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.

Beware The Fibromyalgia Diagnosis Part Two
Topic: Medical Care

Where Did Fibromylagia Come From?

Fibromyalgia used to be known as Rheumatism, a term more commonly used in the days of yore which referred to a rheumatological condition of achy muscles and joints with fatigue. In the mid-20^th century the name was changed to Fibrositis. When it was later changed to Fibromyalgia the definition of the illness changed somewhat and its list of symptoms has greatly broadened and expanded over the years. The current list of symptoms and secondary ailments attributed to either being 'caused' by Fibromyalgia or being a co-condition to it still continues to grow. Fibromyalgia's primary symptoms include widespread muscle and joint pain with chronic fatigue, daily or frequent cognitive and memory impairments (brain fog), and a pair of sleeping disorders- insomnia, and the inability to reach or stay in restorative stage 4/delta wave deep sleep.

The secondary symptoms lists now includes: various digestive problems; irritable bowel syndrome; irritable bladder/interstitial cystitis; edema/fluid retention syndrome; dry eyes and dry mouth (Sicca Syndrome); gynecological problems in women; erectile dysfunction in men; painful sexual intercourse for both sexes, but this occurs much more often with women; chronic headaches; yeast infections/intolerances; depression and anxiety; restless leg syndrome; heart palpitations; dizziness and lightheadedness; balance problems; sinus problems/environmental allergies; delayed food allergies and intolerances; hypoglycemia; Raynaud's phenomenon (cold hands and feet); tingling and numbness of the limbs (neuropathy); mitral valve prolapse; thyroid disorders; endometriosis; TMJ; and various other ailments. The problem with this growing list secondary symptoms is these same conditions and symptoms also occur in many people on their own and have nothing whatsoever to do with a diagnosis of fibromyalgia. Many of these symptoms can also be associated with other illnesses and diseases, including those with symptoms similar to fibromyalgia, and that includes illnesses that are either occasionally or frequently mis-diagnosed as being fibromyalgia.

Some doctors and medical researchers make little or no distinction between Fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome/Myalgic Encephalomyelitis (CFIDS/ME) an autoimmune condition caused by chronic viral infections which is also known as Chronic Fatigue Syndrome. Others in the medical profession view CFIDS/ME and Fibromyalgia as being separate, yet related conditions.

Fibromyalgia- The Medical Land of Confusion

Some in the medical community view fibromyalgia as a rheumatological disorder and others view it as a neurological one. A few say it is an autoimmune condition, but that premise has largely fallen out of favor. Some say the condition is mainly caused by the prolonged sleep disorders. Others view its cause as a combination of dysfunctions involving the thyroid, adrenal, and pituitary glands and/or the hypothalamus. Some view the problem as the retention of too much phosphate in the body due to a genetic defect. Some say it is caused by or is related to Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder; while others view it as a form of Post Traumatic Stress Disorder. There is also a growing school of thought within the medical community which believes some/many/most fibromyalgia patients experienced physical and/or sexual abuse either during childhood or adulthood, and their illness is a psychosomatic response to the prolonged stress related to being victims of abuse. A few out there try to link fibromyalgia to the mental illnesses Disassociative Disorder/Multiple Personality Disorder via these physical/sexual abuse traumas. A few believe in a genetic link between fibromyalgia and autism. Some believe fibromyalgia is a form of Dysautomia- an autonomic nervous system dysfunction disorder. Others claim the cause is completely unknown (and some think the cause is irrelevant). Unfortunately, these conflicting views are the ones often most strongly favored in the medical community and bear the strongest influence regarding patient treatment and care.

Typically drug treatment involves taking antidepressants, anticonvulsants, pain medications, neuropathy medications, and possibly anti-anxiety drugs. In addition, fibromyalgia patients, depending upon both their doctors' viewpoints regarding illness treatment and the types of coverage their health insurance plans offer for fibromyalgia, may undergo physical therapy aimed specifically geared towards fibromyalgia patients, and/or may go to pain management clinics. They may be treated with various forms of therapeutic massage, and/or with chiropractic treatments. They are encouraged to take up a gentle lower impact exercise routine, which may include T'ai Chi or yoga exercises.

Other treatments for fibromyalgia (sometimes depending on whose theory you are following) may possibly involve:

Guifenesein Therapy- This treatment involves taking twice-daily doses of Guifenesin, an expectorant found in cold medicines, to rid the body of excess phosphates. This protocol also involves completely avoiding products which contain salicylates, both in oral form (Aspirin and Pepto Bismol, for example), and avoiding the use of skin care products that contain salicylic acid, including certain natural botanical extracts. A lower carb diet is also recommend with this protocol.

