Severe fatigue, pain throughout the body, sleep disorders… Fibromyalgia is a disease that is still unknown and underdiagnosed. In Ploërmel (Morbihan), Valérie Thomas, 55, recounts her journey of suffering.
It all started in 2014 after surgery on a fibroid. I started to swell, to have impossible pain, although I had no health problems before. We didn’t understand what I was doing. I went back to the OR, urgently. And rebelote, a third time. I was in a lot of pain, I had trouble walking, I thought it was the pain due to the operation, in fact it was fibromyalgia that was taking place. I had a hard time getting over it; I spent a year without working, almost lying down all day …
My GP sent me to see a rheumatologist in Rennes, who immediately spoke about fibromyalgia. I was very lucky in my misfortune because I was diagnosed very quickly. One year anyway, everything is relative … Often people hang around from doctor to doctor, without knowing what they have.
A painful daily life
Pain in different places, sleep disorders, great fatigue, concentration or memorization problems, headaches, intestinal disorders… It is quite diverse depending on the person, but I have known all that . And I have put in place different things that allow me to compensate. More or less well, depending on the day. Some days are excruciating, others manageable, but they are never painless.
The body says stop
I had a very active life, two children, a husband, businesses to manage by his side (supermarkets then ambulance taxis, editor’s note), a house to take care of, a dense community life … There is often this common point in people with fibromyalgia wanting to do everything right, put pressure on themselves, make lists, organize, think about everyone’s needs… and forget about themselves. Fibro is like the body saying stop at a certain point!
A mourning to do
When you are diagnosed, you expect treatment and there really isn’t. We’ll have to live with it. It’s like mourning, with denial, anger, depression, acceptance. You have to go through all these phases to put things in place and be able to get better.
We have to take care of ourselves, the doctor doesn’t have time. I went to find what to do on the Internet… Three months later, I was in spa treatment, in Dax, famous for that. This is the best thing I could do, because in addition to the morning treatments, I saved a lot of time on my illness and understanding what was happening to me, thanks to the discussion groups of the sophrologist l ‘afternoon.
I saw which ones were sinking from year to year, and which ones were getting better and better. I chose my side, the second, I took advantage of their experience. I also realized that the priority was first of all oneself, that it was necessary to listen to oneself, not to anticipate too much, to live the present moment, to let go. It is complicated. For yourself, and for your loved ones. It changes the priorities. It also changes the character.
Find your solution
I am being followed in a pain center and have been on antidepressant treatment since 2015. My wish is to stop it, at least to reduce it, because I don’t like the idea of swallowing drugs for life, but it is complicated. I tried a lot of things at the same time: tens , acupuncture, fakir mat, balneotherapy, physiotherapist, massage cushion, yoga, Nordic walking, magnetotherapy… Some work, others don’t.
His “little victory”
For two and a half years, I have been training in relaxation therapy. With the idea of sharing this knowledge and helping others. This disease, it almost became a chance even if it makes me suffer! It is a rebirth, a new life. I am building a different life for myself, I allow myself to say no, to live out my desires.
Inserm expertise and its recommendations
Between 1.4 and 2.2% of French people are said to have fibromyalgia, but the absence of a specific biological marker, just like the results – very variable – of the brain imaging studies carried out so far, make the diagnosis difficult to diagnose. to pose.
The management of these patients is also complex and often requires a multidisciplinary approach adapted to each one. Finally, investigations in young people suffering from diffuse chronic pain must be strengthened, as well as research on the origin and consequences of such pain occurring in childhood and adolescence.
These are some of the conclusions and recommendations of the Inserm expertise , requested by the Directorate General for Health and made public in October 2020. More than 2,000 scientific documents published over the past ten years have been reviewed by the fifteen experts.
A world day and a campaign
Spotlight on the disease, World Day of May 12 is coupled with an awareness campaign launched by the SFETD (French society for the study and treatment of pain), in connection with the association Fibromyalgia France . The film presents scenes from everyday life that are apparently harmless, but which are real ordeals for patients: “Fibromyalgia, we don’t know much about it, yet it hurts a lot” .
A questionnaire to screen yourself
Prof. Françoise Laroche is a rheumatologist at the Pain Assessment and Treatment Center at Saint-Antoine Hospital, in Paris. She responds to the diagnostic wandering, often singled out.
Why this wandering in a pioneer country for the management of pain?
Because the lesions at the origin of the symptoms cannot be objectified by routine examinations, such as a blood test or an X-ray, they confuse caregivers and patients … Fibromyalgia is, like functional intestinal disorders by example, a genuine disease of pain. It seems that the brain is not able to modulate the pain circuits.
While it is true that we have dedicated structures in France, there are so many people with fibromyalgia (1.6 million) that they are not enough. And family physicians, who are not trained in this disease (about which so little is known), may be in denial.
What criteria today for the diagnosis?
Those we have are currently referencing. They can evolve, refine, thanks to our discoveries. There is also a self -screening questionnaire in six questions, FIRST, (available on the site fibromyalgiesos.fr ), which can therefore be self-administered, if one suffers from diffuse chronic pain, muscle or joint. and / or tendons for more than three months.
Five positive responses are highly predictive of the risk of developing fibromyalgia (90% probability). Complementary examinations are often unnecessary… (Dr Brigitte BLOND)
Obviously heterogeneous solutions
Dr Caroline Maindet is a pain doctor at the Pain Assessment and Treatment Center at the CHU Grenoble. It evokes the treatments and drugs.
What treatment to provide?
The announcement of the diagnosis is already the beginning of the treatment, because it allows the patient to move forward, with the objective of making plans and not just of not having pain. Duly informed, he is encouraged to get back into motion : physical activity is at the heart of care, and this is not a paradox!
These painful, tired, deconditioned people must be retrained with the effort, on prescription. No sports club, but daily activities, to be supervised by a physiotherapist, a physical activity monitor, etc., so that they are adapted and supported. In addition, we recommend practices that link body and mind, yoga or tai chi. Thermal cures are also effective.
Are there specific drugs?
Medication may be resorted to to calm the pain and resolve an insomnia problem, but these non-specific “spare wheels” do not always provide the desired relief. Better to rely on non-drug approaches, especially as fibromyalgia presents itself very differently from one person to another. The solutions are therefore necessarily heterogeneous. We are far from having understood all the determinants of fibromyalgia and the avenues for specific treatments are currently uncertain.
(Dr Brigitte BLOND)