"Faced with fibromyalgia, relatives should be understanding and not judgmental."
Sep 5, 2019
Manuela, 45, lives with her partner and has no children. Her daily life has been disrupted by fibromyalgia, which she has been suffering from for more than ten years. She shares her experience with her family’s reactions to her diagnosis and the long journey she has been through with fibromyalgia.
Hi Manuela. How did you find out that you had fibromyalgia?
In 2008, I began to suffer at times where I would experience great fatigue and pain throughout my body. My doctor diagnosed me with fibromyalgia a year after I initially began to feel symptoms. He sent me to the pain center in Marseille to confirm the diagnosis.
How did you feel when you were diagnosed?
I felt lost because I had never heard of the disease before. My husband (at the time, I was married) did not accept that I had fibromyalgia… it frightened him. My friends distanced themselves from me because, suddenly, I was no longer the active person they once knew. What hurt me the most were the comments from others telling me that everything was in my head and that I would get over it.
How about your family? Were they supportive?
Actually, my family, my new friends, and my new partner are all supportive and listen to me express my pain and suffering. My doctors are also listening to me.
How has fibromyalgia changed your daily life?
I haven't worked since 2010. My outings are no longer the same. I no longer go to the cinema and I avoid long car trips and plane trips. I engage in more “sport activities” in addition to my physical therapy sessions. I have retired from social life.
What does your treatment regimen look like?
I am currently taking Levocarnitine and Tramadol. They are not really effective. I'm waiting for a ketamine treatment. I supplement these medications with homeopathy, treatments, hypnosis, sophrology, and consultations with a psychologist.
What advice would you give to others with fibromyalgia and their families?
It is important that individuals with fibromyalgia have a good circle around them and have close, people who will listen. Also I would encourage individuals to resource pain clinics; they can be very useful; avoid shutting down/closing oneself off; explore all the treatment possibilities; and, above all else, explore different possibilities of expressing oneself: being able to speak of your feelings, your emotions, your health....
For loved ones of those with fibromyalgia, it is necessary for them to be understanding and not judgemental. They should help make the daily life easier of their loved and help them forget, for a moment, the condition.
Many thanks to Manuela for sharing her story!
How about you... In your case, how did you feel when you were diagnosed with fibromyalgia? Were your loved ones supportive or did they distance themselves?