Cognitive Behavioral Therapy- This short-term psychotherapy helps patients learn to deal with the emotional aspects of living with chronic illnesses and to help them feel better about themselves as people living with chronic illness. It involves changing one's thinking and viewpoints regarding his/her illness and its life-impacting symptoms.

“Cognitive Behavioral Therapy for Fibromyalgia” a patient study article by Robert Bennett and David Nelson can be found here: www.myalgia.com/Treatment/Bennett%20Nelson%20CBT%202006.pdf

Cranialsacral Therapy- From Wikipedia: (links within text removed) “A craniosacral therapy session involves the therapist placing their hands on the patient, which they say allows them to tune into what they call the craniosacral system. By gently working with the spine, the skull and its cranial sutures, diaphragms, and fascia, the restrictions of nerve passages are said to be eased, the movement of cerebrospinal fluid through the spianl cord can be optimized, and misaligned bones are said to be restored to their proper position. Craniosacral therapists use the therapy to treat mental stress, neck and back pain, migraines, TMJ Syndrome, and for chronic pain conditions such as fibromyalgia.”   http://en.wikipedia.org/wiki/Cranial-sacral_therapy

There is some skepticism and controversy regarding the use and effectiveness of this treatment that is not just limited to its use for fibromyalgia patients.

Regulating Dopamine Levels- Rheumatologist Dr. David Dryland has developed a protocol to treat fibromyalgia based upon the viewpoint that fibromyalgia is the result of a decrease in levels of the neurotransmitter dopamine. His treatment involves off-label use of the drugs Mirapex and Requip to regulate dopamine levels. Mirapex and Requip are used to treat restless legs syndrome and Parkinson's disease, Parkinson's being a disease involving a decrease in dopamine levels.

 

Support Groups- Fibromyalgia patients are very strongly encouraged to bond with fellow fibromyalgics through either or both internet-based and real world local support groups, more so than patients who live with other chronic illnesses. Emotional bonding and support with fellow fibromites, and other emotional based 'issues' plays a much greater role within the concept of 'healing' for fibromyalgia patients. The number of online forums and message boards and all those patients posting to these fibro forums very much eclipses the number of forums (and patients) who focus on other illnesses and diseases. The sheer number of patients, and the growing number of newly diagnosed fibro patients who are now joining the “oldbies” at those cyber message boards, indicates just how much of a fad the fibromyalgia diagnosis has become.

Medical Marijuana- While it is more often prescribed for cancer patients, AIDS patients, MS patients dealing with severe pain, and the like; a few physicians will prescribe medical marijuana to their fibromyalgia patients although this practice is quite controversial.

Long-term Psychotherapy/Psychiatric Care- It's not usual to hear that someone who has been diagnosed with fibromyalgia is either in therapy with a psychologist; or even more common, is seeing a psychiatrist who has diagnosed the patient with, and is treating him or her with psychotropic medications for: depression, and/or anxiety, and/or ADD/ADHD, and/or Obsessive Compulsive Disorder, and/or PTSD. In at least one state, Fibromyalgia is listed as being a psychiatric disorder instead of a rheumatological one with that state's SSA Disability program. Hence is such states the primary care physician who may be assigned to the disabled patient and whose medical assessments, opinions and treatment plans counts most when it comes to that disabled patient's status and care via his/her Disability case workers is often a psychiatrist, not the patient's rheumatologist, or his/her general family practice doctor or whomever else the patient is receiving medical care from on a regular basis. All of these realities should give anyone who receives the fibromyalgia diagnosis themselves or who has a loved one who recently received this diagnosis pause. This is a glaring Patient Beware red flag.

Beware The Fibromyalgia Diagnosis Part One
Topic: Medical Care

Fibromyalgia is the current fad diagnosis for anything and everything that ails people, most especially women aged twenty-something to fifty-something. Any patient should beware when a doctor tells them the cause of their symptoms/illness is “fibromyalgia”.

Fibromyalgia isn't a distinctive illness, and it's not a disease; rather it's a Syndrome- a cluster of symptoms. The problem with fibromyalgia is its symptoms of chronic fatigue, widespread muscle and joint pain, and all the rest mimic various illnesses, and for good reason. Fibromyalgia is really a catch-all diagnosis for multiple medical conditions who present with similar symptoms.

