Beware the Fibromyalgia Diagnosis Part Twelve
Topic: Medical Care

From: “A Look at Questions Surrounding Fibromyalgia”:

MIND OVER MATTER? Patients diagnosed with fibromyalgia are more likely to have a history of mental illness, be overweight and economically disadvantaged. Some doctors say their suffering may stem from difficult circumstances rather than disease. http://abcnews.go.com/Business/wirestory?id=6831204

Quote from “Primary Care for Women”, Second Edition by Jeffrey F. Peipert:

Factors associated with fibromyalgia in the general population include female sex, divorce, failure to complete high school, low household income, decreased pain threshold, subjective joint swelling, parenthesis, irritable bowel syndrome, moderate or sever impairment demonstrated by the health assessment questionnaire, increased pain, fair or poor self-reported health status, and moderate dissatisfaction with health. (pp. 590-591)

 

From “A Review of Fibromyalgia” by Devi E. Nampiaparampil, MD; and Robert H. Shmerling, MD:

Disability secondary to chronic pain appears to result from a combination of patients’ past experiences, self-esteem, motivation, psychological distress, fatigue, ethnocultural background, education, income, and potential financial compensation... Disability in chronic pain does not appear to be related to the severity of the pain. (pp798-799 The American Journal of Managed Care November 2004 ) http://www.hcplive.com/_micro/ajmc/_picture/folder_12/AJMCnovNampiaparampil794.pdf.

Some Sociological/Sociodemographic Questions:

What is the average household income for someone who has been diagnosed with fibromyalgia? How many or how few people with household incomes over $100,000 are diagnosed with this condition? How many have incomes over $60,000? Are lower income people- the working poor and the public assistance-dependent more likely to be given this diagnosis? What about health insurance coverage and policies? Is it a case of: “the better health insurance coverage you have, the less likely you'll be diagnosed with fibromyalgia?” Are the underinsured more likely to be told they have fibromyalgia versus those with more comprehensive health coverage? Are uninsured clinic patients, those reliant on Medicaid or Charity Care, given this diagnosis at much higher rates then those with health insurance coverage? What about education levels and fields of employment, or lack thereof? Are high school drop-outs and those with just a high school diploma more likely to be diagnosed with fibromyalgia than someone with multiple or advanced college degrees? Are people who work in low-income jobs, the unemployed, and housewives more likely to be diagnosed with fibromyalgia than people with higher paying white collar jobs, financially successful business owners, or people who have good civilian jobs working for State Government, or the Federal government?

If a doctor thinks a patient is stupid, or whiny or flaky or neurotic or a pest does that make her a more likely candidate for receiving the fibromyalgia diagnosis? Are patients judged by their appearance? Are patients who appears to be lesser educated and lower income through their mannerisms, speech, and physical appearance (such as the quality of clothing and accessories they wear) more likely to be viewed with less credibility and have their symptoms taken less seriously versus patients who comes across as better educated and more affluent? Can such distinctions lead some doctors to casually slap the Fibromyalgia diagnosis label on patients from lower educational and financially modest backgrounds? Is a female patient who is either shy, timid and hesitant to speak; or who comes across as nervous, anxious, and easily excitable; or who uses a lot of emotion-laden words to describe her physical symptoms more likely to have her ailments diagnosed as fibromyalgia than a female patient who comes across as calm, cool, and collected? Are women who are overweight more likely to be hastily given the fibromyalgia diagnosis versus women who aren't overweight?

If a doctor knows the patient has, or did at one time suffer from depression or anxiety, does this increase the likelihood the patient will be automatically told her (or his) symptoms are caused by fibromyalgia, with little or no diagnostic testing done to rule out other medical conditions with similar symptoms? Does the same hold true if the patient responds with a “yes” when questioned about whether or not she was ever in a car accident, or ever had surgery, or was abused as child, or had beaten by a boyfriend or husband, or if she was ever raped, or if her parents ever consumed alcohol during her childhood, or if she smokes, drinks or had ever used illegal drugs?

From “Bone health in patients with fibromyalgia” by A. W. Al-Allaf, P. A. Mole, C. R. Paterson and T. Pullar1:

Patients with FMS were more likely to be smokers compared with controls (52.5 and 18.9% respectively,P¼0.006). Patients were found to have a higher BMI compared with controls (28.9 and 25.8 respectively, P¼0.016). FMS patients were found to be more likely to have had previous steroid therapy compared with controls (42.5 and 8.1% respectively, P¼0.001). However, FMS patients were significantly less likely to take alcohol on a regular basis (27.5 and 78.4% respectively, P<0.001). www.fibromynet.nl/pdf/voedingssupplementen-vitamined.pdf

 

From Rx AlterativeMedicine.com “Fibromyalgia Syndrome, Chronic Fatigue Immunodeficiency Syndrome FMS”:

The causal factors that most frequently contribute to FMS/CFIDS are addressed in an online Comprehensive Health Assessment found on the link listed below. The assessment, all easily accomplished from the convenience of your computer, will give you good insight into whether you are experiencing any of the common causes of FMS/CFIDS. Those factors include:

Candidiasis , a common yeast problem frequently associated with FMS/CFS.

Food allergy is usually associated with Candidiasis and undetected in most cases, especially the delayed onset type.

Gastrointestinal disorders including the "leaky gut" and microbial parasites, among others, are often a factor.

Toxic metals including lead, mercury, cadmium and aluminum are unsuspected culprits and should be considered in persons who have been exposed to them.

Hormonal imbalances including thyroid, adrenal and progesterone insufficiencies as well as others may be a problem.

Poor diet, junk food, smoking, obesity, and alcohol should always be considered.

In our clinic, every FMS/CFS patient completes the Comprehensive Health Assessment mentioned above. We consider it to be a required part of every patient's program. It is very easy to complete in spite of being extensive and global in its evaluation of your potential for these FMS/CFIDS causal factors. It is done at your convenience and time table, all online.

The Contributing Factors to Fibromyalgia and Chronic Fatigue Syndrome

As you have read above, FMS/CFIDS are caused by a variety of different conditions which on the surface would seem to be unrelated to fibromyalgia. There is a tremendous amount of literature available on FMS/CFIDS and your challenge is to sort through it all to see what applies to you. http://www.rxalternativemedicine.com/articles/fibromyalgia.html

 

Quote from the abstract for Characteristics of patients with fibromyalgia syndrome assisted in a hospital of Salvador, BA, Brazil. COSTA, Sergio Ricardo Matos Rodrigues da et al.:

We found a significant association of low family income, sleeping disturbances and smoking habit with a larger amount of tender points. http://www.scielo.br/scielo.php?pid=S0482-50042005000200004&script=sci_abstract

 

Quote from the abstract “Quality of life, functional disability and lifestyle among subgroups of fibromyalgia patients : The significance of anxiety and depression”:

Anxiety and depression interacted to yield relatively high consumption of coffee and cigarettes among the anxious and depressed subgroup, and this effect emerged only after the elimination of confounding effects of age and duration of the fibromyalgia disease.

http://cat.inist.fr/?aModele=afficheN&cpsidt=1216145

 

Has Fibromyalgia become a diagnostic label which is largely based upon behavioral stereotypes both here in the United States and abroad?

The Double-Edged Sword of Alcohol Use

Some doctors ask their fibromyalgia patients about their personal backgrounds and childhood and this can potentially include the loaded question: “Did your parents drink when you were a child?” Alcohol use has different connotations when related to socioeconomic factors, race and ethnicity. Obviously both non-abuse related alcohol consumption and alcoholism exists across the socioeconomic spectrum, and in all racial and ethnic groups. But, when it comes to social class, social standing, education, career and income, race and ethnicity there are societal-based stereotypes which can effect how a “yes” answer to the above question will be perceived.

In our society, for middle and upper income adults, (particularly for white middle and upper income adults) with higher levels of education and well paying white collar jobs, alcohol consumption, especially in social or romantic settings, bears far less of a negative perception. Drinking quality wines with meals; or choosing champaign for special occasions; drinking liqueurs, mixed drinks and microbrewery beers; being knowledgeable about wine; attending wine tastings; going on 'wine country tours' and the like is considered sophisticated and chic. But when it comes to societal perceptions regarding alcohol consumption, even just occasional consumption in social settings, by lower-income workers, and the poor, by anyone who has recently developed a chronic health problem, as well as by members of racial and ethnic minority groups, negative societal stereotyping can come into play.

If a white, middle class or wealthy patient is asked whether or not her parents consumed alcohol during her childhood, and she answers “yes”, the likelihood her questioner may or will automatically assume the alcohol consumption equated with alcoholism and domestic violence can differ somewhat than if that question is posed to a low-income white, or low or middle income black, Hispanic or American Indian patient. The same socioeconomic and racial/ethnic based stereotypes may very well influence how the medical or social support caregiver views the patient if the patient answered “yes” when asked if she or he ever consumes alcohol. With efforts being made to blame many medical problems on “bad personal behaviors” like consuming alcohol, even when that behavior have nothing to do with the development of the patient's medical condition, negative and erroneous assumptions can still be made about any patient who isn't a teetotaler. With efforts made to blame various illnesses and diseases in adults, including musculoskeletal and autoimmune diseases on childhood domestic abuse at the hands of parents and other caregivers, the question of “Did your parents drink when you were a child” becomes a loaded question particularly in light of societal biases and stereotypes against lower income whites and those from racial and ethnic minority group, and this factor needs to be considered.

Can a lower income/poor white, or non-white patient with minimal or no health insurance coverage who presents with chronic fatigue and pain, who answers “yes” to parental alcohol consumption have that “yes” used in part by her medical caregiver to reach a hasty diagnosis of fibromyalgia, based upon the stereotypes, biases and perceptions that exist in our society?

Is Fibromyalgia Partly a Socioeconomic and Social Stereotype Based Diagnosis?

A wide variety illnesses, diseases and medical conditions have symptoms that are similar to fibromyalgia, yet Fibromyalgia is currently a popular “fad” diagnosis for all that ails many people, particularly women; so what roles do socioeconomics, medical care coverage or lack thereof, and social class, gender, racial and ethnic stereotypes play within the medical community which effects physician diagnostic decision making? How do these factors help determine which patients will quickly receive the Fibromyalgia label with little or no medical testing to rule out other conditions, and which patients' doctors will look elsewhere for an answer through thorough diagnostic testing?

