Working with your FM doctor

When a health care provider suspects a diagnosis of fibromyalgia, often s/he will refer the patient to a rheumatologist to confirm the diagnosis. This may take one or more visits. Sometimes the rheumatologist will continue to follow the patient but often the patient will be referred back to the primary care provider for continued care.

As with any condition, health care providers vary in their knowledge of fibromyalgia, and even in their attitude toward this condition. If you feel that you are not getting appropriate care from any doctor, a frank discussion at the next appointment may help. Lean more about Working with your Health Care Provider.

Clinical Guides for Fibromyalgia

Jain AK et al, "Fibromyalgia Syndrome: Canadian Clinical Working Case Definition, Diagnostic and Treatment Protocols—A Consensus Document," l Journal of Musculoskeletal Pain 11, No. 4 (2003): 3-107. Co-published simultaneously in The Fibromyalgia Syndrome: A Clinical Case Definition for Practitioners, pp. 3-108, 2004. Editor: I.. J. Russell. ISBN: 0-7890-2574-4. © Haworth Press Inc. This is the 2003 Canadian FM Definition Consensus Document.

FM Guide for Pharmacists, by Janice Sumpton, RPh, BSc.Phm, c 2008. Written by a pharmacist, but basically an overview of diagnosis, management, and treatment of the illness which could be helpful to any health care professional, also based on the Canadian Consensus Document. This was written before the newer drugs for FM were approved. Most of the treatment emphasis is on non-pharmaceuticals. FM-CFS Canada home page

"Fibromyalgia Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners, An Overview of the Canadian Consensus Document," by Bruce Carruthers, M.D. and M. I. van de Sande, c 2005-2006 (30 pp.) This is an excellent overview for physicians with practical guidelines for diagnosis and treatment, based on the 2003 Canadian FM Definition Consensus Document.

Differential Diagnosis of ME/CFS and Fibromyalgia

Fibromyalgia (FM) is a common and chronic disorder characterized by widespread pain, diffuse tenderness, and a number of other symptoms. The pain is widespread, affecting all four quadrants of the body, and can be severe enough to interfere with routine daily activities. It migrates, can be achy, throbbing, shooting, or stabbing, and is worse in areas used most, like the neck or back.

Individuals often say they awaken feeling as if they hadn't slept. A sudden onset of profound fatigue can occur during or following exertion. Many other symptoms are common to fibromyalgia, including stiffness on waking, memory and concentration problems, excessive sensitivity of the senses, headaches, Temporomandibular Joint Syndrome (TMJ), irritable bowel, and bladder and muscle spasm.

Fibrositis, an older name, is still used interchangeably with fibromyalgia.

Although fibromyalgia is often considered an arthritis-related condition and is usually diagnosed and treated by rheumatologists, it is not truly a form of arthritis (a disease of the joints) because it does not cause inflammation or damage to the joints, muscles, or other tissues.

It is often associated with the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and sometimes confused with it.

Research authorities vary in viewpoint as to the relation of FM and ME/CFS, but the best research to date indicates that the two illnesses, while often associated, are different and separable—both in nature of causation and in their pathophysiologies (effects on processes in the body.)

The fact that the two illnesses are the province of separate specialties can also lead to diagnostic problems. As a rheumatologist is trained in rheumatological illnesses, there are occurrences of ME/CFS being diagnosed as FM when the physician is not well versed in the diagnosis of ME/CFS. And an infectious disease specialist may be prone to misdiagnosing FM as ME/CFS.

Therefore, when there is doubt about which illness a patient has, s/he should become familiar with the differences between the two illnesses and seek a physician who knows how to diagnose both illnesses.

Note that it is very common for a patient to be diagnosed with both FM and ME/CFS.

Learn more about the diagnosis of Fibromyalgia.
Learn more about the diagnosis of ME/CFS

Diagnosing Fibromyalgia

In May 2010, the American College of Rheumatology (ACR) released new criteria for the clinical diagnosis of Fibromyalgia (FM). These replace older criteria published in 1990. Using the older criteria, besides having widespread pain on both sides of the body for at least 3 months, a patient needed to have pain (not just ‘tenderness’) present in 11 out of 18 specific tender point sites in order to be diagnosed with FM.

The new criteria recommend that the tender point examination be replaced with a combination of a widespread pain index (WPI) and severity scale of symptoms (SS) as the revised standards for the diagnosis of FM.

Note: There is a new blood test for Fibromyalgia that is being developed by a private clinic. Independent validation of this test has shown mixed results so far.


The 2010 ACR criteria for FM diagnosis

The new criteria for FM diagnosis were developed during a 2010 study intended to create a simple, efficient and uniform standard that would be used in the clinical diagnosis of FM, and that would also be easy to use in primary and specialty care settings.