In this day and age of managed healthcare, and with one-third of the US population either medically uninsured or underinsured, a catch-all diagnosis like fibromyalgia becomes a convenient money-saver for the medical insurance industry as it cancels out the need to run all those pesky and pricey medical tests which can tell doctors what is really wrong with their patients. Also, fibromyalgia is currently treated quite cheaply- with popular antidepressants, pain and sleep medications; a far cry price-wise from some of the long-term therapies needed if say, a patient's “fibromyalgia” is really late stage/chronic Lyme disease or is caused by chronic viral infections which require years of medication therapy involving either doses of multiple antibiotics (some given intravenously) or anti-viral medications, respectively.

 

Fibromyalgia: The “Disease” of Passive Victimhood

Fibromyalgia literature which is meant for both patient and physician consumption is filled with harmful psycho-babble and patient psychosocial profiling which paints fibromyalgia patients in a negative and harmful light. It often portrays them as being the “victims” of their own negative and self-defeating behaviors. In addition, supposedly many of these patients have been victimized, traumatized and were turned into passive doormats by the people in their lives, often starting from childhood. This kind of psychosocial stereotyping is certainly not in these patients' best interests and is simply not true personality- and psychosocial history- wise for most of them.

Spend some time perusing the fibromyalgia books at your local bookstore or library, and spend some time reading very carefully through some of the major fibromyalgia support organizational and fibro-expert physician websites and some of the poorly conducted studies supposedly linking fibromyalgia to abuse trauma. What you'll find, especially in the books and on certain websites, is commentary stating the 'suspected' causes of fibromyalgia are basically psychosomatic in origin and are either related to the emotional traumas of childhood physical and/or sexual abuse and neglect, or from being raped as an adult, or being the victim of adulthood domestic violence, or having a job-stress related burn-out disorder, or being an unhappy people-pleaser who burns the candle at both ends until it leads to illness, or being a Super Type A personality who takes on too much work and responsibility, or being too ambitious with career and educational goals; all of which supposedly causes adrenal-burnout that triggers fibromyalgia. Fibromyalgia patients are also supposed to be perpetually anxious, super-sensitive and super-vigilant people whose bodies are incapable of relaxing and are always stuck in a tense fight-or-flight mode.

The two exceptions to this mindset (sort of) involves fibromyalgia patients whose symptoms appear after suffering serious body trauma due to automobile, work related and other types accidents or injuries which cause nerve and tissue damage, especially to the back and neck (Post Traumatic Fibromyalgia); and with patients who suffer with other conditions at the same time that also cause similar symptoms to fibromyalgia aka so-called co-conditions like Lupus and Rheumatoid Arthritis. These patients are labeled as having Secondary Fibromyalgia.

All other fibromyalgia patients are defined as having Primary Fibromyalgia.

To a much lesser extent, negative behaviors like smoking, drinking too much alcohol, using illegal drugs, and poor diet are listed as mitigating factors for developing fibromyalgia. Actually these same behaviors are often used to scapegoat people who develop various chronic illnesses via the ignorant and unrealistic belief that everyone is destined to be perfectly healthy at all times until they reach old age, unless they do something 'wrong' like smoke, drink, abuse drugs, or pig out on junk food and fast food, which screws up their otherwise perfectly healthy bodies.

Aside from the fibro patients whose symptoms are triggered by body trauma caused by accidents (the cause of which isn't actually explained by most so-called fibromyalgia experts either) or is found alongside another illness like Lupus (the distinctions between a Lupus/Secondary Fibro patient subset and the problem simply being a really, really painful case of Lupus for certain patients isn't clear) all other newly diagnosed fibromyalgia patients are discouraged from asking questions about the 'whys' behind their illness. They are discouraged from looking for a cause that could potentially be cured, or at least better managed with the true and proper medications. Instead they are encouraged to passively accept their new-found status as fibromyalgia patients- aka fibromites or FMers. They are encouraged to work through the “Five Stages of Grief” and learn to accept their lot in life and join fibro support groups; take their antidepressant, anti-anxiety and pain drugs like good little girls and boys; and are told to consider going into or are placed in psychotherapy or cognitive behavior therapy. And if they have good health insurance coverage, they'll be able to see a physical therapist and/or a pain management specialist. And they'll spend their lives living in limbo wondering why their bodies don't work right anymore and why they don't ever get better. They'll be told their illness isn't progressive and isn't harmful and doesn't actually do damage to their bodies, so they shouldn't be alarmed. But some will become sicker and more disabled with time, and will have no answers about the true nature of their illnesses.

