Suffering from fibromyalgia since adolescence, I rub shoulders with my pathology like an old friend … Because of this “disease of evil everywhere”, I suffer permanently: I constantly have the impression that I am being beaten by knife in my thighs, clamp my feet in a vise and my back is burned. Although fluctuating, the pains are still there.
I often say that I have “a very small life”. I can’t walk for long because it makes my pain worse. I can’t take the metro frequently, let alone go to a restaurant, because the noise is terribly tiring for us with fibromyalgia. I have very few friends, because the disease has taken its toll in my social circles. My life at 68 is that of a 90 year old lady, isolated and sick.
Yet I have never been angry. Despite the pain, despite the headaches, despite the fatigue (these are the 3 main symptoms of fibromyalgia), I remain happy and optimistic. I have “laughter disease”: I am still a little girl in my head! I try to take it all lightly.
“Despite the illness, I remain happy and optimistic”
My fibromyalgia, I kick it all the time: I don’t let it take the first place on stage. To fight against cognitive disorders (linked to the pathology), I always try to do several things at the same time – I watch TV when I am on the computer, for example. And I go out as often as possible to do my muscles good!
The problem with fibromyalgia is that the impact of the disease on a daily basis goes unrecognized. Many patients do not feel “legitimate”: they are not really sure that they are sick, they do not dare to assert this state of chronic pain. When I meet a doctor for the first time, I am always apprehensive when I say “I have fibromyalgia”: will he believe me? Will he take my illness seriously? I had to wait 30 years to be finally diagnosed in 1998: for people with fibromyalgia, medical wandering can last for decades …
“Appropriate physical activity is essential for people with fibromyalgia”
When the authorities declared confinement, I remember saying to myself “phew, finally some rest!” But I quickly became disillusioned: for fibromyalgia sufferers, inaction is poisonous. I spent the first 15 days of confinement in bed, overcome by fatigue and pain: I slept between 12 and 14 hours a day.
I suffered from headaches, fatigue and diffuse pain: I thought I had caught the coronavirus and I refused to go to the doctor, for fear of infecting someone … Because the symptoms of our illness (sometimes) make you think of a nasty flu.
Then I decided to bounce back. On the advice of my doctor, I had a small exercise bike delivered to resume gentle physical activity – it is essential when suffering from fibromyalgia because it keeps the pain at bay. I pedal 2 hours every evening (smoothly!) … and I’ll walk in the sun (with my mask!) Whenever I get the chance. No way to let down: fibromyalgia will not have me, and I will continue to laugh at it with my friends, for as long as possible!
Thanks to Carole Robert, president of the association Fibromyalgia France.
Read also :
Fibromyalgia: Tai Chi to fight against pain
Fibromyalgia: 3 proven breathing exercises
A blood test to diagnose fibromyalgia
