“Fibromyalgia pain is a cruel trickster–a shape shifter. You never know when it will show up, where, or what disguise it will take,” says Claudia Burney, a writer-friend diagnosed with the illness in 2005. Claudia and I have more than the love of words in common. We’ve both fought the “fibro” for several years. My own diagnosis came in 2008 when, after 25 years of unexplainable pain in my arms and legs, stiffness, fatigue and numbness, I visited a rheumatologist, fully expecting to hear that I had arthritis.
“Your joints are fine, Tracey,” the doctor said. Several blood tests later, he concluded that pain was the result of something I’d never heard of: fibromyalgia.
Characterized by intense muscle pain all over the body or at localized tender points, chronic fatigue, memory problems and disordered sleep, fibromyalgia is a chronic condition which occurs either on its own or in conjunction with other musculoskeletal syndromes like lupus or rheumatoid arthritis. While anyone is susceptible, it is more frequently found in women ages 20 to 50.
The Difficulty Is in the Diagnosis
It’s not uncommon for fibromyalgia to be misdiagnosed or missed completely. “Fibro baffles physicians,” Burney says. This is likely because it either mimics or operates alongside other conditions. Only through the process of elimination does a diagnosis of fibromyalgia generally come about, often long after symptoms first appear. Additionally, doctors usually require evidence of a minimum of three months of pain in 11 to 18 “tender points” to confirm a diagnosis. Tender points can include arms, neck, thighs, shoulders and buttocks.
Early diagnosis is crucial. Many people wait too late to obtain an accurate assessment of their symptoms. Like me (“Oh, that’s just my arthritis”) or my mother (“Girl, you just have growing pains!”), they self-diagnose themselves for years until the pain and other symptoms become too excruciating to bear.
There is no cure for fibromyalgia ,nor any specific prevention of its onset. Fortunately, the potential source of the illness continues to be widely studied and usually falls into two schools of thought: an abnormal, neurological response to pain or a psychological response to emotional traumas such as post traumatic stress syndrome or childhood abuse. Some argue it’s a combination of both.
While the pain varies from deep aches to intense immobility, it’s often not the illness itself that is most frustrating. The psychological effects can be just as devastating. “Fibro [can] destroy relationships and damage your self-esteem,” Burney shares. It’s vital that individuals living with the disease have a support system of family and friends that can offer comfort and understanding, because when the illness comes calling, it can present in many ways—from extended hours in bed, anxiety or depression, to missed days at work.
The good news? Living with fibromyalgia (as opposed to suffering from it) implies a determination not to allow the pain to become the primary condition of one’s entire life. While it can be easy to forget, with some effort, a person can still live a full and healthy life by managing the pain in several ways.
Kicking the Pain
From conventional medications like Lyrica and Flexeril, to alternative remedies like herbs and acupuncture (a personal favorite of mine), pain management techniques abound for those with fibromyalgia. I saw a significant reduction in fibro pain when I received acupuncture over the course of a year. Numerous studies have confirmed that acupuncture regulates the neurotransmitters in the brain that control pain. Dao-yuan Chou, a licensed acupuncturist in Philadelphia notes, “Acupuncture and Chinese herbs can be extremely effective in treating conditions like fibromyalgia. If administered by a qualified practitioner, these treatments are safe, with little side effects, and are aimed at assisting the patient’s body to recover the ability to heal itself.” As with any alternative treatment, you should consult your doctor first to determine any limitations you might have.
Studies also show fibromyalgia can be lessened through the reduction of stress, proper nutrition (gluten- and dairy-free diets have worked well for me) and good old-fashioned exercise. Joint-conscious cardiovascular exercise, like walking or swimming, is a great way to battle fibro. Light strength training and flexibility exercises (think: yoga and Pilates) are also great for managing symptoms. While fibromyalgia pain initially may make exercise seem like unnecessary torture, the pain-inhibiting properties of the serotonin and adrenaline released during a jaunt at the gym is actually the best way to manage both the pain and anxiety.
In the end, living with fibromyalgia starts with working closely with your doctor to find a pain-management technique that works, while taking ownership of necessary lifestyle changes. Burney says it best: “I have a few tricks of my own for fibromyalgia.”
Tracey M. Lewis-Giggetts is a freelance writer and the author of seven books. She can be found online at traceymlewis.com.