"No one really knows anything about fibromyalgia, what it is or if it’s even a real disease."
8 Nov 2019 • 3 comments
Staring down fibromyalgia, Carenity Italy member Rosaline was tired of fighting alone! She tells us about her daily battle to lead a normal life she can enjoy with her husband.
Hello Rosaline, could you tell us a little about yourself?
My name’s Rosaline, I’m a young retiree, 62 years old, and I’ve been living with fibromyalgia for four years. My husband, who’s also retired, and I continue to lead a very active life.
How did you hear about Carenity?
I found your site thanks to Google. I was looking for a forum where I could talk about this illness which all too often is shrouded in silence.
How would you describe your illness?
No one really knows anything about fibromyalgia, what it is or if it’s even a real disease.
What keeps bringing you back to the forum every day?
Thanks to you, I don’t feel alone anymore and when I was feeling like things were really bad, I discovered people who were having a rougher time of it than I was or others who were in good spirits.
How did your family and friends react when you were diagnosed?
My friends and family kept telling me to go see my GP, it’s only now that they really understand and they’ve studied the illness a bit. But still, it’s sometimes difficult to get them to understand that I can’t do certain things, without them making me feel guilty about it. Ignorance reigns supreme when it comes to fibromyalgia and the arrogance of a lot of medical professionals, who even though they don’t understand anything, like to pretend like it isn’t a serious or real illness, makes everything that much harder.
How does fibromyalgia impact your daily life?
It’s a constant, daily struggle against my own body and sometimes I ask myself if I’m going to make it. It’s a fight between what I want to do and what I can do and sometimes depression decides to rear its ugly head...
What sort of treatment are you taking now?
Presently, I’m receiving treatment for ostheo-articular pathologies. The last rheumatologist I saw sent me off with orders to take a couple of aspirins and that was it.
What’s the hardest thing to live with?
Not sinking into nostalgia, thinking of how I used to be. I always have a thousand things I want to do, but I feel lucky if I manage to follow through on even one of them.
What advice would you give to someone trying to get a correct diagnosis?
I don’t really have advice for someone waiting for a correct diagnosis. I only hope that person finds a conscientious and knowledgeable physician.
Anything you’d like to add?
Thank you Carenity, there were so many times where I felt discouraged or even desperate, but I was able to regain my strength by reading the different discussions on the platform. I realised there were a lot of us out there and I hope one day, soon, they’ll find a cure for this.
A big thank you to Rosaline for sharing her experiences! What about you, how have you adapted your lifestyle around fibromyalgia? Share your experience with the other members by leaving a comment below.