The new standards were designed to:

  • eliminate the use of a tender point examination
  • include a severity scale by which to identify and measure characteristic FM symptoms
  • utilize an index by which to rate pain

In short, the study concluded that the most significant diagnostic variables were the “widespread pain index” (WPI) and the categorical scales for cognitive symptoms, unrefreshing sleep, fatigue, and other somatic symptoms. These categorical scales were added up to create the “symptom severity score” (SS) scale.

Computing the Widespread Pain Index and Severity Scale Symptoms Scores

The new criteria recommend that the tender point examination be replaced with a combination of a widespread pain index (WPI) and severity scale of symptoms (SS) as the revised standards for the diagnosis of FM.

The Widespread Pain Index is scored by asking the patient about whether pain was experienced in the last week in 19 different areas of the body. Score one point for each area (total WPI score is from 0 – 19).

The Symptom Severity Scale rates the severity in the last week of the following symptoms from 0 (no problems) to 3 (severe, life-disturbing):

  • fatigue
  • waking unrefreshed
  • cognitive symptoms.

In addition to these three, the severity of any/all other symptoms is rated from 0 to 3. This results in a total SS score of from 0 – 12.

For more detail, see this chart [2010_diagnostic_criteria_graphic.pdf]

Making the diagnosis based on the scores

Using these new criteria, a diagnosis of Fibromyalgia will be made on the following basis:

  • The values and ranges allowed for the WPI and the SS scales should meet one of the combinations: WPI >7 AND SS >5 or WPI 3–6 AND SS >9.
  • Symptoms have persisted at this level for the past 3 months.
  • The patient does not have any other disorder or cause to explain the pain.

Why new diagnostic criteria were needed

This major revision of the diagnostic criteria was precipitated by numerous shortcomings of the 1990 ACR standards. Dr. Robert M. Bennett of Portland, Oregon, one of the FM specialists who helped to create the original criteria, discussed some of these problems in a recent FM publication.

Dr. Bennett stated that considerable skill is needed to correctly check for a patient’s tender points (i.e., digital palpation that is done with certain amount of applied pressure), yet this technique is not typically taught at most medical schools.

Many primary care physicians have been avoiding tender point examinations, or if the exams were performed, they might often have been done incorrectly.

It is thought that a percentage of patients who likely have FM have not been diagnosed with it, either due to poor examination of their tender points or not having the minimum number of required tender points. As a result, physicians had already started to rely on symptoms commonly found in FM patients (i.e., sleep problems, decreased mental clarity, forgetfulness, and impaired function during daily activities) when making a diagnosis of FM, but with no consistent standards in place.

Other specialists mentioned in their criticisms:

  • that the excessive focus on tender points, which had not improved overall medical knowledge about the cause of pain in FM
  • that the examination of tender points also did not accurately measure the effectiveness of treatments (i.e., treatments which might help FM patients may not cause any changes to their tender points)
  • that the fluctuation of pain and presence of many other symptoms had been long overlooked
  • that studies of FM were disproportionately limited to females.

One of the study authors, Dr. Robert S. Katz, a rheumatologist at Rush University Medical Center, elaborated on this discrepancy in a June 2010 issue of Science Daily, "The tender point test also has a gender bias because men may report widespread pain, but they generally aren't as tender as women. Fibromyalgia may be under-diagnosed in both men and women because of the reliance on 11 tender points, rather than considering other central features of the illness.”

However, most researchers felt the old criteria had helped to bring the science and recognition of FM to where it stands today.


A new blood test for Fibromyalgia?

In 2012, Bruce Gillis, M.D. published a paper reporting “Unique immunologic patterns in fibromyalgia.” 1 On the basis of these findings, a new blood test 2 for diagnosing Fibromyalgia was developed and patented by Dr. Gillis. While there has been additional research 3 supporting these findings, there is also caution 4.

To date, the test is only available through one laboratory, Epic Genetics, a biotech startup founded by Dr. Gillis 5. The test costs approximately $775, which may or may not be covered by insurance.


References

The study supporting the revised criteria was published in the May 2010 issue of Arthritis Care & Research titled, "The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity." The authors of the revised criteria are Frederick Wolfe, Daniel J. Clauw, Mary-Ann Fitzcharles, Don L. Goldenberg, Robert S. Katz, Philip Mease, Anthony Russell, I. Jon Russell, John B. Winfield, and Muhammad B. Yunus. Read the full text of the article.

1. Behm et al., BMC Clinical Pathology 12 (2012):25. Full text is available at http://www.biomedcentral.com/1472-6890/12/25 accessed on 8/22/2015

2. https://thefibromyalgiatest.com/ accessed on 8/22/2015

3. http://www.fmcpaware.org/second-study-on-blood-test-for-fm.html accessed on 8/22/2015

4. https://www.arthritiswa.org.au/news/view/fact-or-fiction-the-fm-test.html accessed on 8/22/2015

5. https://www.genomeweb.com/proteomics/despite-researcher-criticism-epicgenetics-fibromyalgia-test-does-750k-sales-firs accessed on 8/22/2015