On average, how many medical tests are run on a patient with good to excellent health insurance coverage before her doctor even considers the fibromyalgia diagnosis? How many medical tests are run on an underinsured or uninsured patient before her doctor ever considers the fibromyalgia diagnosis?

It would be interesting to see studies run by Sociologists (academic Sociologists, not social workers) which strictly focused on socioeconomic and educational backgrounds, racial and ethnic factors, and levels of health insurance coverage or non-coverage regarding who is more likely to receive the Fibromyalgia diagnosis, particularly in situations where either few or no laboratory or hospital-based medical tests are performed to first rule out other medical conditions with similar symptoms.

It would also be interesting to read some Criminolgists' opinions on linking Fibromyalgia and CFS to child beating and child molestation, as an emotional symptom of suffering physical or sexual abuse. Have those criminologists who've interviewed the offspring of violent criminals (whose victims included family members) ever noticed any tendencies in these offspring to suffer from fibromyalgic and chronic fatigue-like medical problems?

Fibromyalgia and Gender, Race , Ethnicity and Occupation

From the “Fibromyalgia Pain in African Americans” webapge:

An estimated three to six million people suffer from fibromaylgia in the United States...African-American women account for a good portion of those diagnosed. Studies have shown that African-American women with fibromyalgia suffer more widespread severe pain than Caucasian women.. Treatment for fibromyalgia pain has varied for African-Americans.. A study published in 2003 discussed the lack of referrals for specialized pain management for African-Americans.

Fast Facts:

• A study revealed that African-Americans have a higher severity of chronic pain and an increased sensitivity to pain..

• Until recently, there were few studies on African-Americans and fibromyalgia..

• Trials are being conducted to study fibromyalgia pain in African-Americans. http://organizedwisdom.com/Fibromyalgia_Pain_in_African_Americans

Excerpts from “Patients of Color” by Sabrina Dudley Johnson:

Why is it important to discuss race and fibromyalgia?

Many minority fibromyalgia patients have recounted incidents with physicians who believed, “Since there are no minorities discussed in fibromyalgia research, they must not have it.”

Members of FACES (Fibromyalgia Association Created for Education and Self-help), including African American, Latina, and white people, males and females, civilians and law enforcement officers, drove three hours to a seminar. During the Q&A session, one member asked, "When are researchers going to do studies on people of color, and police officers with fibromyalgia?" The researcher replied "Never! They don't exist!"..

Marcellus Walker, MD, and Kenneth Singleton, MD, address race and healthcare, stating: “In the current climate of ‘political correctness,’ many people consider it inappropriate to separate people on the basis of race, but, when it comes to health, race really does matter. African Americans . . . will soon experience an epidemic of cancer, fibromyalgia, chronic fatigue, and other degenerative diseases.”..

A University of Alabama study revealed that African Americans have a higher severity of chronic pain, an increased sensitivity to pain, and a lower pain tolerance threshold than their white counterparts. The study went on to relate that coping styles, cultural responses to stress, and biases towards/from healthcare providers may be contributing factors.

Patrick*; an African American law enforcement officer with fibromyalgia, was given a referral for massage therapy. The physician called the therapist and asked if she had an opening for a male patient. She replied yes. The officer was ushered into a treatment room. The therapist entered and, upon seeing her new patient, ran from the room. "He didn't tell me you were black!" she snapped...

FACES was founded by people of color and public safety workers with fibromyalgia. We wanted to ensure that the diversity of people affected by this condition receive equal recognition in research and awareness projects. We also realize that the special issues of pain management disparities and cultural competency must be addressed on multiple fronts. Therefore, FACES concentrates on partnerships with other fibromyalgia organizations, government agencies, members of academia, disability organizations, members of law enforcement, and various community-based organizations... http://www.fmaware.org/site/News2?page=NewsArticle&id=6282

Unfortunately FACES was forced to shut down because its founder Sabrina Dudley Johnson has been struggling with worsening health issues. You can read more about Sabrina Johnson and FACES here: http://fmsglobalnews.wordpress.com/2008/01/06/the-demise-of-fibromyalgia%E2%80%99s-faces-inc/

Beyond medical discriminatory issues faced by members of racial and ethnic minority groups; when it comes to the fibromyalgia diagnosis, the fact that men too are diagnosed with fibromyalgia is often ignored in favor of painting it as a “woman's illness”. Also occupation seems to play a role for some patients. First responders of both genders- police, firefighters and EMTs- along with members of the healthcare profession- nurses, and even some doctors- are being diagnosed with fibromyalgia and CFS. Musculoskeletal and autoimmune illnesses are on the rise among first responders in general. First responders and healthcare providers come into contact with a lot of people as part of their profession- a lot of injured and ill people- so they are frequently exposed to various bacteria and viruses. Also with first responders, particularly firefighters, they are exposed to hazardous materials, toxic fumes/toxic smoke and such as part of their everyday jobs. But, unfortunately “job stress” has become the convenient medical excuse for the rise in such illnesses in healthcare workers and first responders. Several doctors who are involved with Fibromyalgia and CFS research and advocacy suffer from these conditions themselves. They are: Drs. Mark Pellegrino, Daniel Dantini, and Devin Starlanyl.

Beware the Fibromyalgia Diagnosis Part Eleven
Topic: Medical Care

Fibromyalgia and CFS As Psychosomatic Trauma Illnesses- Part Four:

Questioning This Flawed Premise- Part Two

The Role of Gender Differences in the Use of Language

Somatoform/Biopsychosocial researchers and other so-called Fibromyalgia experts often push the concepts of the Fibromyalgic personality: suffering from low self-esteemed based people-pleasing and being the typical Type A workaholic overachiever who doesn't know how or when to rest and relax.

When it comes to people pleasing, and burning the candle at both ends, women are viewed in our society as nurturers and care-takers, and many are struggling to balance work and family responsibilities. Feeling burned out, overworked and under-appreciated by both their employers and family members is not a new concept, and these sentiments are felt by members of both sexes. This concept really has nothing to do with whether or not someone has been diagnosed with either fibromyalgia, or CFS, or has been abused as a child. Employees are working harder, for longer hours each week than in decades past, and many aren't receiving the salaries they deserve for all their efforts. Higher levels of education, job training, and frequent educational/career skill updating is required in various career fields. Two-income households are often a necessity in order for families to make ends meet. Beyond that are the additional responsibilities of home and family, which may include raising children while also taking care of aging and ill relatives. But the medical language of Fibromyalgia (and CFS) has been completely enmeshed in psychotherapy-speak, and abuse and dysfunction concepts and buzzwords. These buzzwords and dysfunction concepts are most often pushed and touted by male medical researchers who are using these terms to analyze and psychologically profile female patients. Female fibromyalgia patients who use emotion-based words, who express feelings of under-appreciation or say they feel burned out by their work and family responsibilities are simply deemed as 'damaged' and 'dysfunctional'. It is a well known and well researched fact that gender differences exist between the way men and women use language. Some women simply tend to use more emotion-based words when speaking casually and informally than men. Any female patient who uses emotion-based expressive words to describe herself, her feelings and personal life can easily have these sentiments misconstrued by male somatoform/biopsychosocial researchers as indicating she suffers from low self-esteem and emotional dysfunction issues, and has been taken advantage of and is being beaten down emotionally by her loved ones.

Military Versus Civilian Life- An Awkward Comparison

From the article “Neurotherapy Treatment of Fibromyalgia Using EEG-Based Stimulation”:

Yudenfreunc-Sujka found that 90% of the Orlando VA Healthcare Center's female patients with chronic headaches and fibromyalgia have a sexual assault/abuse history.²² Patients presented with several diagnoses overlapping with the symptoms of fibromyalgia and post-traumatic stress disorder. "It is the author’s opinion that the sexual assault/abuse that the patients had been subjected to resulted in psychological problems that contributed to the development of headaches and muscle aches and pains which were then labeled fibromyalgia." He concludes that "...rape and any type of sexual assault can be a precipitating cause of post-traumatic stress disorder."²³ Highly charged emotional events create a chemical cascade in the CNS that leaves its imprint on functioning. What is not mentioned in most of this research is the effect of physical trauma on the central nervous system from blunt forces, or internal forces generated by acceleration/deceleration trauma. Many sexual abuse incidents involve head trauma as a result of accompanying physical assault. Highly charged emotional events create a chemical cascade in the CNS that leaves its imprint on functioning in addition to whatever physical trauma may have occurred during the abuse. http://www.fmpartnership.org/Files/Website2005/Learn%20About%20Fibromyalgia/Articles/Neurotherapy%20Treatment%20of%20Fibromyalgia.htm

One interesting point not made about the above statement regarding sexual abuse and trauma with these female patients is the significance that they are female veterans who are patients at a VA hospital which offers mental health services for veterans dealing with various issues including Military Sexual Trauma. Hence this is VA hospital, serving the veterans of central Florida, which offers counseling services for former military members who were raped while they were serving their country. News stories about the how the military often does a poor job when it comes to serving the needs of female soldiers, sailors and airman who were raped- both from the legal standpoint of prosecuting the rapist and the emotional standpoint of providing counseling services for the victim have made these deficiencies and flaws public knowledge to our society-at-large.

The Orlando VA Medical Center's Mental Health Program includes treatment for: Post Traumatic Stress Disorder, Alcohol and Drug Abuse, Traumatic Brain Injury, Military Sexual Trauma, and has a Domiciliary. http://www.orlando.va.gov/services/index.asp

A Domiciliary is an in-patient rehabilitation and treatment program which:

...Provides clinical care to patients who suffer from a wide range of problems, illnesses, or areas of dysfunction, which can be medical, psychiatric, vocational, educational, or social.

...Provides clinical care which emphasizes a positive therapeutic milieu, functional independence, and patient mutual support,specifically utilizing the Therapeutic Community model. As used here, this implies the use of the "community as method."The peer community is used in a conscious, purposeful manner to facilitate social, psychological, and behavioral change in individuals. Multiple therapeutic and rehabilitative activities are used, all being designed to produce therapeutic and educational changes, and all participants (patients and staff) are considered mediators of these changes.

