Sophie has suffered from fibromyalgia for ten years. Pain, daily life, medical wandering… She bears witness to her journey.
- Fibromyalgia is recognized as a “disease” by the World Health Organization. It causes many disorders such as severe muscle and joint pain, great fatigue, weakness, sleep disturbances or difficulty concentrating.
- Yet in France, it is only recognized as a “chronic pain syndrome”.
- No curative treatment exists to combat fibromyalgia. In addition, no well-established support exists in France to help patients.
“The first symptoms appeared in May 2011, when I was 42 years old. It was fatigue, migraines, diffuse pain throughout the body (abdominal pain, gastric pain, etc.), insomnia, dizziness and nausea”, recalls Sophie. “I consulted the doctor for the first time who wanted to put me on sick leave, but as I was a nurse in a college and it was almost the end of the school year, I preferred to hold on for the last two months. .“Taking spasfon, doliprane and mopral then became the daily lot of this mother.
“The doctor had also advised me to rest as much as possible, but since I didn’t sleep much at night, it was complicated. He thought then that I was overworked because of the very rhythmic daily life with work and children.”
“I felt like my body had disconnected”
The holidays are coming, restoring hope to Sophie: “JI was very tired but I thought my condition would improve.“Finally, it’s the cold shower. Not only is his condition not improving, but it is deteriorating even more.
“I felt unwell when I got back from vacation. The firefighters took me to the hospital because my oxygen saturation was too low. Routine exams found nothing, so after three hours on oxygen, the doctors let me out, advising me to see a psychiatrist. They also thought I was overworked, even burnt out.”
After this discomfort, the symptoms worsen. “I felt like my body had disconnected.” Sophie is then unable to put a foot on the ground. “Jfelt like I was constantly hungover. I was very weak with pain all over my body. It was dreadful.”
The school nurse is unfit to resume her duties at the start of the school year in September. “I went to see the doctor every 15 days, sometimes even every week, to find out what I had because I couldn’t take it anymore, both physically and psychologically. But for him it was a burn-out with a depressive background. And indeed, at that time I was very depressed because I couldn’t do anything with my days. I had gone from an active life where I led everything head-on to a weakened life with pain everywhere, trouble concentrating and intense fatigue. So he gave me in turn anxiolytics, antidepressants and sleeping pills.”
For several months, Sophie follows the treatments but nothing helps. A consultation with the psychiatrist does not help him either. “The psychiatrist even wanted to give me treatment for bipolarity which made me even worse than I was!”.
Fibromyalgia: “All the doctors told me it was in my head”
After two years of ordeal, Sophie begins research on the internet. “I typed all my symptoms and came across fibromyalgia, a disease I didn’t know about. The doctor immediately told me that was not it… But after six months of battles, I finally got a medical certificate to go see a neurologist.”
The mother of the family makes an appointment with a specialist. “He asked me many questions, examined me (I hadn’t said anything about the disease so as not to influence him) and he told me very quickly that I suffered from fibromyalgia. And there was relief because finally, he put into words what I had had for 3 years while all the other doctors told me it was in my head. For him everything was clear and coherent so it relieved me enormously even if the announcement of the disease is not necessarily pleasant.”
“I decided to stop the antidepressants because I felt much better”
After this meeting, Sophie sees another neurologist who confirms the first diagnosis. “She also spotted a problem with the inner ear, hence the feeling of nausea and dizziness. She manipulated me and I left her office without these troubles, it was magic! In 5 minutes she put me back on my feet when I had been suffering for 3 years.”
“Obviously it didn’t improve everything but it allowed me to find a life a little more ‘normal’. I then decided to stop the antidepressants because I felt much better. In a few months, my general condition improved significantly.”
To continue to relieve her symptoms, Sophie decided to develop her knowledge of nutrition and naturopathy. “I have irritable bowel syndrome, it’s one of the symptoms of fibromyalgia. At the time, I had monstrous diarrhea which could happen at any time. I quickly realized that it was linked to certain foods that I ate, which could also cause other disorders (nausea, dizziness, migraines, etc.). So I listed the foods with their undesirable effects in order to eliminate them. This allowed me to stop mopral, spasfon and doliprane. I also took a cure of probiotics which did me a lot of good.”
The disease has also affected Sophie emotionally and psychologically. “I learned to let go, to delegate to reduce my mental load which also induces pain. I also realized that the body had limits and that it was necessary to listen to them, even if it meant putting off certain things until the next day! It took a long time for me to accept all this, that sometimes my body no longer follows.”
