Fibromyalgia: A Patient’s Perspective

IT ALL STARTED with a positive tuberculosis test. In 2002, Linda Thornrose was working in a physician’s office when a routine exam catapulted her into a two-year ordeal of complex treatments and eventual liver failure. Two years later, Linda was diagnosed with combined variable immune deficiency, a primary immune deficiency disease. Her treatment plan centered on intravenous infusions of immune globulin every 28 days, but rather than getting better, Linda’s symptoms grew worse. “I was becoming more and more fatigued and began having pain all over my body. Since there was a history of osteoarthritis in my family, I made an appointment with a rheumatologist,” recalls Linda. “Thank God for my physician, who gave me a thorough exam. He said that I tested positive for all ‘trigger points’ of fibromyalgia; I had never even heard of it.”

Linda’s physician prescribed Vioxx, a popular arthritis treatment medication, which seemed to ease her pain. However, that drug was soon taken off the market, and she was switched to a second and, finally, a third prescription that led to a severe outbreak of hives. Linda was also prescribed various antidepressants that resulted in weight gain and, later, withdrawal symptoms. Eventually, she was prescribed Savella (milnacipran HCl tablets) and is currently on 25 mg BID, along with daily narcotic pain medications. Because of her worsening health, Linda left her job in 2006. She says the cycle of prescription medications and troubling side effects continued as her physicians experimented to try to find combinations that would produce the best results. “The pain never goes totally away, and I really hate all the humiliation that comes with having to take so many narcotics,” she explains.

A Misunderstood Illness

Like many fibromyalgia patients, Linda has encountered the perception that the disease is all in her head. Even friends and family have turned away, frustrated by her inability to make and keep plans. Linda also deals with chronic insomnia, a common condition associated with fibromyalgia, and the resulting exhaustion and fatigue make it difficult to function. “Shortly after my diagnosis, I went in for a sleep test since sleep problems are a common issue that can make symptoms worse,” says Linda. “My results showed I stopped breathing an average of 33 times per hour. I was put on a CPAP mask for sleep, and it has been a big help — once I get to sleep.”

Linda feels fortunate that her doctor suspected fibromyalgia early on, and advises patients who display common symptoms of the illness to seek an evaluation from a rheumatologist. She also encourages online research and suggests patients seek out doctors who specifically treat fibromyalgia. “I was blessed to have a good doctor who diagnosed me right away, but I have learned so much more from my own research,” she says.

When it comes to being misunderstood, Linda says she wishes friends and physicians would recognize that this is a real disease and that it is chronic. “Everyone means well, they just don’t understand that there is nothing I can do to make myself better,” she says. “Just a word of kindness, a hug, offering to run an errand or bring a meal over during my difficult days would be great. Those types of things mean much more than always trying to fix me with advice or assuming I can do something to make it go away.”