md-dont-perpetuate-the-stigma

Dr. N is a physician, psychiatrist, and avid reader of the comic. He is a geek at heart, a skeptic at brain, and has provided expert consultation on many an occasion.

Over the past year, the range of my reactions to Sci-ence has gone from “Wow, that’s a neat comic strip.” to “These guys are F’in’ passionate, I need to buy a Sci-ence onesie for my baby!”

The recent discussions on this site have been about treatment options of the ‘woo’ variety.  What about so called illnesses that have been legitimized by biased academicians and financially hyper inflated by pharmaceutical companies? The list is no doubt ‘controversial’ but only so if you do not understand the science, don’t know how to critically read a journal article, or are blinded by your conflicting interests.

It has come to a point where we pretend we are comfortable talking about our mental illnesses on the news, in autobiographies, and in movies, but the subtext is that we simultaneously continue to be deeply disturbed by them.  By creating ‘medical’ terms for existing ailments, we are complicit in the perpetuation of the stigma of having a mental illness such as depression or anxiety. This is reinforced by those with primary and secondary gains from the newly coined (pun intended) illness.

Each specialty in medicine has a functional somatic illness or two that continue to reinforce the stigma of having a mental illness. Rheumatology has Fibromyalgia, Infectious disease has Chronic fatigue syndrome, Gastroenterology has Irritable bowel syndrome, Neurology has Chronic headaches, Cardiology has Noncardiac chest pain, Urology has irritable bladder syndrome, Gynecology has Vulvodynia and chronic pelvic pain, Allergy specialists have Multiple chemical sensitivity, Oral surgeons have Temporomandibular joint syndrome, Physical medicine has Myofascial pain syndrome1.

Most of these complaints have overlapping clusters of symptoms and the primary treatment modality is similar: supportive care including talk therapy such as cognitive behavioral therapy, and medication management, primarily antidepressants.

In 1985, a rheumatologist named Dr. Don L. Goldenberg co-wrote an article2 about fibromyalgia stating “the results suggest that fibromyalgia may be related to major affective disorder.” Before this, he was writing about things like ‘post infectious arthritis’ and ‘internal medicine residents career paths.’

He wrote a couple more articles about gout and the ‘evaluation of rheumatology education in medical schools,’ but then in 1987 was the sole author of an article about fibromyalgia3 as an ‘emerging but controversial condition.’ This was the tip of the golden [ice] berg. He then went on to several decades of an academic career publishing close to 100 articles and a couple books about fibromyalgia.

Good for him. ‘Publish or perish’ and ‘you gotta feed the belly!’ are mottos that work hand in hand – I understand the idea of needing to pay the bills. I picked this MD because his name is all over the literature, but I don’t know him, and I have nothing against him in particular. He looks like a nice guy, and an editorial that he wrote in 20041 makes him sound like a really nice guy too, like he genuinely believes in what he is writing about. My issue isn’t with him, or pharmaceutical companies per se, or that rheumatologists or other specialists are taking patients away from psychiatrists either.

My concern is that we must be responsible and understand why we are doing what we do, and why we say what we say.

Fibromyalgia is characterized by widespread musculoskeletal pain and fatigue, cognitive and mood disturbances4.  The American College of Rheumatology (ACR) criteria for fibromyalgia in 1990 was: symptoms of widespread pain above and below the waist, and affecting both right and left sides of the body, and physical findings of at least 11 of 18 tender points.  These tender points are areas of ‘heightened pain perception,’ rather than inflammation or pathology, and many guidelines state that an exact number isn’t necessary to diagnose the illness. In fact, sometimes the ‘tender points’ criteria isn’t elicited by physical exam for the diagnosis at all!5.

