Hello Emily, thank you for agreeing to answer our questions. How long was the diagnosis process until you finally obtained a diagnosis?
I waited a year and a half before I was diagnosed, after the pain first began in May 2016. I was not the victim of a misdiagnosis. The rheumatologist I had seen before consulting the doctor who diagnosed me with fibromyalgia told me that it could be either Ehlers Danlos disease, fibromyalgia or depression.
Had you ever heard of this disease before?
No, I had never heard of it before, at least not before my first research on the subject. I did this research because my blood tests showed nothing at all. The same goes for the brain MRI I had to do at the end of July 2016 because of suspected multiple sclerosis.
How did you feel when you were diagnosed? Relieved to have found the cause of your pain or frightened by the disease?
I was relieved when I was diagnosed. Relieved to be able to tell myself that I wasn't crazy, that my symptoms were due to a real illness.
Who made the diagnosis? How did the health professional inform you?
A resident doctor finally made the diagnosis. He told me normally, without going through any detours. He said, "Look no further, you have fibromyalgia". He gave me a little file that explained what fibromyalgia was.
How did your loved ones react? Do you feel that you have been sufficiently supported?
My parents supported me about the pain, but couldn't get their minds around the fact that I was really sick, until the day my mother accompanied me to the pain relief center at Cochin Hospital in Paris and the specialist clearly explained that fibromyalgia is a real disease.
What is the hardest part of learning that you have fibromyalgia?
For me, the hardest part is knowing that there are no treatments that cure or could relieve us [from the symptoms] over a long period of time. I am disappointed that research has yet to discover any treatment or understanding of the cause... This would allow all patients and others to really know the origins of fibromyalgia and on the other hand that there may be one or more effective treatments to better relieve us, such as spondylitis, for example, or even cure us.
The hardest part is also reading or hearing false facts about fibromyalgia, people who allow themselves to give false definitions of fibromyalgia. These people do not help us at all so that we can be more credible with administrations, doctors, or other categories of outsiders. It is also hard for a person who does not have a pathology because our disease cannot be seen except for example when I have to use my cane for long walks or when I start limping for example.
What are your methods for accepting this disease?
What allows me to accept the disease is above all my CBT therapy with my psychologist. The psychologist offered me a schedule of activities related to my pain that I have to complete every day. I need to record my daily activities with the level of pain out of 10 and note what I felt emotionally and pain during the activities, so that I can average at the end [of the week] and see if I can better manage my pain over time. She also advised me to read personal development books.
She helped me set goals for myself in my daily life and has especially helped me with being able to entirely accept fibromyalgia as a part of my daily life. Now I no longer treat my condition as an enemy thanks to her advice and my personal diligence to make it happen. I now involve my condition of fibromyalgia in everything I do. When I manage to do something that fibromyalgia allows me to do, I congratulate myself for my efforts and when it tells me "stop" I listen to to my body and no longer go against what my body can no longer manage. It is only by accepting this cohabitation with our illness that we will be able to improve morally and physically.
Have you seen any changes in your condition as a result of your diligence to accept it and improve yourself?
Accepting a disease is the starting point for moving forward in the future. Acceptance is always better than being in denial. Denial kills a person slowly. The loss of our former "self" from the disease usually leads to a sense of sadness or grief, which is a normal human reaction. A phase of revolt and misunderstanding often follows the diagnosis. This reaction is completely normal, the psychological impact of the announcement, which constitutes a life changing act, requires the patient to do a "mourning work" of their former state, before they can accept themselves as they are now and adapt their life or rebuild it if necessary.
Here are the steps in mourning:
The stages of bereavement work were described by psychiatrist and psychologist Elizabeth Kübler Ross in 1976:
Initial shock: "On the spot, it was a shock! »
Denial: "That's not true! »
Rebellion: "Why me?"
Negotiation: "Okay, I don't have a choice, but..."
Reflection: "I will never be the same again! »
Acceptance: the disease is accepted (or "supported")
Not all of these steps are required or experienced by all patients.
For my part, I went through the stages of revolt, negotiation, reflection and acceptance. I have indeed seen changes in the way I manage my pain, complaints and morale. Even with severe pain, I try not to let it get to me... well, of course, there are days when I crack, when it's not easy to manage the pain but I try to do everything to get the maximum relief and keep my spirits up.
How would you describe your morale at this time, one year after diagnosis?
My morale is fine right now. There are days when I can be sad, angry or wish I could do more things but overall I am much better than at the beginning of the diagnosis at that level. I am much better at managing my emotions [and feelings] now.
What treatments are you on or take part in?
I take tramadol prolonged release capsule twice a day but I can go up to 3 depending on what it says on my prescription. I only take tramadol when the pain becomes unbearable, although at my last visit the doctor told me to take it before the pain gets too severe.
In parallel to this treatment, I started physical therapy and balneotherapy (bathing in usually warm and mineral rich waters to treat health ailments) sessions. I stopped physical therapy because I was not seeing any benefit, rather I was experiencing even more pain at the end of my sessions. I also walk when I can (once a week) between 30 min and 1 hour maximum with breaks. When I don't have time, I ride for 30 minutes on an exercise bike, 3 times for 10 minutes. I go to my balneotherapy sessions once a week. I have a TENS Unit (transcutaneous electrical neurostimulation) but for the moment I don't really see the benefits of this little machine. It doesn't work on my major pains and on the lighter ones, as soon as I take it off, the pain comes back stronger. I also have a massage mat and a hot water bottle.
Do you have any advice for a newly diagnosed patient?
I would tell them not to hesitate to try certain prescribed medications and natural techniques. I would especially advise them to find and to continue to follow-up with a good psychologist - particulary one that practices cognitive-behavior therapy. It is a real moral help. After mourning their condition, I would tell them to always keep hope, to be as positive as possible on a daily basis. Of course this will not be the case every day but at least try to be in high spirts and positive as often as possible.
Anything else you would like to add?
Do not stay in isolation. If you don’t have family, loved ones, or close friends that do not believe you are really sick, then find and get involved with a near-by patient support group.
Even if nothing cures fibromyalgia at the moment, we can find some things that allow us to have a some relief, even if it is for a moment or a few hours or longer. Always keep your hopes up, fight for your families or for something you really care about!
Don't give up on life, even if everyday life is often not very nice to live. Try to do things that give you an overall sense of well-being and things that will relieve your pain, such as relaxation, water therapy, or just a walk in the countryside with a friend or family member. Do not remain inactive as your pain will get worse as you go along. Get out of the house even if for 20 minutes to get some fresh air and activate your muscles.
Wishing you courage and strength to all in our daily struggle!
Many thanks to Emilie for giving us her advice on how to accept a disease, in her case fibromyalgia, and how to regain peace and enjoyment after diagnosis.
Feel free to comment on her testimonial to ask questions, discuss with other members, and share your experience!