...Provides care by Domiciliary interdisciplinary clinical teams which develop, integrate, and coordinate comprehensive and individualized plans of treatment, rehabilitation, or health maintenance which include all resources involved in the patient's care, both within and outside the Domiciliary.

...Offers the potential for treatment or rehabilitation of patients with relatively narrowly defined problems if the general definition of Domiciliary Rehabilitation and Treatment is met, in each instance attending to whether a different type of care or treatment program would be more appropriate.

http://www1.va.gov/domiciliary/

The female fibromyalgia patients from the Yudenfreunc-Sujka study belong to a rather unique subgroup. They are women with a military service history which may have lead to bodily injury or injuries which increased their vulnerability to developing chronic health problems, who were also unfortunate enough to become the victims of rape while serving their country. These female veterans' lives and personal experiences don't exactly correspond to the life-experiences of female civilians who've been diagnosed with fibromyalgia, so it's an awkward comparison.

Everybody Into the (Fibromyalgia Patient) Pool!

Quotes from the abstract for “Psychiatric Disorders and Functional Disability in Patients with Fibromyalgia”:

The objective of this study was to describe the prevalence of current psychiatricdisorders and functional disability among a sample of patients attending a fibromyalgia group clinic in the Rheumatology Department at Kaiser Permanente Colorado...

A sample of 184 patients, 92% of whom were women, were given questionnaires at the beginning of the group clinic. Questionnaires included items on demographics, work disability, and history of trauma and abuse. Also included were the following instruments: the Illness Intrusiveness Scale, the Fibromyalgia Impact Questionnaire, and the Quick Psychodiagnostics Panel...

Most patients reported a history of trauma (74.7%) or abuse (53.5%). Major depression (34.2%), anxiety (29.9%), and panic disorders (17.4%) were prevalent in this sample. Symptoms of bipolar disorder were present in 59.2% of patients. In addition, a high level of psychiatric comorbidity was evident: 64.1% of the patients met DSM-IV criteria for two or more diagnoses. These patients also reported clinically significant functional impairment (especially in thelife domains of active recreation, health, and work) and were most negatively affected by fatigue, lack of restfulness at waking, and stiffness.

This study seems like it's pretty straightforward, but is it really?

The study itself reads:

Most patients diagnosed with fibromyalgia by their primary care physician at Kaiser Permanente (KP) in Colorado are referred to a rheumatologist. Because of the volume of fibromyalgia patients seen there—fibromyalgia is the second most prevalent condition seen at the KP Colorado Rheumatology Department—and because of the difficulties in providing care to these patients within the traditionaloffice-visit model, the rheumatologists developed a fibromyalgia group clinic that was implemented in1998. The group clinic consists of one four-hour session that includes education about fibromyalgia and its diagnosis; behavioral guidelines for restorative sleep, relaxation, and exercise; and treatment such as medications and physical therapy. Because the course of the condition is greatly affected by the presence of psychiatric disorders and by the patient’s initial level of functional impairment, assessment of these two domains among patients attending the group clinic became a primary goal for the rheumatology providers

What exactly has been going on at Kaiser Permanent Hospital since the late 1990's which results in their primary care physicians diagnosing so many patients with fibromyalgia that it's become the second most prevalent rheumatological condition at that hospital, and the sheer volume of fibromyalgia patients requires a special clinic set-up to accommodate them all?

Their study sample uses 184 patients, but how many patients make up their entire Fibromyalgia patient pool?

We were particularly interested in screening for psychiatric disorders, because the rheumatology clinical staff expressed their belief (and the medical literature about fibromyalgia suggests) that psychiatric disorders are common among patients with fibromyalgia and greatly affect these patients’ ability to manage their condition and to achieve successful treatment outcomes.

Since this hospital and its staff already works under the assumption of a link between psychiatric disorders and fibromyalgia, does this mean any of these Kaiser Permanente patients who were labeled with Fibromyalgia to explain their medical ailments received the fibromyalgia diagnosis label because their physicians already knew they had some sort of mental health issues- anxiety disorders, depression or whatnot- so the fibromyalgia diagnosis became the 'easy answer' for these particular patients? Or, because of the assumption of a link between the two factors, are their fibromyalgia patients automatically viewed, assessed and labeled as suffering with mental health issues just because they have the fibromyalgia diagnosis, i.e.- does the fibromyalgia diagnosis “taint” these patients in any way?

Think this study was conducted fairly and honestly? Well, think again.

Study Subjects and Data Collection

The data for this study were obtained from a variety of validated self-report measures administered to 184 patients attending the fibromyalgia group clinic between November 1998 and August 1999. Patients had been referred to a rheumatologist by their primary care physician, who made the initial diagnosis of fibromyalgia; the rheumatologist scheduled the patient for the group clinic after confirming the diagnosis.

In other words, they carefully cherry-picked 184 patient self-reports taken from the entire pool of incoming clinic patients who were seen over a nine month period, which fit into their preconceived ideas regarding links between fibromyalgia and psychiatric problems. This was an intentionally loaded study which was conducted in such a way to“confirm” their hypothesis and personal viewpoints, and there is nothing 'random' or straightforward about how this study was conducted.

Another interesting thing to note is the inclusion of one patient's self-report, and the clinical assessment made regarding her answers and interview. The common symptoms of fibromyalgia this patient experienced, which included: dizziness, shortness of breath, heart palpitations, muscle tension, and sleep disturbances were clinically assessed as “Anxiety Symptoms”. Weight gain, insomnia, poor concentration, and fatigue- other common fibromyalgia symptoms- were placed under the “Depressive Symptoms” list. Hence the common symptoms of the condition itself are automatically classified as mental health issues. Listing the common symptoms of a particular medical condition as psychiatric in nature automatically categorizes and classifies its entire patient pool as 'mentally ill'.

The entire study can be downloaded here: http://xnet.kp.org/permanentejournal/sum00pj/fibro.pdf

A Question of Neuropsychiatric Lyme in Colorado

Kaiser Permanente Hospital had an unusually large pool of patients who have been diagnosed with Fibromyalgia, beginning back in the late 1990s. And their staff strongly believes in links between fibromyalgia and psychiatric disorders. Did any of these doctors ever think to evaluate their patients with chronic pain and fatigue, and psychological problems for Neuropsychiatric Lyme/Lyme Encephalopathy? There is a subset of Lyme patients for whom the physical symptoms take something of a back-seat because the Lyme Borrelia spirochetes attack the brain, resulting in encephalopathy- an inflammation of the brain and spinal cord. Lyme Encephalopathy can cause symptoms that mimic psychiatric illnesses, including: bi-polar disorder, obsessive compulsive disorder, anxiety disorders and depression. Neuropsychiatric Lyme is medicinally treated the same as Lyme in general- with antibiotics.

Medical researchers, doctors, nurses and psychosocial-support workers who claim that some/many/most of the fibromyalgia patients they deal with tend to have psychological problems may be in fact dealing with misdiagnosed patients who really belong to the Neuropsychiatric Lyme patient subgroup.

...Virginia Sherr, a psychiatrist from Holland, Pennsylvania, meanwhile, says the prevalence of tick-borne disease has transformed the face of her practice- and not because Lyme Disease patients sought her out. “I find that many patients walking in off the street are infected, but unaware,” Sherr states. “They don't know what has happened to cause their depression, confusion, obsession, anxiety, tendency to lose things, or other complaints.” When Sherr suspects Lyme or a coinfection, she has no compunction about sending blood out for laboratory tests. “When tick-borne disease is the cause, it's only with antibiotic therapy that psychiatric symptoms resolve.”

...“Doctors can destroy patients by telling them that a true, physical disease is all in the head,” Sherr says, “and suicide is a possible result.” In the hyperendemic area of Bucks County, she sees a new case of Lyme encephalopathy every week and, sometimes, almost every day. “I am a psychiatrist. These are not people who are referred to me because they have Lyme disease- they are sent because they have panic attacks, hallucinations, obsessive compulsive disorder, depression. They are in agony- not only neuropsychiatric pain, but physical pain as well. They have never been hypochondriacal in their lives, but that is how they have been labeled before they come to me. They are encephalopathic, but they have been told they are not by physicians who wouldn't know a case of encephalopathy if they fell over it.” (pp 152-153, “Cure Unknown: Inside The Lyme Epidemic” by Pamela Weintraub)

The “NEURO-COGNITIVE LYME DISEASE” webpage is filled with links to numerous educational and informative articles on Neuropsychiatric Lyme: http://www.lymeinfo.net/neuropsych.html

Beware the Fibromyalgia Diagnosis Part Ten
Topic: Medical Care

Fibromyalgia and CFS As Psychosomatic Trauma Illnesses- Part Three:

Questioning This Flawed Premise- Part One

Quote from the abstract for “Physical symptoms in sexually abused women: somatization or undetected injury?”by Sarah Nelson:

Medically unexplained physical symptoms and disorders in women sexually abused in childhood are widely interpreted as somatization-the expression of emotional pain and stress through bodily symptoms. However, the somatization theory is not based on detailed knowledge of the abusive incidents, and may underestimate the direct effects of violence and injury, repeated over years, to children's developing bodies.

http://www3.interscience.wiley.com/journal/91016052/abstract?CRETRY=1&SRETRY=0

Under the somatoform/biopsychosocial model- physical injuries which cause soft tissue damage, nerve damage, broken bones, etc. whether from domestic violence, automobile accidents, workplace related injuries or from do-it-yourself home maintenance/repair mishaps which involve falls from ladders, or roofs and such, etc., which result in permanent pain or injury have suddenly been reduced to the bodily injury not counting at all in favor “diagnosing” the patient with Post Traumatic Stress. The same holds true for physical damage caused by serious and persistent viral and bacterial infections, other environmental based health problems, autoimmune diseases, and genetically-based health conditions. Any so-called “trauma” or hardship one faces throughout the course of his or her lifetime can be scapegoated as a “stressor” which triggers illness. If the patient wasn't in a car accident and wasn't the victim of domestic violence or sexual assault; any difficulty, loss or hardship in life can be substituted, whether is was a job loss, a divorce, the death of a loved one, undergoing surgery, etc. The way this belief system is headed, soon the “childhood emotional traumas” people experienced such as having their pet hamster die when they were ten years old, or not making the cheerleading squad in ninth grade, or not belonging to a popular clique in high school, or not attending one's prom with her or his 'dream date' will be blamed for the illnesses they later develop in adulthood. The same may hold true with adults who will be labeled as “psychologically traumatized” because they didn't get that promotion they wanted at work, or because they couldn't afford to buy their pricey dream house, and instead had to choose a much more modest home which fell within an affordable price range; and these set-backs may be seen as the so-called 'emotional causes' behind their physical pain and permanent health problems following that serious car accident in which they nearly died, or if they develop cancer or an autoimmune disease.

