From Dismissal to Diagnosed.
My Fibromyalgia Journey: From Dismissal to Diagnosis
It all started with a simple migraine and vision loss at the age of 16. At first, I didn’t think much of it, but as the symptoms persisted, I knew something wasn’t right. I went from doctor to doctor, searching for answers, only to be dismissed time and time again. My CRP levels (a marker of inflammation) were constantly high, yet the advice remained the same—“Go on a diet, exercise more.”
The irony? I was already doing everything right. I exercised twice a day, ate healthily, and pushed myself beyond limits, yet my body refused to co-operate. I was labeled a “difficult puzzle” by male doctors who couldn’t seem to figure me out. Eventually, my GP decided to dig deeper, sending me for CT and MRI scans. That’s when they found two 5mm cysts in my brain. Suddenly, the relentless migraines, nosebleeds, and constant exhaustion made sense.
Despite getting a full night’s sleep, I always woke up drained, as if I hadn’t slept at all. Things only got worse. The medications they put me on caused me to gain 50kg in less than a year, yet I was still made to feel like I wasn’t trying hard enough. My twenties became a blur of disappointment and frustration. A neurologist even told me to put my studies on hold because I could no longer retain information. I felt like a failure. I was so close to finishing my education, and just like that, my whole world turned upside down.
But my story didn’t end there.
Now, at 30, I can look back and see just how far I’ve come. The turning point? Finding the right doctors—women who understood my body in ways no one else had. It didn’t take them years to figure me out. Within months, they ran all the necessary tests and pieced together what was happening. Yes, hospital stays became a recurring nightmare, but those stays led to real answers.
At one point, I was even tested for porphyria, another rare disease. The first test came back positive, sending me down yet another path of uncertainty. After enduring severe pain, countless IV drips, and endless waiting, the second test came back negative. It felt like a cruel joke. Maybe I was a vampire in my past life—after all, the sun is too loud (if you know, you know).
My life and lifestyle have completely changed. Adjusting hasn’t been easy, and some days, it still feels impossible. But thanks to my incredible team—my psychologist, who continues to guide me, my psychiatrist, who found the right treatment, and my rheumatologist, who went out of her way to get me the help I needed—I am not alone in this fight.
There may not be a cure, but I refuse to let fibromyalgia steal my life. Sitting in a corner and letting time pass me by would be far worse than the pain I endure daily. No, this is not the future I imagined for myself, and I may never feel like I’m “living my best life.” But I will take this journey with both hands because I am a warrior.
Fibromyalgia may be a part of me, but it does not define me.
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