Topic: Medical Care
Patient Beware- Raising the Red Flags on the Fibromyalgia Diagnosis
In one document, “Fibromyalgia:a Distinct Entity or a Biopsychosocial Syndrome” http://www.ima.org.il/imaj/ar03dec-11.pdf features a debate by Israeli doctors as to whether or not Fibromyalgia is a separate medical entity or is a biopsychosocial disorder, Dr. Alan Rubinow of Hadassah University Hospital wrote:
Self-reported questionnaires have shown that affected individuals regard themselves as compulsive, perfectionist, over-achievers whose lifestyles render them unable to relax. Usually very dedicated, their personalities and objective life-event circumstances clash, resulting in a breakdown of normal adaptive stress-coping strategies. They lose their self-esteem and feel useless and exploited. What ensues is a never-ending cycle of poor sleep, widespread pain, frustration and unhappiness. To be unhappy is not an illness but a complex of interactions between the environment, the body and the mind that may cause significant functional impairment. The fibromyalgia condition probably depicts the psychobiology and somatization of stress and discontent. (“Fibromyalgia: A Distinct Entity?”, Alan Rubinow MD)
How exactly are these patient questionnaires worded? Are these multiple choice questionnaires and if so, which of types of descriptive word choices do these patients have to choose from? Are the word choices predominately of the loaded variety which tend to skew toward the negative or dysfunctional side; or are the choices broken down equally among positive, negative, and neutral descriptive words and phrases?
Or are all of these patients really choosing words like compulsive, perfectionist, over-achiever, useless, exploited, and unable to relax completely out of thin air to describe themselves?
Of all the patients who have been diagnosed with fibromyalgia, how many of them, percentage-wise, have actually completed this type of self-reporting questionnaire? And of these patients who have filled out the questionnaires, what percentage of them are actually using the words and phrases reported above to describe themselves, and what are the typical socioeconomic/educational level demographics of such patients?
This lengthy report, “Fibromyalgia” by Dr. John Buckner Winfield, on eMedicine.com (http://emedicine.medscape.com/article/329838-overview) is written for healthcare professionals, not patients and/or their loved ones; but this article, which reveals some of the current modes of thinking regarding how fibromyalgia patients should be viewed and treated medically and psychosocially based upon the stereotypical psychosocial model of 'the typical fibromyalgia patient' makes for interesting, and rather disturbing reading.
Selected quotes from “Fibromyalgia” (Note: numeric hyperlinks have been stripped from quoted text):
The prevailing paradigm for the development of fibromyalgia involves (1) certain vulnerability elements (female sex, genes, abuse or other adverse experiences during childhood when the brain is still developing) and (2) persistent stress or distress. Psychologic variables (eg, distress, mood and anxiety disorders, personality traits and disorders, catastrophizing, coping, self-efficacy for pain control) play a central role in the pain experience, overall morbidity, and prognosis in patients with fibromyalgia...
While not significant in all patients with fibromyalgia, cognitive-behavioral variables can be pivotal in the development and maintenance of persistent pain and functional disability. The repertoire of operant cognitive-behavioral variables in adults have antecedents in earlier life (eg, childhood abuse, parental alcoholism, learned behaviors from living as children with dysfunctional or chronically ill parents). By early adulthood, a failure in goal-oriented behavior may develop, leading to lower self-efficacy, the inability to achieve goals, and a fear of failure. In turn, this may presage reporting of chronic pain as a socially acceptable excuse for failure to achieve goals in later life....
Qualitative research shows that some patients with fibromyalgia exhibit meaning structures that facilitate their "invisible," "capricious" illness for which they cannot be blamed. Unwittingly, this may serve as an excuse for not meeting the demands and challenges of life, with accompanying strong rejection of any notion that fibromyalgia could have psychologic antecedents. When this occurs, physicians and/or counselors should assist the patient in avoiding to choose illness as a way to deal with difficult personal-life situations....
Certain data support a hypervigilance model of pain in patients with fibromyalgia. Heightened sensitivity to pain is due, at least in part, to increased attention to external stimuli and a preoccupation with pain sensations. Here, pain is amplified by hypervigilance to pain. Patients with fibromyalgia may become what they perceive themselves to be....
