It took five long years of seeing many doctors, with a million different diagnoses and tests, to finally have a diagnosis of fibromyalgia. The mental anguish I went through was astounding and very draining. Most doctors ignored my symptoms and treated me like I was exaggerating or making them up. “Just take a Tylenol.” “Exercise more.” “Get some rest.” “There is nothing I can do for you,” etc.
In June 2016, I had horrible pain in my neck, arms and shoulders. I called my primary and he said, “Take a Tylenol.” I told him this pain was worse than before. Needless to say, the Tylenol did nothing. I called back and was told the only available appointment was in three weeks.
A week later, the pain was worse and I started to have trouble walking. My muscles felt like they were being pulled and tight. I could only take baby steps and I felt so weak, completely exhausted – like the wind had been knocked out of me. I went to the ER. They panicked and assumed it was a stroke. I said it was on both sides, but no one listened.
After a slew of tests for the heart, brain, back, blood, etc., everything was normal. They kept me overnight for observation. I tried walking around the corridor of my floor, but it was so painful and difficult. I just laid there, terrified of what could be wrong with me. What if I got worse?Why were there no answers? I felt trapped within my own body.
The next morning, after a night of tossing and turning and barely getting any sleep, my primary said, “It’s probably peripheral neuropathy.” Probably? “I am going to prescribe Lyrica in high doses and see if that helps.”
I followed up with a neurologist who also ran a battery of his own tests: EMG, physical (head to toe), etc. He ordered a brain MRI, because he suspected multiple sclerosis and wanted to rule it out. More terror, fear and rampant thoughts. I could not sleep or eat. The fear was consuming me.
Two weeks later, I went back to see the neurologist and he said it was not MS, but fibromyalgia. I had never heard of it, but I remember sighing a huge sigh of relief that there was finally a diagnosis and hopefully a treatment plan. The doctor did not know a lot about fibromyalgia, except to say the best thing for it was exercise. I thought to myself, how does one exercise feeling like this?
I started seeing a rheumatologist and he was pretty much the same – “There is not much I can do except send you for physical therapy and prescribe Neurontin because the Lyrica made you sick.”
We go through so much mental anguish, fear, uncertainty, etc. just living with this day to day, and the medical community seems to be so uninformed. I myself had never heard of fibromyalgia. “There is nothing I can do” is the most common response.
I advocate for the millions of us who struggle with the disease. I am now a committee member of the Fibromyalgia Care Society of America and we are holding a walk on June 3rd at Branch Brook Park in Newark, NJ.
FCSA is currently working with leading medical colleges and
teaching hospitals throughout the country to develop the standards of care model and offer elite multidisciplinary care to those living with fibromyalgia. We also have a virtual page for folks who would like to contribute to help us obtain a Center of Excellence for the care and treatment of fibromyalgia.
Inform yourselves, research, read books, don’t be afraid to ask questions. Reach out to the millions who have fibromyalgia. You are not alone.
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