Tuesday, 12 Nov 2019

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The Ill-Conceived Diagnosis of Fibromyalgia

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.

 

Disclosures: 
The author has no conflicts of interest to disclose related to this subject
Dr. Cush is the Director of Clinical Rheumatology at the Baylor Research Institute and a Professor of Medicine and Rheumatology at Baylor University Medical Center in Dallas, TX. He a Professor of Clinical Medicine at the University of Texas Southwestern Medical School.
 
Dr. Cush is the Executive Editor of RheumNow.com and also Co-Edits the online textbook RheumaKnowledgy.com. 
 
Dr. Cush's research and interests include novel drug development, rheumatoid arthritis, spondyloarthritis, drug safety, pregnancy and Still's disease/autoinflammatory syndromes. He has published over 140 articles and 2 books in rheumatology.
He can be followed on twitter: @RheumNow.

Rheumatologists' Comments

Excellent compilation of clues. Sjogren's might also make the list of concomitant diagnoses. I know several rheumatologists who refuse or resist to make this diagnosis, FMS that is. I think their rationale is that it can make you overlook treatable degenerative or soft tissue problems. So, I try not to do that.
Agreed! The textbooks say that up to 50% of Sjogrens pts have FM - in my experience its closer to 90%! To not make a diagnosis of FM is one way to avoid seeing FM (you dont know what you dont know AND you cant treat what you dont see). However, most rheums know better. The issue is whether you choose to manage them chronically. My office has a "Catch & Release" approach - we diagnose them, see them once and return to their primary MD, sleep medicine MD or pain clinic if they have primary fibromyalgia.
Hilarious, accurate, and excellent! I have found that when the patient says he/she has a high tolerance for pain it is another clue to the diagnosis. It is also interesting to note that the complaint of "I hurt everywhere" is frequently very vague when the patient is asked to pinpoint specific locations of discomfort. It is a relief of my own pain caring and diagnosing FMS patients to hear and read your comments that are very true and familiar in my 30 years of rheumatology.
We have a compliation of pain reports from FM patients, including - "my pain is a 20" (on 1-10 scale), "hurts when my husband breathes on me" and it feels like a "total body toothache". Hence your comments ring true. Thanks!
Having been in rheumatology for 30+ years, I fully agree with you and have shared your observations. May I ask what your evidence-based management recommendations are? I find that there are some who refuse EBM management and ask for CAM treatment, eg, marijuana.
For those looking for my approach to FM you can find it here http://buff.ly/1k5A5Vh Also there is a link to the FM patient handout at the bottom of the article. You will need to register to download these - its worth it! Plus you will be doing me a favor, Thanks!
That's because of where you practice, Stan! In the Brave New World of MIPS and quality measures, patients who refuse to follow evidence-based approaches become a liability to your practice. Along the West Coast, people do not need either your prescription or your permission to employ the complimentary method of medicinal "mother nature," so following Jack's more scientific approach is a good policy. Hope you continue to do well, in spite of the non-traditional requests from patients!
Enjoyed the article. One other physical finding I find helpful is significant complaint of pain when taking BP with BP cuff (sphygmomanometer-induced allodynia). This test has been studied and has 0.70 sens, 0.96 spec for FM (J Clin Rheum 12:272,2006.
This is an excellent read. I have shared this article with our residents and colleagues as well. I do have one question. What are your thoughts on the FM/a test? Looks like there are some data on its potential use. http://link.springer.com/article/10.1007/s00296-014-3172-2 https://thefibromyalgiatest.com/
Thanks for the kind comment. I dont endorse this test or this research. There should be no confusing lupus (go thru the criteria) and FM. Cytokine abnormalities are common with lupus and not operative in FM. Both should be a clinical, rather than lab, diagnosis. JJC
I would like to get a copy of your patient handouts please. I can't get the link to work. I know you posted this a year ago but it appeared on facebook this past weekend.