How do you know if your pain symptoms are related to fibromyalgia, as opposed to another medical condition? In their quest for answers, individuals with ongoing pain often see one healthcare professional after another, walking away with conflicting diagnoses. If you struggle and wonder whether you have fibromyalgia or not, asking the right questions is essential for getting the help you need.
The Long Journey
Chronic pain patients often spend years searching for answers, and ultimately, a clear diagnosis of what is wrong. For many—before their pain even begins—they experience sudden tiredness and unexplained muscle aches. Often, it’s this fatigue that first sends them to their primary care doctor looking for help. After exhaustion sets in, joints begin to hurt, prompting a visit to an orthopedic doctor, or rheumatologist. When their ability to think and remember becomes a problem, they end up seeing a neurologist.
After many tests and a great deal of time and money spent, patients are typically left without any clear answers for their symptoms. This history of unexplained problems is often the first clue that chronic pain may be at the root of it.
A recent study found that physicians missed the fibromyalgia diagnosis in 49.6 percent of patients and wrongly diagnosed 11.4 percent of patients with fibromyalgia when they did not meet the criteria. Even though there are an estimated 4 million U.S. adults with fibromyalgia according to the Center for Disease Control and Prevention , there are healthcare professionals who are uncertain the condition exists. This leads not only to misdiagnosis, but patients feeling shamed by their physician who suggest the symptoms are simply psychological.
Giving Pain a Name
Central to the challenge of finding the correct diagnosis and treatment is the fact that fibromyalgia does not develop overnight. Rather, gradual changes in the overall functioning and sensitivity of the nervous system lead to the symptoms of fibromyalgia.
- For many patients, tiredness and fatigue are among the first symptoms to appear. This type of tiredness generally goes beyond feeling a bit sleepy or wanting a Sunday afternoon nap. Instead, a sense of heaviness and feeling drained from the activities of daily life is reported.
- Small changes in memory and thinking begin to appear. Things that were once easy to accomplish now feel like an immense challenge—following a familiar and simple recipe while cooking dinner, for example. These small changes in memory and thinking can lead to a more pervasive problem, often referred to as “fibro fog.”
- One question I find helpful to ask patients is this: “How often do you find yourself dropping things?” For some patients with fibromyalgia, their answers are long and varied. But concerns about their dropped coffee cups, car keys, pens, boxes, or cartons of milk are often dismissed, as these patients never think this may be a sign of the muscle weakness that comes with fibromyalgia.
- A key characteristic of fibromyalgia is widespread pain, aching muscles, and tender points felt throughout the body. If you find hugs or gentle touch from friends and family uncomfortable or painful, this might be due to the oversensitivity of the nervous system found in fibromyalgia.
- Many doctors have difficulty in making a clear diagnosis of fibromyalgia because complaints about this pain can differ. Patients often report that pain moves to different areas of the body, or that it shows up with differing sensations. Pain that starts as a burning sensation may become sharp; aching and throbbing symptoms can follow soon after.
- There are also reported symptoms of stiffness in the morning, numbness and tingling sensations in the arms and legs, plus joint pain. This type of joint pain is often mistaken for arthritis.
- To make the overall picture of diagnosing fibromyalgia even more complicated, there are problems with sleep, anxiety, depression, and gastrointestinal problems, like irritable bowel syndrome. Each of these symptoms may lead a person to seek help from a different specialist, all of whom may miss the bigger picture of a fibromyalgia diagnosis. It is no wonder, then, why patients make so many trips to different doctors looking for answers.
The Next Step
If you find yourself struggling with the symptoms described here, a good first step is to ask your primary care doctor to complete a medical exam using the American College of Rheumatology (ACR) Preliminary Diagnostic Criteria for Fibromyalgia. This type of medical interview helps to educate patients about fibromyalgia. And it may help to evaluate if such a diagnosis is useful in explaining your symptoms, too.