The pain is persistent and often strong. They are accompanied by associated disorders such as intense fatigue, sleep problems or other pathologies, such as depression. A chronic condition, fibromyalgia complicates the lives of 1.5 to 2% of the French population according to Health Insurance. On the occasion of the World Day of May 12, five women talk regarding this little-known disease.
I want to show that despite the disease, many things are possible. »
Floriane Vintras, 33, has incomplete paraplegia due to a malformation of the spinal cord. As a teenager, she had to give up her crutches for a wheelchair, because she felt more and more pain. Verdict: polyarthritis. Then, at 27, a new diagnosis: she suffers from fibromyalgia. Permanent and intense pain accompanies it. The followingmath of her delivery last October was particularly difficult.
But she manages to work part-time (3/5), as head of digital communication for the social protection group Apicil. At the same time, she has an Instagram account followed by nearly 50,000 subscribers. “A second job, she laughs. I want to show that despite the disease, many things are possible.» And share her tips as well as the useful products she has found, especially those she is testing with her 6-month-old daughter, to help new mothers.
The causes of the onset of the disease remain poorly defined and appear to be specific to each individual. For Marie Faujanet, 56, diagnosed at 23, it started following“a triple emotional shock”. A miscarriage two years earlier, the death of her father three months earlier, and the triggering event itself, a car accident with whiplash. “At the time, this disease was not recognized at all. »
Recurrent medical wandering
However, 1.5 to 2% of French people, and especially French women, live with fibromyalgia. An invisible disease still poorly known, often diagnosed following several years of medical wandering. “I live with a kind of generalized contracture”, testifies Larissa(1)52, diagnosed in 2017.
Fibromyalgia is, in fact, an alteration in the perception of pain. Its neuroreceptors in the central nervous system are disrupted. Thus, being touched or simply touching clothing can be painful. And some pain – benign in healthy people – is amplified in those living with fibromyalgia syndrome.
The company, although large, where I worked did not offer me any suitable position. »
Christine(2)52, was fired for incapacity in 2007, aged 36, three years following her diagnosis. “It was extremely violent. The company, however large, where I worked did not offer me any suitable position”, she remembers. She now performs occasional proofreading and corrections for a publisher and is involved in the cultural associative fabric of Sarthe, where she lives.
Like causes, consequences vary from person to person. Very often, professional life is particularly affected. Part-time work is necessary, sometimes compensated by invalidity pensions. Mélanie Howald, 43, diagnosed since 2016, also testifies. She thus went to 32 hours a week of work but also had to accept a job below her qualification to avoid too much travel.
Possible positive developments
No dedicated treatment is available on the market. In terms of medication, patients use analgesics, sometimes anxiolytics and antidepressants. At the same time, they have developed tricks. Marie, Christelle, Larissa… All have adapted their diet (often eliminating dairy products, or reducing animal protein intake). Physiotherapy, acupuncture, osteopathy… are among the disciplines they use.
Finally, a majority of them invite you to say things rather than keep them to yourself. Like Marie who, every day in her kitchen, writes down her pain threshold for those close to her, as if to inform them without it invading their daily lives too much. So many solutions which, for some, manage to reduce the symptoms. So Christelle believes she has gained a lot in comfort of life, also thanks to a new family situation: a separation followed by a new meeting.
(1) Did not wish to disclose his surname. (2) The first name has been changed.
