Diagnosing Fibromyalgia

Fibromyalgia Symptoms Can Be Hard to Pin Down

Chronic widespread pain is the main symptom of fibromyalgia. This includes :

• Pain for at least three months
• Pain above and below the waist
• Pain on both sides of the body

This could include combinations of neck pain, shoulder pain, back pain, hip pain, knee pain, feet pain, and pain in just about every part of the body. People with fibromyalgia may also have:

• Hyperalgesia (increased pain in response to normally painful contact)
• Allodynia (pain in response to to normally nonpainful contact)

None of this pain will show up on an x-ray or blood test. That’s one reason why getting a diagnosis of fibromyalgia from your doctor may take so long. In fact, it takes an average of more than 2 years to get an accurate diagnosis of fibromyalgia.

Fibromyalgia Diagnosis Can Be a Long, Difficult Journey

Even with a doctor who is very experienced with fibromyalgia, diagnosis can take time. This can be frustrating—for the patient and the doctor.

Doctors often diagnose fibromyalgia by first ruling out other conditions that have similar symptoms to fibromyalgia.

• Other conditions can occur together with fibromyalgia
• This can confuse diagnosis. (See Common Overlapping Conditions)
• Typically, a doctor may have to order numerous tests before he or she can rule out other conditions. In fact, the tests that a doctor orders might be quite different on a patient-by-patient basis. Why? While pain is the core symptom of fibromyalgia, patients can experience their fibromyalgia pain differently. Patients also have different ways of presenting their symptoms

And this last point presents yet another challenge. Doctors sometimes struggle to get the information they need from their undiagnosed fibromyalgia patients. Sometimes, the problem is that patients may have a hard time clearly describing their symptoms.

People with fibromyalgia often face a lack of compassion and understanding from others around them. Sufferers may feel isolated and angry.

• People say that they look too good to be sick
• Family members expect them to be able to get up and go
• Friends don't understand why appointments/dates are canceled
• They stop telling people how they are feeling to avoid being seen as “a whiner”

For some, this reluctance to talk about their symptoms can be a serious roadblock to diagnosis.

On the flip side, others—angry and tired of a long diagnostic process—begin to show their desperation in the doctor’s office. Unfortunately, this can sometimes backfire and only add more confusion to the process of getting a diagnosis. The doctor, again, may have trouble keying in on the main symptoms.

For both cases, the key to improved communication may be a prepared short, written description of symptoms. The patient can bring this list to the doctor’s office. (See Preparing for Your Next Doctor’s Visit for Fibromyalgia Pain Relief.)

A Doctor’s Tools for Diagnosing Fibromyalgia

Doctors who are experienced with diagnosing fibromyalgia often listen for certain terms and/or conditions they associate with fibromyalgia. These may include:

• Pain—terms like: widespread, all over, everywhere, constant, for a long time
• Chronic fatigue—extreme, nonstop exhaustion that affects their ability to do what they want to do
• Unrefreshed sleep—patients may talk about their ability to fall asleep and stay asleep an adequate amount of time, but wake up feeling like “they didn’t sleep at all”
• Tenderness—handshakes, hugs, and other usually nonpainful interactions are now painful
• Concentration or memory problems—also called “fibro fog”

American College of Rheumatology Guidelines

Aside from a patient’s description of symptoms, many doctors rely on the American College of Rheumatology’s guidelines to diagnose fibromyalgia. According to these guidelines, to receive a fibromyalgia diagnosis, the patient must have:

• Widespread pain in all 4 quadrants of the body for at least 3 months. (This includes both the right and left sides of the body and above and below the waist)
• Tenderness or pain in at least 11 of the 18 specified tender points when pressure is applied

These tender points, also known as tender spots, may be found in the following places:

• Front and back of the neck
• Mid- to upper-back of the shoulders
• Upper chest
• Elbows
• Upper buttocks
• Hips
• Knees

Fibromyalgia "tender points" from the National Institute of Arthritis and Musculoskeletal and Skin Diseases.

In 2010, the American College of Rheumatology published another set of guidelines for diagnosing fibromyalgia. These are preliminary guidelines and include a widespread pain index that assesses the number of painful body regions, and a scale that assesses the severity of symptoms such as fatigue, sleep problems, comprehension problems, and others.

Your doctor may use one or both of these assessment tools in diagnosing your condition.

The health information contained herein is provided for educational purposes only and is not intended to replace discussions with a health care provider. All decisions regarding patient care must be made with a health care provider, considering the unique characteristics of the patient.