Lifetime psychiatric comorbidity is common in individuals with fibromyalgia, including mood disorders (bipolar disorder, major depressive disorder), anxiety disorders (generalized anxiety disorder, obsessive-compulsive disorder, panic disorder, PTSD, social phobia), eating disorders, and substance use disorders....
Several personality styles among patients with fibromyalgia are encountered...Most common is a perfectionism-compulsiveness personality, characterized by a rigid belief system in the need to be perfect, high underlying anxiety....Another common personality style is the self-sacrificing type, characterized by a tendency to put everyone else’s needs before their own. Less common is the "wounded warrior" type, who may be totally helpless and disabled physically and psychologically....The "resilient" patient who lacks maladaptive schemas and psychiatric comorbidity has a much better prognosis....
Pain behaviors can be important perpetuators of illness through reinforcement of the responses that patients with fibromyalgia induce as a means to get attention, to obtain medication, or to avoid work or activity. This can lead to limited physical and social activity, dependence on narcotics and alcohol, and unemployment...
Secondary gain becomes a major perpetuator of illness in people with fibromyalgia (FM) if injury at work or in minor motor vehicle accidents is inappropriately identified as a trigger of their illness. Well-meaning physicians, unaware of the biopsychosocial nature of fibromyalgia and current clinical and epidemiologic research data that, in the aggregate, fail to support trauma as a cause or trigger of fibromyalgia, unwittingly create legal imbroglios that adversely affect the patient's long-term prognosis....
The ACR criteria for classification of fibromyalgia have created a major pitfall with respect to diagnosis. These are classification criteria rather than diagnostic criteria and have not been validated in compensation settings. Pain at tender points is subject to manipulation by the patient. The ACR criteria have no place for diagnosis in clinical settings... (“Fibromyalgia”, John Buckner Winfield, MD)
Note: The ACR criteria Dr. Winfield is referring to is the American College of Rheumatology's trigger points test for clinically assessing fibromyalgia.
The Language of Fibromyalgia
As you can clearly see, a group of loaded psychosocial and personality/character trait terms and buzzwords frequently appear within the lexicon of fibromyalgia (and CFS) literature which effects how these patients are viewed, perceived and treated by the medical and social/psychological services communities. These buzzwords and phrases carry heavy psychological connotations which can actually alter how patients view and classify themselves and their lives both before and after they first fell ill, and can also alter how they view their world at-large.
Fibromites versus Normals is a good example of this on the patient social support level. People who are healthy and aren't suffering from fibromyalgia or other illnesses which are painful and life-altering are referred to as “normals” by some in the fibromyalgia community. And this term is frequently used in explanations to non-fibromyalgics about what it is like to live with the condition. It seems like a rather insulting and condescending distinction to make towards patients diagnosed with this condition.
Food for thought questions: If fibromyalgia patients aren't considered normal, what would that make them? Abnormals? With which other illnesses and medical conditions is it common practice for the patient community to make the distinction between themselves and those who don't suffer from their condition by classifying those who are healthy as “normals”? There are no diabetics versus normals, or COPD patients versus normals, or Parkinson's patients versus normals, or amputees versus normals distinctions.
The buzzwords and phrases commonly used within fibromyalgia (and CFS) medical and psychosocial support system literature which has transitioned to the level of patient self-description includes: maladaptive; Type A personality; people-pleaser; abuse victim; trauma victim; inadequate or having feelings of inadequacy; overachiever; overwhelmed; sensitive; seeking love, acceptance and approval from those incapable of giving it; overworked, overextended lifestyle; hyperactive; tends to place the interests and needs of others before their own; obsess; stressed-out; angry; depressed; anxious or anxiety; unable to say 'no' to people; bad or poor coping methods/skills/techniques. Wording and phrasing which indicates the long-suffering woman/wife/mother/people-pleaser stereotype may come to the fore with certain female patients. Some patients literally parrot what they read and hear about who they are said to be within their descriptions of themselves, their medical histories, and their lifestyles.
