Why is fibromyalgia difficult to diagnose?

Diagnosing fibromyalgia can be difficult. No one knows the exact cause of fibromyalgia, but there are several theories. Research indicates that there may be an abnormality in the part of the brain that processes pain signals. Fibromyalgia can be triggered by an injury, illness or extreme emotional stress.

In the last two decades, however, fibromyalgia research and advocacy have increased dramatically, which has helped doctors make more accurate diagnoses. More people are now aware of fibromyalgia symptoms, its potential causes and the treatment options.

If you feel you have some of the symptoms of fibromyalgia, talk with your doctor or healthcare provider about your individual symptoms and diagnosis.
Jennifer N. Caudle, DO
Family Medicine
Fibromyalgia is a very difficult condition to diagnose, since there isn't a specific test to confirm it. In this video, family medicine specialist Jennifer Caudle, DO, discusses why it may take a while to get a proper diagnosis for fibromyalgia.
Johns Hopkins Medicine
Administration
The generalized and nonspecific symptoms, which include diffuse pain, aches, and stiffness, make fibromyalgia difficult to diagnose. Fibromyalgia is a clinical diagnosis; there are no laboratory or imaging tests that make the diagnosis.

A fibromyalgia patient's diagnosis depends greatly on their own explanation of the symptoms and their doctor's training. It is not uncommon for fibromyalgia patients to spend years going from doctor to doctor until a diagnosis is made. One study says patients usually have to pursue a diagnosis for up to seven years on average to find an accurate one.
William B. Salt II., MD
Gastroenterology
Regardless of cause, diagnosis of fibromyalgia is based upon recognition, symptoms, signs, and awareness.
This answer is based upon an outstanding article in the May, 2011 issue of a  medical journal called, Mayo Clinic Proceedings entitled, "Improving the Recognition and Diagnosis of Fibromyalgia," which is available on the Web at:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084648/
  • Recognition: fibromyalgia remains undiagnosed in as many as 3 out of 4 people with the condition. The average amount of time before a diagnosis of fibromyalgia is made is 5 years, resulting in delayed treatment and potentially suboptimal medical care.
  • Symptoms:  chronic widespread pain, fatigue, and sleep disturbances
  • Signs: (signs are visible and detected by the doctor), so the physical examination findings are normal in fibromyalgia, except for generalized bodily tenderness, evaluated by counting tender points found with finger examination pressure applied to several regions of the body. Since women are more sensitive to painful stimuli than are men, they have a greater response than do men during the diagnostic tender point examination.
  • Awareness refers to considering diseases that commonly mimic fibromyalgia and/or that can coexist as comorbidity with fibromyalgia. These include medication-related muscle pain from statins, certain types of inflammatory arthritis, hypothyroidism, mood/depression/anxiety disorders, and other regional pain syndromes. Regional pain syndromes are symptom syndromes that may share certain causative (pathophysiologic) features with fibromyalgia: irritable bowel syndrome, tension-type headache/migraine, interstitial cystitis or painful bladder syndrome, chronic prostatitis or prostadynia, temporomandibular disorder, chronic pelvic pain, and vulvodynia.

This author addresses the interrelationships and cause of these disorders in answering the Sharecare questions: "What causes fibromyalgia?" and "What causes irritable bowel syndrome (IBS)?"

Routine laboratory testing (if not already performed within the past 6-12 months) is frequently obtained to evaluate other possible causes of symptoms or signs, but it is not required to establish the diagnosis of fibromyalgia.
 
 
 
Fibromyalgia is not a diagnosis of exclusion and should be diagnosed by its own characteristic features. Even though there is diagnostic criteria that has been developed through the American College of Rheumatology, very few family practice doctors or other specialists understand or know about the criteria. Currently, rheumatologists are the most knowledgeable, efficient specialists for diagnosing fibromyalgia.

Fibromyalgia as an illness is still not taught in many medical schools so new, inexperienced physicians are not aware of fibromyalgia as an illness much less know how to diagnose it. It is estimated that it can take up to an average of five years for a person with FM to receive an accurate diagnosis.

Laboratory tests for other illnesses often prove negative; many FM symptoms overlap those of other conditions. This has led to extensive investigative costs and frustration for both the doctor and patient. Another essential point that must be considered is that the presence of other diseases, such as rheumatoid arthritis or lupus, does not rule out an FM diagnosis.

The good news is that although historically it has taken years and visits to multiple doctors to find out what is wrong with affected people, healthcare professionals are increasingly exposed to educational programs that teach them how to use both of the American College of Rheumatology (ACR) criteria to make an accurate FM diagnosis. Once a diagnosis is made, it hastens the process for people with FM in learning about their illness and treatment options.
Fibromyalgia is usually a diagnosis of exclusion. This means that we have to exclude all other conditions that may act like fibromyalgia such as chronic back pain, different types of arthritis, and diseases such as lupus. When your doctors clear you of these diseases, they will then use criteria that were established by the American College of Rheumatology. What your doctor will look for is pain that is on both sides of your body and above and below your waist. They will also look for pain in nine paired areas on your body. If you have pain in at least 11 of the 18 points as well as on both sides of your body and above and below the waist, then your doctor will likely diagnose you with fibromyalgia.
Dr. Mehmet Oz, MD
Cardiology (Cardiovascular Disease)
Fibromyalgia can be accurately diagnosed, but it's not always easy to do so. People can go years -- in some cases, a lifetime -- with a misdiagnosis. The primary symptoms of pain, fatigue and inability to concentrate are pretty common, after all. But doctors have more specific criteria. Many use a tender points scale developed by the American Academy of Rheumatologists (AAR) many years ago, which identifies 18 tender points; if you have 11 or more, that's a good indication of fibro. Other doctors use a different severity-of-symptoms-based approach that the AAR proposed more recently. Because part of the diagnosis of fibromyalgia is ruling out other diseases with similar symptoms like lupus, the best specialist to accurately diagnose fibromyalgia is often a rheumatologist.
Dr. Michael Roizen, MD
Internal Medicine

Because there are no lab tests or X-ray scans that can diagnose fibromyalgia, this syndrome is difficult to diagnose. Many people with fibromyalgia go to many doctors for years before they receive a proper diagnosis. Sometimes they are told their symptoms of muscle pain, fatigue, and sleeplessness are in their head. Yet, symptoms of fibromyalgia are very real and need effective treatment. 

Piedmont Heart Institute
Administration
Fibromyalgia is characterized by widespread pain over both sides of the body and above and below the waist that is accompanied by 11 of 18 trigger point tenderness.

The diagnosis is difficult as there is no diagnostic test and other diagnoses must be excluded first.

Continue Learning about Fibromyalgia Diagnosis

Important: This content reflects information from various individuals and organizations and may offer alternative or opposing points of view. It should not be used for medical advice, diagnosis or treatment. As always, you should consult with your healthcare provider about your specific health needs.