In 2010, the ACR updated their criteria to widespread pain index (WPI) greater than or equal to 7, and symptom severity (SS) scale greater than or equal to 5 or WPI 3-6 and SS greater than or equal to 9. The symptoms have been present at a similar level for at least 3 months, and the patient does not have a disorder that would otherwise explain the pain.  The ‘tender points’ now are 19 and are: neck, jaw left and right sides, shoulder girdle left and right, upper arm left and right, lower arm left and right, chest, abdomen, upper and lower back both left and right sides, hip left and right, upper and lower leg both left and right. The WPI is ascertained by asking in which of these areas the patient had pain over the last week, and the score is between a 0 and 19. The SS scale is to indicate the level of severity of ‘fatigue,’ ‘waking unrefreshed’ and ‘cognitive symptoms’ over the past week on a scale of 0-3 (0 being no problem, 3 being severe, pervasive, life disturbing problems). The somatic symptoms are then specified as 0 for ‘no symptoms’ to 3 ‘a great deal of symptoms.’ The final SS score is between 0 and 12.

The new criteria allow for a patient to diagnose themselves, as a physical exam is not required. This is very convenient for the inexperienced clinician as well as for those with much to gain from getting or giving a medical diagnosis.

The diagnostic criteria created for this illness has made it such that fibromyalgia is now the most common cause of generalized pain in women between ages of 20 and 55 years, and is prevalent in 2% of the population worldwide.  There is no laboratory, radiographic or pathologic finding for the illness – everything comes back as normal. The controversy of the illness is scattered in the literature, and the justification for the diagnosis is published as evidenced by the fact that people like having a diagnosis for all their complaints, and get better after diagnosis, and there is a savings in health care costs! (1) and (6).

Treatment of fibromyalgia includes patient education and talk therapy such as cognitive behavioral therapy7. Antidepressants have been the main form of medication management for fibromyalgia. 2008 and 2009 were great years for the companies that own duloxetine, milnacipran – antidepressants that received FDA approval for fibromyalgia. The amount of money generated for this diagnosis, and from the commercials that ask “where does depression hurt?”  is mind – stundling.

Seth Meyers and Amy Poehler had a great segment on Saturday Night Live during their Weekend Updates, called “Really!?! With Set and Amy.” They would present a headline from the news, and ask the viewers “Really!?!”  when something was so obviously corrupt, rhetorical, misguided, or outright false. I feel like saying “Really!?!” when I think about the fact that the prevalence, diagnosis, and treatment and response to treatment of fibromyalgia overlap with those for depression!  Couple that with the findings that approximately 70% of patients with fibromyalgia meet the criteria for Chronic Fatigue Syndrome8 – Really!?!

If we are able to feel comfortable with our issues, and understand what we are doing, and to what end, and are honest with ourselves, things will be simpler. There will be a reduction in adverse effects from psychological stigma of having a problem, and from looking for alternative treatments like acupuncture.

 

 

  1. Goldenberg DL. Fibromyalgia: to diagnose or not. Is that still the question? J Rheumatol 2004; 31; 633-635.
  2. Hudson JI, Hudson MS, Pliner LF, Goldenberg DL, Pope HG Jr. Fibromyalgia and major affective disorder: a controlled phenomenology and family history study.  Am J Psychiatry; 1985 Apr:142 (4):441-6.
  1. Goldenberg DL. Fibromyalgia syndrome. An emerging but controversial condition. JAMA 1987; 257;2782.
  2. Bennett RM. Clinical manifestations and diagnosis of fibromyalgia. Rhem Dis Clin North Am 2009; 35:215.
  3. Shleyfer E, Jotkowitz A, Karmon A, et al. Accuracy of the diagnosis of fibromyalgia by family physicians: is the pendulum shifting? J Rheumatol 2009; 36:170.
  4. Hughes G, Martinez C, Myon E, et al. The impact of a diagnosis of fibromyalgia on health care resource use by primary care patients in the UK: an observational study based on clinical practice. Arthritis Rheum 2006; 54:177.
  5. Hassett AL, Gevirtz RN. Nonpharmacologic treatment of fibromyalgia: patient education, cognitive behavioral therapy, relaxation techniques, and complementary and alternative medicine. Rheum Dis Clin North Am 2009; 35:393.
  6. Aaron LA, Burke MM, Buchwald D. Overlapping conditions among patients with chronic fatigue syndrome, fibromyalgia, and Temporomandibular syndrome. Arch Intern Med 2000; 160:221.

 

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