understand everything about illness with Céline de la Fontaine

understand everything about illness with Céline de la Fontaine
understand everything about illness with Céline de la Fontaine

OPeople don’t die from fibromyalgia. This is perhaps one of the reasons why patients are very lacking in consideration. In France, between 1.5 and 3 million people are affected by this disease. “ It’s called the disease with 100 symptoms. : chronic pain, cognitive disorders, sleep disorders, joint pain, muscle pain, etc. », Explains Céline de la Fontaine, president of Fibromyalgie Aube, herself affected by this disease.

“We don’t die from fibromyalgia but we don’t live”

Suffering present day and night. Tirelessly. This disease is recognized by the WHO but not by Social Security. This lack of recognition and consideration does not allow patients to benefit from financial or household assistance, etc. Céline de la Fontaine worked in the field of press and radio. “ When I came home from work, I couldn’t even move, sometimes I couldn’t climb the stairs to go to bed », Confides the president of Fibromyalgie Aube. “ It’s a vicious circle, the disease evolves with overuse “.

“I no longer make To do lists, I make sweet lists”

The years when I was really at the height of my fibromyalgia attacks, I no longer left the house. I could no longer take my children for walks. It’s all life that stops “.

A difficult diagnosis to make

Céline de la Fontaine was diagnosed at the age of 45 but the causes of the disease are currently unknown. There is not enough research to identify causes and effects. The difficulty of diagnosis can be explained in different ways, “ there is no biological marker that can reveal a diagnosis. Blood tests and x-rays reveal nothing “. “ Unfortunately, there is a lot of medical error and this works against the management of the disease. “.

I am lucky to have a general practitioner who diagnosed me and asked the right questions. » Since then, Céline de la Fontaine has gone to the pain center in Reims to see a specialist. “ It’s a little-known disease but we don’t consider it, we just ask that we recognize that it’s not a joke. It’s not in the head! », insists Céline.

“If it was a lie, I would not have lost my job, I would not have ruined my children’s childhood, I would not have ruined my married life”

Treatments and gentle solutions

Some patients are ashamed because we are not considered, we sometimes come across as malingerers. If it was a lie, I would not have lost my job, I would not have ruined my children’s childhood, I would not have ruined my married life, I would not have created this association “. Unfortunately no effective treatment exists for this disease. “ I have no treatment that I can take during the day, I react badly to all the medications taken. When I go to bed I throw myself on codeine to make sure I get a few hours of sleep. “.

Gentle and complementary techniques are also used in patients with fibromyalgia, at their own expense. “ We find everything we can to survive, micronutrition, naturopathy, essential oils, reflexology, hypnosis, acupressure mats… “. The objective of drug treatments or alternative medicine is to send a message to the brain, which in return will send endorphins.

Morale of steel

Humble, Céline de la Fontaine does not complain, she does not wish to draw attention to herself. During nearly two hours of the interview, only a few sentences about his state of health came out of his mouth. She prefers to concentrate on the other patients. “ I can’t let all these people suffer without doing anything, knowing that I feel it “. That’s the whole idea of ​​his association.

“I am not fighting against illness but I am fighting against those who do not want to understand”

In the morning, I force myself to get up, take a shower and get dressed, it’s good for my morale », Explains the president of Fibromyalgie Aube. “ I keep a dignified life as much as possible, because I have a lot of self-esteem maybe, I don’t know… “.

On this World Fibromyalgia Day, the Aube association has managed to bring together around sixty French town halls who will either wear blue or broadcast a visual. Keep your eyes peeled.

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