In the book “Fibromyalgia: The Complete Guide from Medical Experts and Patients” by Sharon Ostalecki (with chapter contributions from fibromyalgia medical and rehabilitative caregivers and patients); there are five chapters written by fibromyalgia patients- three female, two male- in which they discuss their personal experiences with their illnesses.
None of the patients who shared their stories comes across as being emotionally damaged goods individuals who were abused into submission and dysfunction since childhood and are using their illnesses as a crutch to avoid life. They are not malingering illness to get attention, or to get onto Disability because they don't feel like working. Nor are they substance abusers faking illness to have steady access to narcotic pain medications. It's actually quite the opposite- these are people doing their best to live their lives despite being chronically ill, but realistically realize their physical limitations. While each of their stories differ in their own unique way; most if not all of their stories/medical histories point to their illnesses generally being caused and perpetuated by bodily injury, other musculoskeletal defects and/or degenerative conditions, along with repeated exposures to bacterial and viral infections (some rather serious). The problem is these patients seem to have been coached somewhat (or at least influenced by the common buzzwords and phrasing that is brought into describing the 'fibromyalgic experience') when they wrote their chapters, as they too used some of those same loaded words and phrases.
"That's how overwhelming the pain and fatigue of fibromyalgia can become if it spirals out of control.” “The simplest decisions overwhelmed me.” “...I was always on the go.” “The pain never went away, and the emotional trauma was very difficult.” “I never got full relief of my symptoms and I started developing bad coping techniques.” “One of the most crucial elements of this healing process was recognizing the anger I had because I was sick. I felt that I had no control over my life and that my body had betrayed me.” “I learned that I put way too much stress on myself.” “...I would obsess over not having vacuumed or dwell on the thought that going out to dinner and dancing with friends was too much and life was so unfair.” “Learning to ask for help and learning to say “no” can dramatically increase your enjoyment of life!” “But now I have the skills to cope.” -Quotes from one female patient's story (Chapter 2)
"If his family and friends don't believe in it-if his doctors don't believe in it-a guy who has it is weak. He's lazy....He's wimpy, a whiner.” “The doubts, the fears, and the pains start an emotional and physical downward spiral, and the further down a guy spirals, the more maladaptive he becomes in handling this demon called fibromyalgia.” “...I lived with the pain through regular treatments with injections, ice, heat, exercise, and the impossible task of making my A++ personality rest.” -Quotes from one male patient's story (Chapter 14)
"Equally important, he taught me ways to say “No”. All my life, I've tried to do everything for everyone all the time. It has been hard for me to accept that I can no longer do that, and it's been hard for others to understand. I see this wonderful psychologist regularly.” -Quote from another female patient (Chapter 23)
Considering the current popularity among some physicians to diagnose “fibromyalgia” for any illness that involves pain and fatigue, just how knowledgeable and aware is the average patient is who newly diagnosed with fibromyalgia regarding the complete psychosocial picture of this illness and it's so-called 'average sufferer'? How many of these patients are truly aware of the implications of being diagnosed with an illness which can brand them as suffering from the psychosocially dysfunctional fibromyalgia personality?
What are the implications and consequences of being labeled with an illness that can brand the patient as likely suffering long-lasting emotional trauma due to physical and/or sexual abuse during childhood, and as likely suffering from one or more psychiatric/personality disorders due to a dysfunctional upbringing, especially when this doesn't reflect the patient's true family/social/psychological/medical history at all?
What are the consequences of being diagnosed with an illness label which in the minds of some in the medical and social/psychological support communities is viewed as potentially being a psychosomatic Münchhausen-type personality disorder where patients malinger illness and disability for attention-seeking? Or for drug-seeking to support a substance abuse problem? Or they are perceived to be faking a 'nebulous' illness in order to get onto Disability because they don't feel like working anymore?
When fibromyalgia patients start latching on to and using the psychosocial buzzwords and phrases to describe themselves- terms which tend to skew towards the negative and dysfunctional- are they aware of the potential implications for using these terms self-descriptively?
