The Ill-Conceived Diagnosis of Fibromyalgia Save

I’m always amazed at how often fibromyalgia (FM) is either misdiagnosed or not diagnosed. Studies of out-patient rheumatology services have shown that FM is one of the top 2 or 3 diagnoses for new consultations.  If you're a rheumatologist and haven't diagnosed FM at least 5 times this week - then its time to go back to fellowship or the RheumNow remedial boot camp!

New patients with a history of FM, will in fact have FM when you evaluate them. The same cannot be said for those who claim a history of lupus, rheumatoid arthritis (RA), etc. Why is it that many physicians never diagnose FM and instead mistakenly label patients as having lupus, spondyloarthropathy or RA?   I believe such "laziness" is due to a lack of clinical skills, clinical acumen or diagnostic rigor.

More surprising is the patient with chronic pain, myalgias, arthralgias, fatigue, and a sleep disturbance and there is no consideration of FM.  I teach trainees and students to suspect FM first!  It's highly prevalent and this approach lends to more time and cost efficient evaluations.

I can best address this problem by offering up my clues for the diagnosis of FM. But, before I launch my “tips” on this facile diagnosis, let it be known that: 1) I am certain that FM is a real, diagnosable pain amplification disorder; 2) I see and care for patients with FM; 3) I have an evidence based plan for FM treatment; and 4) patients with inflammatory disorders (lupus, RA, Sjogrens) may also have FM, myofascial pain and sleep related musculoskeletal pain.

The diagnosis of FM can be based on the 1990 ACR criteria by Wolfe and colleagues requiring widespread pain and >11 of 18 tender points. Or you could go by the 2010 ACR revised criteria that give more importance to patient symptoms rather than tender points and results in a complex calculation of a widespread pain index (WPI) and a symptom severity (SS) scores.

While these are helpful for research and clinical trials, I prefer a practical definition of FM. The diagnosis of FM requires widespread soft tissue pain and tenderness, the lack of inflammatory or degenerative findings, and supportive features of fatigue, poor sleep, dysesthesias, spasmodic complaints (including headache, migraine, TMJ pain, PMS, spastic bladder or irritable bowel syndrome).

Yet 30 years of practice and thousands of consults have shown me other distinctive clues that heavily weigh in favor of a FM diagnosis. The following are predictive enough to encourage consideration of FM (although there may be exceptions to these “rules”).

Clues to a Fibromyalgia Diagnosis

• Widespread pain: widespread, numerous and impressive musculoskeletal symptoms whose history is not substantiated by physical findings (e.g., no synovitis, objective weakness, rash, etc.)
• Globally positive review of symptoms: if you use a survey form for intake of new patients, you can be sure that anyone who checks more than 20 boxes (symptoms) will have FM. This is also known as a positive organ recital.
• Notalgia: this term identifies those patients who bring so many notes to the visit that you hurt!  This includes too much ink on the page and four minute answers to a yes/no question.  This indicates the patient's inability to prioritize complaints, issues, and findings – hence they are all important.
• Multiple Chemical Sensitivities: patients with several or many drug, chemical or environmental sensitivities (this is driven by their extremely low pain thresholds).
• “I just don’t like taking medicines”: while this may be said and may be true, FM patients tend to overuse health care services, see numerous consultants (seeking a correct diagnosis) and are given numerous add-on prescriptions and therapies. Polypharmacy may be an identifier of FM; it is most certainly a harbinger of poor management and risk for drug toxicity.
• MSK symptoms in women with a history of augmentation mammoplasty will usually have fibromyalgia.
• Fibromyalgia should be suspected first in patients with MSK symptoms and a background psychiatric problems (e.g., anxiety, depression, bipolar disorder, schizophrenia, etc.)..
• Lyme disease in Texas: there is no Lyme disease in Texas (or other nonendemic states), yet there are many patients with MSK symptoms and abnormal but poorly sensitive Lyme (and other) serologies. Others who may have primary or secondary FM include hypermobility patients, Ehlers-Danlos syndrome, POTS, RSD or Complex Regional Pain Syndrome (CRPS).
• Hospitalized six weeks ago but still wearing their hospital ID bracelet: This falls under strange behavior, thus, MSK symptoms and strange behavior should lead to a consideration of FM.
• Exaggerated pain responses on exam: best described as “folds like a $20 card table when you touch them” or "pain=20 on a 0-10 scale".
• Patients with MSK symptoms, taking ADHD therapies (Adderall Concerta, Strattera, Vyvanse, etc.): the most common presentation here is arthralgia, red fingers/Raynaud’s, poor sleep and FM or myofascial pain. Amphetamine therapy amps them up and messes with sleep in doing so.
• Multiple autoimmune/inflammatory disorders: while it is possible that 2 autoimmune conditions (e.g., lupus, RA, Gout, ankylosing spondylitis, Hashimoto’s thyroiditis, Sjogren’s syndrome, Behcets, interstitial cystitis) may exist in the same person – it is infinitely more likely that one or both of these is the wrong diagnosis and that FM may instead be the right diagnosis.  This mistake is made by rheumatologists as well as primary care physicians.
• Other major red flags for underlying or coexistent FM: those diagnosed or labeled with Ehlers-Danlos, hypermobility syndrome, Chiari malformation, chronic fatigue syndrome, depression, anxiety, POTS (postural orthostatic tachycardia syndrome).
• Curiously, those with delayed pain responses. By this I mean that when doing an orderly joint exam, the patient who admits to pain in the joint you touched 3-5 joints ago is most likely to have FM. (It should also go without saying that a patient who has a TJC >20 joints is also likely to have FM.)
• For those who do practice metrics, very high scores with CDAI, SDA, RAPID3, or GAS - such as a score of greater than 30 almost always involves primary or secondary FM as a treatable cause.
• Lastly the most obvious and most common scenario is the patient with MSK symptoms, and a +ANA but no other criteria for lupus, should be considered as possibly having FM.

In practice, finding any one of the above should lead to a detailed tender point exam, a joint exam (to exclude synovitis/effusion) and a detailed sleep history.  If I diagnose FM as an alternative to their previous rheumatic diagnosis, patients may accept or refute FM as their diagnosis, or they may want an explanation for what their previous physician(s) said or did. 

Obviously, I cannot speak for the conversations, diagnoses, reports and issues that occurred before me and I can only take ownership of the evidence and findings that exist today.  Suffice it to say, a change in diagnosis is not always gleefully received.  I

find it helpful to use a patient handout on FM and explain the basis of why he/she has FM today and why "lupus" or "RA" is not an active problem today.