It's typical for some (many?) patients diagnosed with fibromyalgia to have a medical history which can include a combination of bodily injuries from various sources, genetic-based health problems, multiple infections and sometimes other chronic progressive conditions such as rheumatoid arthritis. So there is this one of school of thought (of growing influence within our healthcare system) which places just about all the “blame” for illnesses, particularly ones which involve chronic pain and impose limitations on physical activity and stamina, on the patients themselves for having weak psyches and flawed, dysfunctional personalities due to being repeatedly beaten down emotionally by the people in their lives and by various life-events. This trauma-induced stress damages their HPA Axis (HPA- Hypothalamus, Pituitary and Adrenal glands) leading them to develop an “adrenal fatigue” type illness. Adrenal fatigue being yet another fad diagnostic buzzword which is related to people's bodies burning out via the HPA Axis due to the stresses of our fast-paced modern world. A subset within this school of thought blames these emotionally traumatized and family dysfunction-damaged patients for destroying their own health through the negative personal behaviors of smoking, alcohol abuse, using illegal drugs, eating a fatty food/junk food filled diet, and not exercising.

Stress and poor personal life choices are the current scapegoats for a growing number of diseases and other medical conditions. Forget about permanent bodily injuries, chronic and persistent bacterial and viral infections, and other harmful environmental agents, and of course there's genetics which can leave some people much more vulnerable to illness via their either lacking certain good protective genes or possessing other not-so-great genes which increase their chances of developing certain kinds of health problems- these factors have all become irrelevant. Equally irrelevant are the facts that many people who develop chronic illnesses don't come from abusive or dysfunctional families, don't smoke, don't drink in excess (or imbibe at all), don't use illegal drugs, and don't eat any less healthy or exercise any less than many other ordinary, average people who don't develop chronic health problems. On the other hand, there are plenty of people who come from abusive or dysfunctional backgrounds, and who make poor life choices who don't develop life-altering chronic health conditions.

Our healthcare system is run by managed care health insurance companies and the major pharmaceutical companies Over fifty million Americans lack health insurance coverage and that number continues to grow as jobs continue to be outsourced overseas, and our economy is now furthered weakened by a deep, global recession which is triggering even more job layoffs, on a daily basis. About an equal number of people are underinsured, and are carrying policies which cover only very rudimentary healthcare services. Some of the uninsured are relying on state Medicaid programs which are drastically underfunded, and it's the same story with state Charity Care programs. How convenient that there are these catch-all illness pigeonhole labels involving the HPA-Axis and so-called emotional-trauma related physical ailments to dump patients into with little or no diagnostic testing required, which is a real money saver for those insurers who are footing these patients' healthcare bills. Being able to blame the patients for their illnesses by claiming they must have been abused as children, or they were traumatized by some incident that happened to them sometime during their lives, along with negatively stereotyping them regarding their lifestyle choices is a money saver as well for cost-conscious insurers, and it also provides them with convenient 'excuses' for cutting back on the quality and duration of the medical care their patients can receive. And of course this means it's okay to cut back on certain types of medical research regarding the true biological, environmental, and genetic causes behind those diseases and health conditions which are on the rise, as “stress”, “psychological trauma” and “bad personal behaviors” have become the cheap and easy answers. Under this mindset, the easy answer to why illness happens is becoming- someone in your life did something bad to you which screwed you up emotionally and/or you're doing bad things to yourself, which has damaged your body and destroyed your health. The primary course of medical treatment for these conditions will likely include prescribing one or more of the popular antidepressants which are heavily advertised on television and in all the top selling weekly and monthly magazines, along with sending these patients to cognitive behavioral therapy and patient support groups.

Analyzing the Abuse Related Studies- It's about Socioeconomics and Stacking the Deck

The abuse related trauma studies of fibromyalgia and CFS patients typically involve very small numbers of people, and they tend to be hospital clinic patients. When you're dealing with clinic patients, particularly here in the US, you're often hitting upon very specific socioeconomic demographic backgrounds. Typically clinic patients in the US are uninsured or underinsured. They tend to have lower incomes and are often members of the working poor; or they are on fixed incomes via Social Security, modest pensions, Disability, or Welfare. With some of these patients, they are under/uninsured and low or fixed income because they are chronically ill and/or permanently injured and this has severely impacted their income-earning potential and their overall ability to be in the workforce. These patients originally came from a broad range of socio-economic backgrounds, and have varying levels of education and job skills. They include those who came from stable working class and middle class backgrounds, including those with higher education. These are patients whose lives have been upended by their current medical situations.

On the other end of the clinic patient demographics scale are the life-long disadvantaged poor. These patients' medical histories involve a much more complex interaction of the problems typically faced by the life-long poor. Some of these patients grew up in heavily trafficked and/or heavily industrial areas where breathing in smog and other toxic fumes was the norm, where local waterways were heavily polluted by industrial run-off, and soil contamination from local industry was common. Some grew up in households where there wasn't always enough food to eat. Some grew up in substandard housing where peeling lead-based paint and mold growing inside the walls, floors or ceilings was the norm. Unfortunately higher crime rates (including rape), domestic violence, child abuse and neglect, are much more prevalent in economically depressed urban neighborhoods and rural communities where you find higher levels of unemployment and underemployment, a greater dependency on welfare, poorer quality schools, and high school drop-out rates which greatly exceed the state's and national averages.

Poor choices in personal behaviors- heavy smoking and drinking, illegal drug use, and domestic violence far too often walk hand-in-hand with a socioeconomically disadvantaged lifestyle. Eating a diet entirely composed of cheap fast food, tv dinners and other heavily processed foods, caffeinated and carbonated beverages, and high calorie sugary snacks is much more common in families who have extremely tight food budgets and live in neighborhoods where fast food restaurants, small corner groceries and convenience marts are much more common fixtures than regular supermarkets, higher end whole foods/organic foods stores, and farmers markets. When somatoform/biopsychosocial studies are done on clinic patients (particularly here in the US), the lifelong socioeconomic demographic backgrounds of these research subject patients are crucial factors regarding how much or how little their personal life-experiences truly reflects the greater so-called 'typical patient life-experience'. The socioeconomic demographics data should be disclosed when these studies are published. When researchers release a study claiming a link between lifestyle and personal history factors and the development of chronic illnesses and diseases, when these factors can be directly linked to patients' socioeconomic status there needs to be more transparency regarding whether or not such factors are being linked to patients from all socioeconomic backgrounds, or just patients from certain specific socioeconomic backgrounds.

Sociological/socioeconomic factors which should be assessed for Fibromyalgia and CFS clinic patients who are participating in lifestyle assessment, and personal, familial and lifelong medical history research studies, includes: Socioeconomic demographics and the general crime rate for each patient's current place of residence. Current household income. Highest levels of education attained by the patient, spouse or romantic partner, siblings, and parents or childhood legal guardians.

All research study patients should be asked: Did you grow up in public housing and/or other substandard housing? Are you currently living in public or substandard housing? Did your family ever rely on welfare, WIC and/or food stamps when you were a child? Are you currently on public assistance and/or are receiving food stamps? Were you ever forced to skip meals or go to bed hungry during childhood because there wasn't enough food in the house? Are you forced to skip meals now for financial reasons? Were you ever diagnosed with vitamin or mineral deficiencies? Were you ever small or underweight for your age during childhood? During your childhood, were your parents ever married to each other and did you all reside in the same household? Did you grow up in a high crime area? During your childhood, did you live in an industrial area where contaminated air, water or soil triggered various illnesses in local residents- such as asthma and certain forms of cancer? Do you live in such a place now? Did you have steady access to healthcare as a child? During your childhood, did your family have private health insurance coverage and family physicians, or were you mostly or completely dependent upon Medicaid or Charity Care funded clinic care or Emergency Room visits for your access to medical care?

Why Are Most Male Patients Typically Kept Out Of Fibromyalgia and CFS Patient Studies?

Another flaw with these fibromyalgia and CFS clinic patient studies is the test subjects are typically adult females. Girls and adult women who are socioeconomically disadvantaged and are from economically depressed urban neighborhoods and rural communities are at much higher risk for becoming the victims of both stranger-based violent crime and domestic abuse than girls and women who are from stable financial backgrounds and reside in safer middle class neighborhoods. Poor, undereducated women are more likely to stay in abusive relationships than middle class women with educations and marketable job skills. Children from low income and public assistance-dependent families are more likely to be abused and neglected. And girls are more likely to be sexually abused than boys. In economically depressed areas where the crime rates are higher, there is a higher risk potential for being sexually assaulted in one's own neighborhood or community- while walking to and from school, while taking the elevator or walking up or down flights of stairs alone in one's housing project or low-income apartment building, while walking to a local grocery store, while walking to friend's or relative's home, or while waiting alone at a bus stop in an isolated and quiet area when it's dark outside, etc. Smoking, excessive drinking, illegal drug use, and frequent heavy junk food binging are all more likely to serve as escapist comfort activities for people from lower-income and disadvantaged backgrounds.

These Fibromyalgia and CFS clinic patient studies which may very well skew towards studying and assessing the lives of lower-income, socioeconomically disadvantaged women simply aren't going to reflect the personal lives, family backgrounds, the likelihood of sexual assault victimization, and lifelong health histories of women from stable working class and middle class lifestyles and backgrounds who reside in safer neighborhoods.

