As told to Jacquelyne Froeber
I was lifting weights at the gym when I felt something rip in my neck. I wanted to scream, but the sudden burst of fiery pain took my breath away. “Don’t panic,” I told myself. It was probably just a neck strain or a pinched nerve.
I went home and put ice on it.
The fire continued to burn.
The year was 2000. We’d all survived Y2K. I was 26 years old and two finals away from surviving my first year of medical school.
I expected the pain in my neck to get better as finals week went on — but it got worse. I studied human anatomy with a ring of fire supporting my head. Then the flames started to spread down my back and continued moving south.
Somehow, I made it through finals, but there was no relief from the burning pain. It was officially time to panic.
What the hell was wrong with me?
I went to medical school in Boston so there were a lot of fancy healthcare providers and specialists to choose from. One by one, appointment after appointment, everyone said the same thing: “We don’t know what’s wrong with you.” There was nothing to see on my scans. No neck injury to speak of.
To add insult, some providers said I was imagining the pain. Others said depression was the problem. Everyone said I needed to exercise more.
I was already exercising — hence the gym injury — and I tried to do more. But fatigue had set in, and I was so tired all the time. I woke up exhausted as if I didn’t sleep at all during the night. I was also stiff and sore — like I’d run a marathon and then gotten hit by a truck on repeat.
I was running on fumes by the time school started again. I had just enough in me to study. I knew I couldn’t go into a hospital environment and work with patients when I felt so bad. So I took a medical leave of absence my third year — which was basically unheard of — but I knew I didn’t have a choice. I had to get better or give up on my dream of being a doctor.
By this time, I was desperate. I’d spent every penny I had on alternative medicine, specialists, acupuncture and herbs. Nothing helped.
Someone along the way suggested I see a chiropractor so I made a half-hearted appointment. During the exam, he pressed on a spot in my upper body and I almost fainted. “That’s so painful,” I cried out. He pressed on other areas with the same result. “I think you have fibromyalgia,” he said.
“Fibro-what?” I asked. I’d never heard that term before in medical school — or ever. It was the first time someone gave a name to the pain. It was the first time in years I had hope.
I practically sprinted to the bookstore and headed to the health section. I made my way to “F” and found one copy of “Fibromyalgia and Chronic Myofascial Pain: A Survival Manual.” I clutched the book in my hot little hands and spent the next 24 hours reading about fibromyalgia.
Everything in the book described me. I was nodding along with every line. The burning, the pain, the brain fog — it was all me. It was exciting — thrilling — to finally have some answers. It was devastating, however, when I learned that medical treatments were basically nonexistent at the time.
Back then, fibromyalgia was considered a “wastebasket diagnosis,” which meant that healthcare providers thought the symptoms were either fake or all in your head. And there wasn’t much doctors could offer as far as treatments.
Learning what the medical community thought of my condition lit a new — different — fire within me. I knew I had to get better enough so I could help other people find a better way to live.
Over the next few months, I used myself as a guinea pig and tracked the things that made me feel better. I was sensitive to dairy, so I changed my diet. I prioritized stress management and sleep hygiene.
A type of therapy called myofascial release was the pain changer for me. The technique involves stretching the tissues around the muscles that can be inflamed for people with fibromyalgia. After the first treatment, I felt a small amount of pain relief in my neck. I knew I was on to something big.
The combination of lifestyle changes and myofascial release therapy brought my pain down from a 7 to a 3. I felt good enough to go back to med school.
Even though I had an idea what the medical community thought about fibromyalgia, hearing it in person almost broke me. Early on in the school year, a teaching physician announced that fibromyalgia didn’t exist. Other colleagues said people with fibromyalgia were making it up to get disability benefits. The consensus was that people with fibromyalgia were lazy. Hopeless. A waste of “our” time.
I wanted to yell at the top of my lungs that no one had a clue what it was like to live with fibromyalgia. But I kept to myself. If this is what my colleagues thought about my condition, what would they think about me?
At the end of school, I had to do a presentation in front of all my peers, physicians and teachers. I presented a case study on fibromyalgia and revealed, at the end, that it was about me. I started weeping right there at the podium. I sobbed uncontrollably in front of hundreds of people and I couldn’t stop. For so long I’d been hiding this secret. I looked fine on the outside, but on the inside, I was going through hell.
Most importantly, I wasn’t making it up. And I wasn’t alone.
After the presentation, I was shocked at the amount of people who lined up to thank me for talking about fibromyalgia. So many people said they had family, friends or patients going through a similar situation. The reaction was so positive — it gave me hope that things could change.
2023
After school, I dedicated my career to fibromyalgia and pain conditions. Thankfully, the medical community changed and fibromyalgia is a recognized chronic condition and there are FDA-approved medications available to help treat it, along with a variety of alternative treatments that can be helpful.
The problem is that fibromyalgia is far more complex than just taking medication. Each person is different and some people really struggle to find any relief. I’m lucky in the sense that medication and lifestyle help me stay around a 2 or 3 on the pain scale. It’s manageable. And in the absence of a cure, that’s all anyone with chronic pain wants — to feel good enough to do the everyday things you have to do.
In 2016, I published the book, “The Fibromanual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor,” inspired by that desperate trip to the bookstore so many years ago. The information still holds up today, but there’s also so much new research and insight into fibromyalgia out there. It gives me hope that one day soon all of us with fibromyalgia can defeat it.
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