Most of us take our bodies for granted.

We wake up, sit comfortably at work, enjoy the freedom to join friends and family in activities, and end our day cozied and content in bed. But for the five million Americans living with fibromyalgia, every moment can be filled with soreness and aches and pains that disrupt everything—from work to play, and even sleep.

Fibromyalgia is a disease marked by chronic pain and tenderness in one’s joints, muscles and soft tissues. Sufferers often experience fatigue, sleep disturbances, headaches, anxiety and depression. Because of the constellation of ailments associated with the disease, people are often misdiagnosed or even go undiagnosed for years before they receive help. In honor of National Fibromyalgia Awareness Month, Style decided to take readers through the painful truth about the disease and talk about new treatments to help sufferers.

LIVING WITH FIBROMYALGIA

Preston Ames knows all too well how challenging it can be to deal with the ups and downs of fibromyalgia. In 1999, at the tender age of 12, what began as a typical childhood cold took a turn for the worse. Within four days, Ames began suffering from excruciating lower back pain and excessive tiredness. Concerned, Ames’ parents had him tested for all of the common childhood illnesses, like the flu and mononucleosis (mono), as well as some of the more serious ones, but everything came back negative.

Yet his parents wouldn’t give up. Ames had taken to spending upwards of 18 hours a day sleeping, fighting against constant pain and what he refers to as “bone deep fatigue.” It took a year of doctors’ appointments—having visited 14 different doctors in all—and countless hours of research, before Ames and his family were able to get a diagnosis of fibromyalgia. “Because it was so debilitating, my parents were diligent [in finding an answer].” As for the lengthy amount of time it took to finally be diagnosed, Ames says, “We were very fortunate that it was only one year.”   
What followed his diagnosis was an eight-year battle against the incapacitating pain and fatigue of fibromyalgia. “There isn’t really any tried and trusted routine for treating the disease,” he says. Having been diagnosed before the advent of any of the newer drug treatments for fibromyalgia, Ames did all he could to relieve the symptoms, including physical therapy, diet modification, and carefully planned fitness and exercise routines. Over time, he achieved a manageable level of functionality.

DIAGNOSING THE DISEASE

Ames’ case is somewhat unusual, as fibromyalgia usually onsets in adulthood and is commonly diagnosed in conjunction with other conditions such as chronic fatigue syndrome, irritable bowel syndrome, hypothyroidism, Lyme disease and depression. Yet, getting the diagnosis can be a massive feat in itself.

Dr. Thitinan Srikulmontree, rheumatologist with Dignity Health at Mercy San Juan Medical Center, says, “The fact that there is no obvious abnormality on physical examination, laboratory testing or imaging studies in fibromyalgia makes establishing the diagnosis even more challenging,” siting a recent British study (BMC Health Serv Res. 2010 Apr 26; 10:102), which found it takes a patient 2.3 years, on average, to receive a diagnosis, usually after presenting their symptoms to more than three different physicians.

The initial criteria for diagnosis is the presence of widespread pain for at least three months, as well as pain and tenderness in at least 11 of 18 areas including arms (elbows), knees, chest, neck, rib cage, shoulders, lower back, thighs and buttocks. Symptoms expand to include memory and concentration problems, numbness or tingling in the hands and feet, tension headaches or migraines, and a reduced ability to exercise. Dr. Srikulmontree explains that memory and concentration problems are often dismissed but are important indicators of the disease. “People who are normally highly functional and sharp can find themselves having difficulty focusing, processing information or doing tasks that require quick thinking. We call this ‘fibro fog.’”

CAUSES

Though fibromyalgia has been linked to fatigue, sleep problems, headaches, depression and anxiety, the cause remains unknown. It has been suspected physical or emotional trauma, sleep disturbances, infection and/or virus, or even an abnormal pain response may all be possible causes for the disease, but no concrete correlations have been found.

TREATMENT

In recent years, new drug therapies have become available specifically to treat the symptoms of fibromyalgia, including Savella and Cymbalta, but patients often try a variety of treatments including antidepressants, muscle relaxants, physical therapy and various other forms of stress relief. Ames says that finding what’s right for each individual (treatment-wise) is easiest when they’ve formed a partnership with their medical professional. Since the symptoms are so debilitating and the causes extremely elusive, those with fibromyalgia often experience quite a bit of discrimination and discounting. Ames says, “The biggest thing is to find your advocate in the health care system,” and adds, “The same goes for friends and family.”

Dr. Srikulmontree wants her patients to remember that a positive disposition and remaining connected to others are important for conquering life with fibromyalgia. “The good news is fibromyalgia itself will not cause any damages to your joints or your body,” she explains. While the symptoms of fibromyalgia can be frustrating and defeating, Dr. Srikulmontree points out, “Being inactive will make your muscles even weaker, your fitness level lower and your pain worse in the long-term. It can also negatively affect your relationship with friends and family.” She gives practical advice to those fighting for normalcy in a life filled with pain. “If you find that you cannot do the same activities you normally can,” she says, “try dividing your tasks into smaller bits, setting up your routine, and slowly building up your strength a little at a time.”

As for Ames, he has found a stellar personalized treatment plan that has him pain-free 98 percent of the time. How did he do it? He offers this advice, “Be open-minded to new suggestions for treatments because it really is about finding what works for your case.”