Men are also diagnosed with Fibromyalgia and CFS, yet their socioeconomic-educational backgrounds, personal and familial life histories, and lifelong medical backgrounds are kept out of these childhood abuse trauma and adult domestic violence and rape victimization studies by somatoform and biopsychosocial medical researchers. Why are male Fibromyalgia and CFS patients typically kept out of the picture when it comes to these researchers developing the so-called psychosocial life history and personality profile for the 'typical' fibromyalgia and CFS patient; except on those occasions when male patients appear in car crash caused pain studies, or military combat-caused PTSD pain studies, where male patients are studied in regards to their experiencing chronic aches and pains? The answer to that is pretty simple and straightforward- you don't see and likely won't see studies conducted where male Fibromyalgia and CFS patients are asked if they were physically and/or sexually abused as children, or if they have been abused by a spouse or romantic partner, or have been sexually assaulted in adulthood. Adding more men into the equation- especially men from stable middle class familial, socioeconomic and educational backgrounds- by adding male patients to these somatoform/biopsychosocial studies which attempt to equate Fibromyalgia and CFS to childhood abuse, and adult domestic violence and rape victimization would likely unravel the theories that these illnesses are trauma-based somatoform disorders mainly caused by being the victim of childhood physical and/or sexual abuse, or spousal/partner abuse and adult rape. 

Beware Fibromyalgia Diagnosis Part Nine
Topic: Medical Care

Fibromyalgia And CFS As Psychosomatic Trauma Illnesses- Part Two:

More Articles and Abstracts Linking Fibromyalgia (and CFS) to Abuse Trauma

From “203 Sexual Abuse Issues: An Introduction for Child Welfare Professionals

A Training Outline” Developed by Cyndi King For The Pennsylvania Child Welfare Training Program University of Pittsburgh, School of Social Work Pittsburgh, PA February 2006”:

Section VI: Sexual Abuse Victim and Sibling Dynamics (continued)

Step 2:

Behavioral Indicators

It is essential to note that no one (1) behavior or even clusters of behaviors equals sex abuse. Behavioral indicators are only a symptom of the abuse, not a casual factor. The trainer should remind participants to not draw conclusions from these indicators displayed by children but to use the indicators as information to be weighed with ALL of the information gathered.

Behavioral Indicators: Large Group Activity

The trainer should utilize a sheet of flip-chart paper and begin by listing “Other Possible Behavior Indicators” at the top of the sheet of paper. The trainer should poll the large group to determine if there are other behaviors that they are aware of which could be listed as a behavioral indicator. The trainer should be sure to list both cruelty to animals and fire setting behaviors on that list. Although, there is controversy over whether these behaviors are definitely linked to sexual abuse there is some research that states there is a correlation. Most recently, there has been limited research regarding a possible connection of fibromyalgia and history of sexual abuse. http://www.pacwcbt.pitt.edu/Curriculum/203%20Sexual%20Abuse%20Issues/Content/Content.pdf

"Fibromyalgia Syndrome: An Introduction", from Fibrant Living- a fibromyalgia patient's website:

Some doctors persist in believing that FMS is a psychiatric disorder, but researchers have been unable to distinguish between FMS, rheumatoid arthritis and other patients who experience chronic pain using psychiatric techniques (Starlanyl & Copeland, 2001). Some physicians have reclassified fibromyalgia as a "functional somatic syndrome," claiming that it is characterized more by disability than medical explanation, suggesting behavioral and psychiatric treatment rather than any other therapies (Barsky & Borus, 1999). While the incidence of psychiatric disorders such as depression is no higher in patients with FMS than in those with other chronic pain disorders, the number of fibromyalgia patients who have experienced acute or long term trauma or abuse is far higher than that of the general population (Romans et al., 2002 and Van Houdenhove et al, 2004) http://www.fibrantliving.com/fibromyalgia-syndrome-an-introduction/

From the article: “Fibromyalgia and Post Traumatic Stress Disorder (PTSD):

2.What can cause Post Traumatic Stress Disorder? Traffic accidents (or near misses), combat, grievous losses, life-threatening diagnoses, ICU stays, traumatic illnesses, disfiguring accidents, heart attacks, spinal cord and brain injuries, rape, muggings, fires, near-drownings, childhood abuse, domestic violence, living in a war zone, hurricanes and other natural disasters, torture, terrorist attacks, violent assaults, imprisonment, kidnappings, etc..

4.What chronic conditions can develop as a result of long term PTSD? Chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, multiple chemical sensitivites, interstitial cystitis, myofascial pain, low back pain, pelvic pain.

http://www.fibromyalgia-recovery.org/post_traumatic_stress_disorder.htm

  Abstract for the study "Somatoform dissociation and traumatic experiences in patients with rheumatoid arthritis and fibromyalgia”, which links Fibromyalgia to Somatoform Dissociation:

http://www.narcis.info/publication/RecordID/oairepositoryubnrunl206652052/Language/nl/repository_id/ru_bibonly/%3Bjsessionid=qhpm763l9dk9

Note: A definition/explanation for Conversion Disorder can be found here: http://www.mayoclinic.com/health/conversion-disorder/DS00877

Understanding Somatoform Dissociation:

“Soma” means “body”, and this form of dissociation can include involuntary muscle contractions, or physical sensations that were in some way associated with past traumatic experiences being re-experienced in the body as “body memories”. Alternatively, the person may experience sudden analgesia, partial paralysis, or numbing of all or part of the body to physical sensations. http://users.bigpond.net.au/erlyons/dissociation.htm

Beware The Fibromyalgia Diagnosis Part Eight
Topic: Medical Care

More Fibromyalgia Theories- Part Four

 

Nitric Oxide Cycle Theory:

“Nitric Oxide Cycle Theory: Will It Explain CFS, FM, and Other ‘Unexplained’ Illnesses? - Q&A with Martin L. Pall, PhD”:

Martin L. Pall, PhD, is generating excitement in scientific communities worldwide with his theory that a "stressor-initiated" biochemical mechanism - the nitric oxide/peroxynitrite (NO/ONOO-) cycle - may be responsible for CFS, FM, and other syndromes....

...Simply put, Dr. Pall proposes that the complex NO/ONOO- cycle he describes may result in high levels of oxidants, which affect different tissues in different individuals, accounting for a “stunning” variety of symptoms. Dr. Pall also believes a well-chosen regimen of antioxidants and other agents may help the body “downregulate” the NO/ONOO- cycle biochemistry.

...I proposed that nitric oxide, acting via its product peroxynitrite, a potent oxidant, acts to initiate a biochemical vicious cycle which is the cause of illness.

This cycle, which we now call the NO/ONOO- (pronounced no, oh no!) after the structure of nitric oxide (NO) and peroxynitrite (ONOO-) is based on many well documented biochemical mechanisms, and the combination of such mechanisms is a complex vicious cycle which can propagate itself over time, producing chronic illness.

 

 Read Dr. Pall's entire theory here: http://www.prohealth.com/me-cfs/library/showarticle.cfm?id=8071&t=CFIDS_FM

Fibromyalgia And CFS As Psychosomatic Trauma Illnesses- Part One:

The theory that Fibromyalgia and Chronic Fatigue Syndrome are PTSD-type trauma illnesses related to prolonged psychological stress which leads to pain-based illnesses, has spread like wildfire on the internet among the fibromyalgia community and out into the real world. Years of stress caused by being the victim of physical and/or sexual abuse as a child, or suffering from neglect as a child, or being raped as an adult, or being battered by a spouse or romantic partner, or suffering emotional trauma caused by undergoing surgeries and/or being in accidents (particularly automobile accidents), and the like which supposedly damage the adrenal system, hypothalamus, etc. making one vulnerable to developing a chronic pain condition that is partly physical in origin and partly psychological- with the greater emphasis on the 'psychological'.

There is an entire branch of somatoform/biopsychosocial medical research which attempts to link a wide variety of diseases and medical conditions to emotional trauma- from musculoskeletal and pain disorders, to cancer, diabetes and heart conditions. [This subject of the somatosation of illnesses related to this wider variety of illnesses/diseases will discussed in detail, in another blog entry at a later date.] Fibromyalgia and CFS appear to be popular illnesses for study in relation to illness being caused by emotional trauma. Considering Fibromyalgia has become a catch-all label and a fad diagnosis which has received a lot of public attention in recent years, it isn't all that surprising. And these research study abstracts and articles, as well as separate articles written by physicians and other health-care professionals, researchers, academics, social workers, psychologists, members of advocacy groups, and by patients themselves are very easily found online. In addition, the number of formal medical information websites has grown tremendously in recent years. All of this has made the internet the most popular place to obtain medical information.

A Sampling of Articles and Abstracts Linking Fibromyalgia (and CFS) to Abuse Trauma

Abstract of “Childhood trauma and diurnal cortisol disruption in fibromyalgia syndrome”; article published in Psychoneuroendocrinology, published in April 2006:

http://www.fmaware.org/site/News2?page=NewsArticle&id=5531

 

Abstract of “Psychosocial factors in fibromyalgia compared with rheumatoid arthritis: I. Psychiatric diagnoses and functional disability” from the Journal Psychosomatic Medicine:

http://www.psychosomaticmedicine.org/cgi/content/abstract/59/6/565

Article: “FIBROMYALGIA AND PTSD (Is there healing?)” by Theresa Goodell. Ms. Goodell is a professional life coach, fibromyalgia patient, and a Fibromyalgia and Autism advocate:

http://www.healingtides.net/fibro_and_ptsd.htm

Quote from “World Report On Violence And Health” Chapter 3 Child abuse and neglect by parents and other caregivers”:

Importantly, there is now evidence that major adult forms of illness – including ischaemic heart disease, cancer, chronic lung disease, irritable bowel syndrome and fibromyalgia – are related to experiences of abuse during childhood (99–101). The apparent mechanism to explain these results is the adoption of behavioural risk factors such as smoking, alcohol abuse, poor diet and lack of exercise.

http://www.who.int/violence_injury_prevention/violence/global_campaign/en/chap3.pdf

From the article: “Child Abuse and Chronic Fatigue Syndrome” by Allan N. Schwartz, LCSW:

It seems as though every time we discover how truly damaging child abuse is to people throughout their lives, we learn even more facts about the effects of abuse and neglect. Emory University School of Medicine, in Atlanta, Georgia conducted a study that draws a direct connection between child abuse and neglect and the onset of Chronic Fatigue Syndrome during adulthood. The study was published in the January 2009 issue of the Archives of General Psychiatry.

