The difficult dialogue between doctors and patients is a major focus of work. The objective is to personalize the care as much as possible, which requires clear dialogue but also patient education. “In chronic pathologies, active intervention by the patient is required. He must understand the complexity he carries almost as well as the doctor, explains Dr Patrick Ginies. Once he understands this, he can better ask for help. If he does not understand it, it will be hijacked. “
Dr Patrick Ginies : ” We see people operated on several times for the carpal tunnel, the shoulder, with failures, because we did not take into account the whole patient. “
This is how some patients find themselves on analgesics, sometimes opiates. At the Montpellier University Hospital, patients must regularly be weaned from morphine derivatives. Other patients are placed on antidepressants, which act on the central nervous system. However, non-drug approaches are often the ones that provide the most relief.
Dr Patrick Sichère, rheumatologist in Paris: ” What is important is the non-pharmacological treatments such as hypnosis, relaxation, physical activity which is fundamental to restore confidence in your body.. “
It is precisely the alternative approaches that made Carole Robert feel better. “For a year and a half, I only got out of bed for an hour a day. Seven years ago, I discovered relaxation, gentle walking and dancing workshops. I started to get back into the movement, she says. I asked the medical profession to reduce my treatments. I have learned to deal with pain and stress by these techniques which take the mind off it. It helped me to regain my confidence, and to get my body out of this rust that I had been in for a long time. “
Patients with a specific character
“Fibromyalgia is often accompanied by connections with psychiatric illnesses”, admits Dr Olivier Dubois, psychiatrist in Saujon. It is estimated that 30 to 50% of people with fibromyalgia have a history of depression. The vast majority of them also suffer from sleep disorders.
If the syndrome has psychological manifestations, it is actually “psychosomatic”, meaning that the mind and body interact. It even has repercussions on the character of the sick: “There is always a fighting side, hyperactive, easily guilty. People with fibromyalgia are in a kind of quest to do the maximum, as if there was a judgment on their state of mind, details Dr. Dubois. There is also this anxious background, with an intolerance to uncertainty which means that these people are often in a hyperactivity which protects them from their anxiety. Their body eventually becomes exhausted, signs of suffering appear. “
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