You are here

Living with Fibromyalgia for 15 Years

Corbis Images

My first pain experience was at age five. I was grocery shopping with my mom when a dizzying spell of nausea took my breath away. I ran to the store bathroom in a cold sweat, sick to my stomach—the first of many times similar symptoms would cause me problems. Although growing up, “symptoms” were not symptoms. They were just daily life.

I couldn’t eat without at least mild GI discomfort—sometimes full-blown, gut-churning pushback from my body (always attributed to a “finicky” stomach). I’d suffer from unexplainable leg cramps and shin splints in my early teen years—my parents called these issues “growing pains." By 16, I had a constant burning sensation in my bladder that mimicked a UTI, although doctors never found one. (Here, 4 Surprising Causes of Urinary Tract Infections.)

I also experienced chronic allergies, splitting headaches, year-round hand rashes, and intense period cramps that made day-to-day life brutal. I’d mention these things to my doc, but while he’d occasionally order a blood test or imaging, I was always diagnosed the same way: clinically normal. Eventually, I stopped mentioning my issues. The more you have symptoms you can’t explain, the more you start to explain away your symptoms. I started to think that at best, I wasn't great at handling pain. At worst, I was a hypochondriac.

An Answer—Finally
The summer I was 19, I woke up one morning with raging back pain—it felt like I’d been lying on knives all night. I tried to ignore it, but it got worse—not better. I wound up in the E.R. on five separate occasions over six weeks. Jabbing jolts and an underlying tenderness started in my flank (a kidney stone?), moved to my legs (a blood clot or an aortic aneurysm?), and traveled up my body for chest pains, a stiff neck and back, and severe head tenderness. I felt like a zombie, with what little life I had left in me slowly being drained from my body. I took time off from college; my social life was nonexistent. My livelihood was destroyed.

In desperation—E.R. doctors never found anything suspicious on my scans or in my blood work—my family and I began researching conditions that might explain my symptoms. After weeks of digging, we found fibromyalgia—a chronic condition characterized by widespread pain and other varied issues: fuzzy memory, sleep disturbances, muscle spasms, GI problems, or urinary frequency and urgency. From my research, it appeared as though I had 14 of the 15 key symptoms.

"This was it," I thought.

Find out how the writer was able to get doctors to officially diagnose her.

The problem was, I also discovered that the average fibro diagnosis can take years. That's because there's no one test to identify the condition, so doctors have to rule out all other possible problems with others tests before handing down an official diagnosis. So I insisted on those tests. And when I felt too weak to insist, my family insisted for me. Because we stressed urgency, my docs found open slots for me to receive the tests I needed.

Over those years, physicians ruled out everything from deep vein thrombosis and pulmonary embolism to heart attacks. Doctors checked for autoimmune diseases, lupus, and cancers. I had CT scans. I had complete blood work-ups. I had MRIs. I had an EMG, in which doctors shocked my muscles with electrodes. I had a colonoscopy.

Finally, I was officially diagnosed with fibromyalgia.

The Chronic Pain Epidemic
Doctors aren’t entirely sure why fibromyalgia develops, but think it may have to do with neurosensors in the brain overreacting to stimuli. Basically, sensors misread body signals, interpreting them as pain. (See: 7 Symptoms You Should Never Ignore.) Experts say only about two percent of the population (roughly five million Americans) suffers from fibromyalgia. However a few years back, the Institute of Medicine found a whopping 116 million Americans suffer from chronic pain yearly. Nearly all of this chronic pain is undertreated. Because pain is not a disease, the approach to treating it isn’t always easy, clear-cut, or effective. Sometimes there’s no acute clinical cause—so even well-meaning doctors may not know how to help.

Although I’m significantly better, I’m still rebuilding my social life and my relationships. I'm picking back up with activities I loved—but let fall by the wayside—while I was sick. I’ve finally kicked pain’s butt with a killer treatment plan: a little willpower and determination, a lot of stress management, adequate bodily care, the right amount of sleep, effective medications, and regular doctor’s appointments. My symptoms are finally under control, and it feels great.

That said, I let pain reign unchecked in my body for a lot of years—and I won’t get those years back. If I could tell you one thing, it would be this: Don’t suffer. Don’t let lingering issues take a season, a year, or a decade from you. Life’s too short (and too sweet) to let pain slow you down. If you're suffering, here's what to do.

1. Pay attention. Pain is your body’s way of telling you that you need to notice something. It's not "normal" if pain is persistent and irritating you enough to affect your quality of life—even mildly. Just because your pain is only a little bit worse than last week doesn't mean it's fine; it means it's getting worse. Address it now. 

2. Write down your symptoms. Call your doctor and schedule an appointment. And don’t stop pressing the issue until you’re satisfied with the results.

3. Trust your gut. Every time a doctor would tell me I was fine, a little voice inside me said, “You know you’re not.” And that little voice was right. Insist on tests or treatment—it could be medication, physical therapy, or numerous other avenues. Ask about your options. If you don't insist, doctors will be slow in scheduling, and your pain will be slow in getting better.​