People diagnosed with Chronic Fatigue Syndrome have a high incidence of experiencing neglect and/or abuse during their childhood. In addition, the subjects in the study with CFS also had suppressed levels of the hormone, Cortisol....

It is known that chronic stress and trauma, as occurs in abusive situations, ramps up the immune system, keeps it activated more than it should be until the system reaches a point where it is no longer able to produce enough cortisol to keep things running smoothly. In this case, the result is Chronic Fatigue Syndrome.

This degenerative process can continue into adulthood if stress and abuse continue. In addition, there is nothing to prevent the same process from starting once already into adulthood. In other words, trauma and stress, if they are chronic, has damaging physical effects at any point during life.

It is estimated that 2.5% of the adult U.S. population suffers from CFS. It is also estimated that four in every 1000 people have experienced abuse when they were children.
How do we stop this problem? http://www.mentalhelp.net/poc/view_doc.php?type=weblog&id=591&wlid=5&cn=5

 Quotes from “The Development of Persistent Pain and Psychological Morbidity After Motor Vehicle Collision: Integrating the Potential Role of Stress Response Systems Into a Biopsychosocial Model” by Samuel A. McLean, MD, Daniel J. Clauw, MD, James L. Abelson, MD, PHD, and Israel Liberzon, MD:

Among survivors of motor vehicle collision (MVC), persistent symptoms are common even after “minor” collisions and result in tremendous patient suffering and societal costs (1– 4). These symptoms often present as psychological disorders, such as posttraumatic stress disorder (PTSD) (2,3). However, a substantial portion of post-MVC morbidity also involves chronic pain syndromes. Whiplash-associated disorders (WAD) are the prototypical MVC-related pain disorders, but fibromyalgia, with its more widespread pain, can also be triggered by MVC (5). For each of these disorders, the transition from acute injury to chronic illness remains poorly understood.

During the past 2 decades, considerable advances have been made in developing biopsychosocial models to describe the transition from acute injury to chronic pain. These advances utilized novel conceptualizations of cognitive-behavioral factors, such as pain-related fear and avoidance (6), which appear to influence the development of chronic pain in many individuals. The cyclical process whereby pain produces fear, which leads to behavioral avoidance, inactivity, disability,and increased focus on pain avoidance, is well-described in the Vlaeyen’s model of chronic pain pathogenesis (6).....

...Indeed, evidence suggests that PTSD and chronic pain disorders after trauma have many common links. The objective of this review is to examine available evidence that centrally controlled stress response systems can influence the development of all three conditions—WAD, fibromyalgia, and PTSD—after MVC and to suggest that insights from the PTSD literature may enhance our understanding of the development of WAD and fibromyalgia after MVC. An expanded biopsychosocial model for the development of posttraumatic pain syndromes is proposed that emphasizes the importance of interactions between central neurobiological processes and identified cognitive-behavioral factors during their development. http://www.psychosomaticmedicine.org/cgi/reprint/67/5/783.pdf

Beware the Fibromyalgia Diagnosis Part Seven
Topic: Medical Care

Theorists and Theories Collide, With Patients Caught In the Middle- Part Three

A Few More Theories Regarding Fibromyalgia's Causes and Treatements:

Fibromyalgia As a Distinct Mental Illness

This article, “Fibromyalgia: The Enigma and the Stigma” by Stephen M. Stahl, M.D., PhD offers the viewpoint that Fibromyalgia is a distinct mental illness disorder akin to Obsessive Compulsive Disorder, and Social Anxiety Disorder.

Excerpt from Dr. Stahl's article:

About a third of those diagnosed with fibromyalgia have major depressive disorder (MDD). Most qualify for the diagnosis of a somatoform disorder. Many have associated anxiety disorders.^1-4 If these mental disorders are subtracted, is there anything "real" left--especially considering that "normal" people have aches and pains all the time, with almost all of us experiencing a somatic symptom (e.g., headache, neckache, backache, joint ache, muscle stiffness) every 4 to 6 days? Some skeptical experts apply Yogi Berra's logic to fibromyalgia, namely, "If I hadn't believed it, I wouldn't have seen it."⁸ Thus, fibromyalgia is considered by some to be the result of unconscious conflicts manifesting themselves as physical symptoms, with pain serving as a somatic metaphor for unhappiness and a life that is not working out.

This rather unsympathetic and old-fashioned point of view is slowly giving way to the idea that fibromyalgia may be as "real" as obsessive-compulsive disorder, social anxiety disorder, and other previously ill-defined entities that were not recognized as legitimate illnesses until antidepressant treatments began to define them as treatable. Furthermore, it is now well recognized that psychiatric disorders frequently do not occur in isolation, and the fact that fibromyalgia is comorbid with depression or anxiety actually makes this entity more similar to than different from MDD, generalized anxiety disorder, and most other contemporary psychiatric illnesses in the general population. http://www.psychiatrist.com/pcc/brainstorm/br6207.htm

Alternative Therapy Approaches to Treating Fibromyalgia and CFS

The Marshall Protocol:

http://www.marshallprotocol.com/forum2/2275.html

Dr. Trevor Marshall (a Ph D. Electrical Engineer, not a physician, but he refers to himself as a 'Biomedical Engineer') developed this controversial protocol for 'curing' illnesses with immune and/or autoimmune components to them- Fibromyalgia CFS, Lyme, Lupus, MS, and others- by viewing Vitamin D as the 'enemy' which prevents the body from fighting off harmful bacterial infections. His protocol involves the use of the hypertension medication Benicar at higher doses, and the antibiotic Minocycline, along with the complete avoidance of natural sunlight, bright lights, foods that contain Vitamin D, and most other medications. The idea here is to have an extremely low level of vitamin D in the body in order to fight off infection, to cure chronic illnesses that are, or may be, bacterial based. The Marshall Protocol must be followed for several years in order to “cure” the patient, and its followers are pretty much serving as test subjects for the protocol. This protocol has inherent dangers to it and can cause life-threatening health problems. There are no scientific studies to indicate this protocol actually works or has any medical benefits. On the other hand, there are real scientific studies which indicate Vitamin D deficiency causes various health problems.

Marshall Protocol Risks:

http://www.natmedtalk.com/general-discussion/1643-marshall-protocol-stay-away-one.html

Serious Side Effects Risks of the Marshal Protocol:

http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1307141

 

 

Chelation Therapy:

Chelation therapy was developed to help patients with heavy metal poisoning, such as Mercury Poisoning. There is nothing to indicate fibromyalgia or CFS are related to toxic levels of heavy metals in the body, and the same holds true regarding toxic levels of calcium. But this therapy is listed as an alternative treatment for fibromyalgia, and is touted on some fibromyalgia/CFS patient forums and message boards (just like the Marshall Protocol).

Fibromyalgia Alternative Therapies- Chelation Therapy

http://www.fibromyalgia-symptoms.org/chelation-therapy.html

 

Chelation, the Marshall Protocol and various other alternative treatments and protocols are being touted on the internet as “cure-alls” for various chronic illnesses and diseases, including fibromyalgia and chronic fatigue syndrome. These treatments are most often touted in Usenet, and at various patient forums, groups, and message boards by posters claiming they have been greatly helped or outright cured by these therapies.

Beware the Fibromyalgia Diagnosis Part Six
Topic: Medical Care

Theorists and Theories Collide, With Patients Caught In the Middle- Part Two

Some more theories about the causes of Fibromyalgia and CFS:

Fibromyalgia and the ADD/ADHD and Autism/Asperger's Syndrome Link

There are some out there in the Fibromyalgia medical/research and patient communities who are attempting to link Fibromyalgia to ADD/ADHD and Autism/Asperger's Syndrome based upon several factors- cognitive and memory impairments (brainfog) which leave some fibromyalgia patients too 'scattered' to concentrate well and complete detailed, complex tasks; fibromyalgia patients are thought to be hyperactive, overachieving types; and they are thought to be super-sensitive and overstimulated by nearly anything and everything in the outside world.

Some fibromyalgia patients have been given the same stimulant medications that are given to those with ADD/ADHD and this has supposedly decreased their pain levels and increased their ability to concentrate and focus on the task at hand. There is also supposed to be a subset of ADD/ADHD patients who experience some physical pain and fatigue symptoms that are thought to be similar to fibromyalgia. The biology behind this is tied into the theories regarding dopamine deregulation- that fibromyalgia patients lower than normal levels of the neurotransmitter dopamine.

From the “Fibromyalgia ( FMS )” page at psyweb.com:

There is also some indication that fibromyalgia can be hereditary, as it tends to run in families. Incidence of sleep disorders, blood sugar difficulties, headaches or migraine, ADD or ADHD, Asperger's syndrome, irritable bowel, joint problems, and food allergy or intolerance may all be common in the families of fibromyalgia patients. It is unclear how these conditions interact, or what causes what, but in fibromyalgia it often seems like several conditions pile on top of each other. (http://www.psyweb.com/FMS/fibromyalgia.jsp)

 From ADD/ADHD and Fibromyalgia (FMS), “Where Is the Connection?” by Glenda H. Davis, MD, & Patricia Stephens, CNC:

We will refer to both ADHD and ADD as "ADD." We encourage you to: 1) forget any preconceived ideas about what ADD is or isnÍt; 2) read with an open mind; 3) seek to learn all you can about adult ADD.

Two years ago we raised the question, "Is there a connection [between ADD and FMS]?"(2). We believe there is, since ADD and FMS: a) respond to the same medications (stimulants), b) have similar symptoms, c) run in the same families.

An ADD work-up typically evaluates emotional and behavioral, but not physical, symptoms, whereas an FMS work-up usually evaluates physical, but not emotional or behavioral, symptoms. But when ADD and FMS patients are asked the same questions, the similarities between these two conditions are more obvious.

(Glenda H. Davis, MD, & Patricia Stephens, CNC) http://www.ncgiadd.org/members/newsletters/0208/0208e.cfm

From the ADDFibro website:

Autonomic Dysfunction Disorder = the real ADD?

The common denominator for ADD and FMS may be autonomic nervous system (ANS) dysfunction. The ANS is composed of the sympathetic ("fight or flight"), parasympathetic ("rest and digest"), endocrine (hormones), and enteric (gut) nervous systems. When these systems are balanced, the body is healthy. When they are unbalanced, the body is not. Since the ANS affects every organ system in the body, it is not surprising that the symptoms associated with ADD and FMS are so varied. It may show up in several members of one family, in several different presentations.

In general, with increased sympathetic nervous system tone, the person is geared up --"hyper"-- and has difficulty relaxing; with increased parasympathetic nervous system tone, the person appears "lazy" or "sluggish." But the systems are interrelated in complex ways, with innumerable possible variations. An excellent book on the many presentations of adult ADD is DRIVEN TO DISTRACTION by Drs. Hallowell and Ratey. (http://addfibro.com/connections.htm)

 

In “Fibromyalgia: A Complete Guide from Medical Experts and Patients”, Chapter 13- ADHD and Fibromyalgia: Related Conditions? by Joel L. Young MD and Judith Redmond MA, covers their research on linking Fibromyalgia with ADD/ADHD and how this effects their patient care protocols and treatments. They wrote:

We have found a strong relationship between long-standing ADHD and the development of chronic pain conditions....

Surprising Early Findings

Besides reporting classic ADHD symptoms, many of these patients complained of severe muscle pain, unrelenting fatigue, abdominal distress, and intermittent headaches. A proportion had been previously disgnosed with fibromyalgia syndrome (FMS), chronic fatigue syndrome (CFS), irritable bowel syndrome (IBS), Epstein-Barr syndrome, or Lyme's disease. (p. 167)

They have created the term: ADHD/fibromyalgia and related symptoms complex (AFRSC) to refer to patients who have both ADHD type cognitive symptoms and fibromyalgic aches, pains, and fatigue.

AFRSC patients obtain various diagnoses including systemic lupus, chronic fatigue syndrome, and rheumatoid arthritis....

It is important to consider that ADHD may be at the core of some of these conditions. ADHD symptoms are evident in childhood and historically predate most patients' pain and fatigue complaints. Our own research shows that, among self-referred fibromyalgia patients, a large number, perhaps 80%, meet criteria for ADHD....

...If ADHD proves to be a common factor in chronic conditions, primary care physicians, rheumatologists, and other specialists will have to adopt psychotropic medications...

Physicians need to be advocates for their patients....the people described in this chapter live on the margins of society, and they may suffer for decades. Current treatments are insufficient. Therefore, the relationship of ADHD to other conditions surely deserves greater scrutiny. (p.176)

  The problem with linking ADHD and environmental based illnesses like bacterial and viral infections, is these illnesses themselves can impair the body in various ways which can include cognitive problems. These so-called 'ADHD indicators' are actually symptoms of the diseases the patients are suffering from. Mental fatigue, memory and concentration impairments that can mimic ADD/ADHD are due to these bacteria and viruses crossing the blood-brain barrier in patients with chronic and persistent bacterial and viral infections. It's also well documented that some bacterial and virus based diseases, and autoimmune disorders like Lupus and MS (which very well may be caused by bacteria and viruses) actually cause organic brain damage to some patients, such as causing low blood flow to certain parts of the brain.

These medical researchers are looking at the situation backwards. Someone who has ADD/ADHD type symptoms alongside the symptoms and/or diagnosis of chronic bacterial or viral infections and/or autoimmune disorders has ADD/ADHD symptoms because their bodies are compromised by illness. To claim that people who have developed such diseases do so because they must have had undiagnosed ADD/ADHD since childhood and it left them psychosomatically vulnerable to developing chronic health problems in adulthood is far-fetched at best, and medically harmful at worst.

Linking Autism to Fibromyalgia

The “Irritable Everything” Syndrome

Fibromyalgia is a complex syndrome characterized by pain amplification, musculoskeletal discomfort, and systemic symptoms. In FMS, there is a generalized disturbance of the way in which pain is processed by the body. I think the definition of FMS was widespread allodynia and hyperalgesia describes it very well. “Allodynia” means ordinary non painful sensations are experienced as pain sensations. “Hyperalgesia” means that pain sensations are intensified and amplified. The combination can be disastrous. If there is a physically traumatic initiating event, these changes in the way your central nervous system processes pain seem to worsen.

You may be sensitive to odors, sounds, lights, and vibrations that others don't even notice. The noise emitted by fluorescent lights may drive you to distraction. At times, your body may interpret touch, light, or even sound as pain. (“Fibromyalgia & Chronic Myofascial Pain: A Survival Manual: Second Edition”, by Devin Starlanyl and Mary Ellen Copeland, p.6)

 "Fibromyalgia Pain Linked With Central Nervous System Disorder" article from ScienceDaily.com:

Fibromyalgia is a chronic pain condition that causes widespread pain and tenderness throughout the body. A University of Michigan study, published in The Journal of Pain, shows that fibromyalgia is associated with central nervous system abnormalities evidenced by patients’ elevated sensitivity to auditory and pressure sensations.....

(Article its entirety can be found here: http://www.sciencedaily.com/releases/2008/05/080531091216.htm)

 As Fibromyalgia, like Autism, is believed to involve a central nervous system disorder component which makes sufferers super-sensitive to external stimuli, this likely explains why the connection between Fibromyalgia and Autism is made by some in the Fibromyalgia and Autism medical and patient communities.

Definitions of Autism with helpful links:

http://en.allexperts.com/q/Autism-1010/Define-Autism-1.htm

From the blog entry: “Fibromyalgia - Asperger/Autism Connection?”

Aryeh Abeles, MD and other contributing doctors have authored research recently published in the Annals of Internal Medicine. The study put forth the notion that Fibromyalgia sufferers have a lower pain threshold.

Maybe it's better to sayt that they have a greater sensativity to everything. Maybe Fibromyalgia sufferers sensory defensive...

Having recenly been reading the book “Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You Are Sensory Defensive in an Overstimulated World:, I started wondering if there is a connection between the overstimulated state of our Aspie brains and the existance of chronic pain.

I wonder if Aspies have more occurance of Fibromyalgia and other similar conditions?

http://aspiesinc.blogspot.com/2007/05/fibromyalgia-aspergerautism-connection.html

Note: the responses to this blog entry.

Beware the Fibromyalgia Diagnosis Part Five
Topic: Medical Care

Theorists and Theories Collide, With Patients Caught In the Middle- Part One

 All the differing theories and ideas regarding what Fibromyalgia and Chronic Fatigue Syndrome are and what causes these illnesses, which are put out by the 'top experts', are often vague and conflicting. Some experts have created less complex, yet nebulous theories; while others have created an entire mythos surrounding these illnesses.

Ockham's Razor- the principle that the simplest theory is often the best- appears to never crossed the minds of these medical researchers and practitioners.

The Fibromyalgia Spectrum

The Fibromyalgia Spectrum theory was first proposed by Dr. Muhammad Yunus, and has been continued by Dr. Mark Pellegrino (a physician who has been diagnosed with fibromyalgia). Under this theory Fibromyalgia is a part of Dysregulation Spectrum Syndrome, under which Fibromyalgia falls into an area of illness that is broken down into eight subsets.

As a senior resident at The Ohio State University in 1988, I gave a lecture on Fibromyalgia at the Physical Medicine Grand Rounds. One of my lecture slides was entitled “Fibromyalgia, A Spectrum of Conditions?” I discussed how Fibromyalgia appears to be a “broader” condition with specific subsets. Fibromyalgia was in that area between normal and disease – the “gray” area.

Some of the subsets were closer to normal, involving regional pain only, or milder symptoms without numerous associated conditions. Some subsets were closer to abnormal, with some features of connective tissue or rheumatic diseases, but were not quite “there.”

Today I’m convinced Fibromyalgia is indeed a “broader” condition with various subsets. I believe this information is helpful in explaining why everyone’s symptoms are different even though they all have Fibromyalgia. This chapter addresses how the Fibromyalgia spectrum is part of the big picture in understanding Fibromyalgia.

Fibromyalgia Is a Distinct Medical Entity, and Appropriately So

We have long recognized, however, that many conditions overlap it, and various conditions exist that can lead to secondary Fibromyalgia. Dr. Muhammad Yunus, MD, [a professor and FM specialist at the University of Illinois College of Medicine] has developed the concept of Dysregulation Spectrum Syndrome (DSS) to describe how conditions overlap.1

Dr. Yunus describes DSS as representing various associated conditions that share similar clinical characteristics and pathologic mechanisms with Fibromyalgia. Ten conditions are in the DSS umbrella: Fibromyalgia, Chronic Fatigue Syndrome, Irritable Bowel Syndrome, tension headaches, migraine headaches, primary dysmenorrhea, periodic limb movement disorder, restless leg syndrome, temporomandibular pain syndrome, and myofascial pain syndrome. He predicts other entities will be added to this list in the future. ("The Fibromyalgia Spectrum- Part of the Big Picture in Understanding Fibromyalgia", Mark J. Pellegrino, MD http://www.fmscommunity.org/spectrum.htm )

The eight subsets range from being completely asymsptomatic to having severe symptoms of illness, which is indicative of disease. Details regarding these subsets and how they fit into the overall 'big picture' can be found on the FMS Community "spectrum" webpage link in the paragraph above.

The Trauma Related Illness and Symptoms theory:

Patricia D. McClendon, a Clinical Social Worker with psychiatric experience approaches the subject of Fibromyalgia and Chronic Fatigue Syndrome from the viewpoint that these conditions are Trauma Illnesses, not true Somatoform (Psychosomatic) illnesses, which are related to Dissociative Disorders/Multiple Personality Disorder, and Post Traumatic Stress Disorder.

Explaining Dissociative Disorders, from the Mayo Clinic website:

http://www.mayoclinic.com/health/dissociative-disorders/DS00574

Some excerpts from Patricia McClendon's article:

Many trauma survivors meet DSM-IV criteria for PSTD and/or dissociative disorders. Many also are diagnosed as having somatoform conditions which in my mind are conditions like fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, pain disorders, etc., (maybe MS and RA, etc.). It's only normal to have physical symptoms after enduring significant trauma because the trauma, I believe, permanently alters the survivors' neurochemistries....

"Long-standing somatic symptoms often reflect deeply dissociated visceral memories of traumas, long-standing interpersonality conflicts, and chronic self-destructive behavior." (Frank W. Putnam, 1989, Diagnosis & Treatment of MPD, p.293). I agree with the first part of the sentence, but since trust is so damaged, mutual loving relationship are difficult for many survivors, then the last part goes like this ... I was a bad little girl (or boy) ... that's why daddy hurt me and the reason I have fibromyalgia is because I am bad and should hurt ... and, if that doesn't cause enough pain, I must inflict it, so I can finally be punished enough for being bad ... then I can have a "good" time until the next time. Or, if I don't have pain today that means something is going to happen to cause me pain ("waiting for the other shoe to drop", so, it is safer to stay in pain).

I would imagine that you would find raging workaholic suffering with fibromyalgia and the like ... because, they can never do enough to erase their badness, so they push their bodies past the limits. Likewise for the chronic fatiguers. I think the hyperviligance of trauma survivors can be emotionally and physically exhausting, they are never safe, never accomplished enough, etc...

FMS may be the presenting manifestation in patients with PTSD. The diagnosis of PTSD should be considered in ANY, ANY patient with symptoms of FMS and a history of significant trauma, whether in childhood (physical, sexual, and/or extreme emotional abuse) or in adulthood (rape, battering, car wrecks, combat in the military).. (Patricia D. McClendon, MSSW http://www.clinicalsocialwork.com/trauma.html)

 

Beware The Fibromyalgia Diagnosis Part Four
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?

Beware The Fibromyalgia Diagnosis Part Three
Topic: Medical Care

One Step Forward, Two Steps Back

More recent on the fibromyalgia medical scene- and with a much smaller number of fibromyalgia "experts" owning up to this- is the link between the fibromyalgia diagnosis and the reality that many patients are actually suffering from chronic bacterial or viral infections, or other environmental based illnesses. This seems like it would be a step in the right direction in sorting out the mess that is this 'catch-all' diagnosis called fibromyalgia, but it's not that simple...  

Illnesses that produce the same symptoms as “fibromyalgia”: Lyme Disease and it's various co-infections, including Ehrlichiosis and Bartonella; chronic viral infections including Epstein Barr, Cytomeglovirus etc.; and other environmental factors are being acknowledged as the causes of “fibromyalgia” in a rather roundabout way by some in the fibromyalgia medical community, but not by the vast majority. So in-turn some medical experts are calling fibromyalgia a neuromuscular pain amplification syndrome which is caused by combination of hormones, the immune system and those pesky bacterial, viral or environmental illness, all interacting with each other in a bad way, which makes people ill...with “fibromyalgia” or Chronic Fatigue Syndrome. And yes, they still throw in the psychological stress related component to this. After all, more women are diagnosed with fibromyalgia then men, although male patients seem to be slowly gaining ground on females in terms of being diagnosed with FM or CFS, so the 'flaky and emotionally messed-up woman' component to fibromyalgia's causes stays put within the parameters of this revised understanding of fibromyalgia. Ditto with the 'physical/sexual abuse victim' component.

Hitting the Books

In the third edition of Jacob Teitelbaum's book “From Fatigued to Fantastic!” the bacterial, viral and environmental causes of Fibromyalgia and CFIDS are discussed. Dr. Teitelbaum makes the admission: “Indeed many excellent physicians feel that the large majority of CFS/FMS patients have Lyme Disease.” on page 145 of “From Fatigued to Fantastic!”.

Dr. Teitelbaum also acknowledges the limitations of the current Lyme tests to detect all cases of Lyme and apparently supports the ILADS protocols (without actually mentioning ILADS) for diagnosis of the disease and for prolonged antibiotics treatment for Lyme patients. This seems like it should be a bombshell admission!  Keyword here is 'should'. He also acknowledges the four known viral suspects behind other cases of Fibromyalgia and CFIDS, as well as other bacterial, viral and environmental agents, and even lists medical tests he recommends his readers have their physicians conduct to test them for these various bacteria, viruses and other agents. In a way this is progress, but certainly not what one would hope.

Beyond Teitelbaum's book, and one or two others who mention Lyme and it's co-infections, and chronic viral infections in regards to the Fibromyalgia and CFS diagnosis, there is just Dr. Daniel Dantini... Dr. Dantini's book, ”The New Fibromyalgia Remedy”, is a refreshingly psycho-babble free book dealing with the chronic viral and delayed food allergy causes of Fibromyalgia and CFS. He also discusses various conditions with similar symptoms to Fibromyalgia and CFS. His assessment plan, after ruling out other medical conditions and diseases, involves testing the patient for the viruses: Epstein-Barr, Cytomeglovirus, Herpesvirus 6, Human Parvovirus B19; as well as for delayed food allergies. Treatment involves anti-viral medication regimens to hopefully knock the found viruses into remission; plus dietary changes to eliminate troublesome foods from the patient's diet for a while, then to gradually reintroduce these food's back into the diet, one at a time, so the patient's body will learn to stop reacting inappropriately to these foods. Sadly, Dr. Dantini's contribution to understanding the viral root causes behind the fibromyalgia and CFS puzzle goes largely ignored by many medical professionals and patients in the FM/CFS community, particularly with the fibromyalgia half of the equation. You will not see his book, his work, his research findings, or the success stories culled from his own patient files touted on fibromyalgia awareness and advocacy websites, nor will you find them mentioned at your typical online fibromyalgia support group/message board.

The rest of the Fibromyalgia books on the market completely ignore the fact that some researchers and doctors are beginning to understand and to publish medical studies which prove that “fibromyalgia” (an all-purpose umbrella label) is in fact various different illnesses and diseases, including chronic and persistent bacterial and viral infections, which have similar symptoms. Instead most fibromyalgia books completely ignore the germs and focus solely on pain medications, antidepressants, sleep hygiene, gentle physical exercises, various changes in diet, the use of vitamins, minerals and other supplements, and power-of-positive-thinking, stress-reduction and cognitive behavioral type approaches.

Note: If you want to understand the hows and whys behind Lyme Disease and it's fellow tick-borne infections being so often mis-diagnosed and mis-classified as fibromyalgia and CFIDS, read both Patricia Weintraub's “Cure Unknown”, and Constance Bean's and Lesley Ann Fein's “Beating Lyme”.

But, even with a little bit of progress appearing on the fibromyalgia front, there are major caveats here as well:

For one, Dr. Teitelbaum also supports the psychological trauma hype as a causative factor behind fibromyalgia. His website features “Book Notes”- supplemental articles and letters written by him and/or other writers on subjects pertaining to the chapters of his books. Among the Book Notes for “From Fatigued to Fantastic!” is an article of the subject of the evolutionary aspects of fibromyalgia, “Stone Agers in the Fast Lane”, written by Jeff Maitland Ph D. Some quoted excerpts from Dr. Maitland's lengthy essay appear below:

He also recognizes that most chronic fatigue patients are type-A personalities and that their perfectionism, their need to control, and their drivenness to succeed are ultimately rooted in the development of low self-esteem in childhood coupled with the feeling of not being able to defend their emotional boundaries....

Fibromyalgia is not a disease in the usual sense, it is a fear disorder based on a genetic quirk. It is a maladaptive fear response that results when unrelenting stress and trauma, destructive parenting, and/or childhood trauma are coupled together in a highly sensitive individual who pursues the futile attempt to live in a chaotic world at odds with his or her bodily and psychic resources. Since fibromyalgia begins as a maladaptive fear response, it begins as a central nervous system disorder that then spreads to the entire body, but especially to the endocrine and immune systems....

Fibromyalgia can be divided into two broad and sometimes overlapping types, posttraumatic and primary....Even though posttraumatic patients may not always exhibit the same psychological and emotional precursors that patients with primary fibromyalgia do, both types are clear examples of a chronic fear condition. For both types the world has become a fearful place.....

As Dr. Teitelbaum points out, most primary fibromyalgia patients have low self-esteem; they are perfectionists who are driven to control their world and succeed in it. As he said in a lecture once, most of these patients, even if they were to receive four Nobel prizes, would still think they hadn’t done enough. Due to their low self-esteem many have a fear of being seen as weak. As an unconscious strategy to get the approval they never received as children, they become driven overachievers and perfectionists. As a result, they burn out in the futile attempt to feel good about themselves by seeking external approval. Their low self-esteem is sometimes the result of having been abused or made to feel inadequate by destructive parents or significant care givers....

Like the abused experimental animals and many battered women, people with fibromyalgia have lost the ability to protect themselves and do what is best for their own well-being and happiness. Many unconsciously believe that they were the reason for the abuse that they suffered as children. As adults they often think that they are the cause of other people’s outbursts....Like most people with fear disorders, they suppress and deny their fear and, as a result, block their ability to trust. Unable to trust they often find themselves unable to open to the love we all want and expect.....In the end, they are only looking for someone to give them the love, support, and sense of safety they never had. For only in a safe therapeutic environment is it possible for traumatized individuals to appropriately discharge their highly tuned states of sympathetic arousal....

Since fibromyalgia is a fear response rooted in unresolved trauma and/or relentless stress that is constantly being triggered by the patient’s world, it goes without saying that a form of psychotherapy that is capable of discharging chronic sympathetic arousal is an extremely important part of the treatment program.

(Jeff Maitland Ph D, “Stone Agers in the Fast Lane”) http://www.endfatigue.com/book_notes/Fftf_chapter_10.html

This viewpoint isn't at all unusual regarding the stereotyping of the so-called typical fibromyalgia patient. It's actually very much the norm, and the same psychosocially negative wording and phrasing which indicates personality and character flaws, and emotional/psychological dysfunction and disorder appear repeatedly in medical literature geared for the medical and social service professions. Watered down versions (containing much of the same loaded buzzwords and phrases) is typically found in literature published for patients and their loved ones. The only fibromyalgia book I've seen personally which is free of this negative stereotyped language and attitude regrading patients with FM/CFS is Dr. Dantini's book. His is the lone voice in the world of fibromyalgia book authoring who views and treats these patients with dignity, without belittling or demeaning them via tired, harmful, and archaic stereotyping.