Cure Unknown by Pamela Weintraub
Topic: Book Reviews
“Cure Unknown: Inside the Lyme Epidemic” by Pamela Weintraub, St. Martin's Press; New York, New York;  2008. 

“Cure Unknown” is another must read book about the real science, real required medical care for patients, and the ongoing research behind Lyme Disease and its related tick-born co-infections and how it all has been greatly obscured and even buried due to politics, conflicts of interest, and narrow-minded thinking on the part of some well-connected doctors and medical researches who sadly have too much clout within the medical establishment and the government. This has been done at the expense of Lyme patients, their families and the devoted doctors and researchers on the front lines of Lyme patient care who know some uncomfortable truths about this not fully understood and very stubborn bacterial disease.

Ms. Weintraub is another on the list of journalist-patients to research and write about her and her family's illness after suffering for years with inadequate care due to the fact efforts are being made to stifle the true number of Lyme cases in this country and thus deny sufferers full and proper medical treatment. Lyme is the only disease in this country where it is deemed fully acceptable to deny patients much-needed medical treatment to make them well, or to at least slow down the progression of the more stubborn cases of the disease. It is the only disease where governmental bodies have placed limits on the duration of antibiotic therapy and where state medical boards actually attempted to revoke, or did revoke, the medical licenses of doctors who did their jobs- treating their Lyme patients for as long as it took them to get well. 

This book is also important reading, and food for thought, for anyone involved in the current explosion in the diagnosis of “fibromyalgia”, whether they are working in the fields of medicine or social services, or they are a fibro patient or the friend or relative of someone diagnosed with fibro, especially if they have doubts or questions regarding the accuracy of the fibromyalgia diagnosis; as fibromyalgia, (formerly known as muscular rheumatism and later fibrositis) had its illness definition and symptoms list greatly expanded to include symptoms often found in late-stage and chronic Lyme (sometimes erroneously called Post Lyme Syndrome). Fibromyalgia has become such a fad diagnosis of late that it seems to be a catch-all label which covers a broad range of medical conditions- including Lyme disease- illnesses whose main symptoms include chronic fatigue, and widespread muscle and joint pain.  A somewhat similar occurrence has happened on lesser scale with late-stage and chronic Lyme being incorrectly labeled as Chronic Fatigue Syndrome, Multiple Sclerosis, or Amyotrophic Lateral Sclerosis (ALS a.k.a Lou Gehrig's Disease).  

The Myth of Chronic Illness as a a??Blessinga??
Topic: Life With Chronic Illness

Every so often I read essays online about this, written by chronically ill people, and I know this has been a chapter subject in at least one book on living with chronic illness- the absurd notion of chronic illness as a “blessing”, or a 'blessing in disguise'.

The writer, usually female, is still able to live a middle class lifestyle despite her illnesses. She suffers from one or more chronic ailments of the invisible illness variety, but she is lucky enough to have health insurance coverage either privately through her spouse or through Disability, and has decent and caring doctors who do a good job at manging her conditions. She is happily married to a nice, understanding and patient guy who is earning a good income- hence she doesn't really need to work, so her inability to do so anymore is a moot point. She has amazingly understanding and supportive family members and friends, and a large extended illness support system. And she gushes about how “blessed” she and everyone else with chronic illnesses is. To her, chronic illness gives one 'proper prospective' of what really matters in life, and supposedly all that matters in life is having great interpersonal relationships. It's not about the practical issues like money, jobs/careers, raising a family and/or caring for aging family members despite being chronically ill, having decent quality housing, having access to consistent and decent quality medical care, being able to own and maintain a reliable car if one can drive, being able to save for the future, having more of a purpose in life than playing at being the blissed-out yet ill housewife (if one is married). She claims that illness is really a blessing in disguise. If she's a religious type, life with chronic illness will be a spiritual matter that's part of a greater 'Divine Plan'.

Oh, please. Get real.

The reality is, especially here in the United States, developing life altering/disabling chronic illnesses (especially is you're single and/or female) often equates moving from a stable middle class or working class lifestyle to the world of poverty and potential homelessness, and leads to an overall diminished quality of life. People who are able to remain in the workforce often get stuck in job ruts as they need to stay with an employer where they can still get health care coverage, because they are uninsurable on their own. For those unable to work in the traditional workplace, transitioning to a telecommuting job is often difficult at best. Getting on Disability is extremely difficult, and many chronically ill/disabled people who very much need Disability coverage never get it. Instead they either wind up living on welfare until the welfare reform term limits kick in, or they rely on their spouse, lover, family or friends for housing and financial support. Some wind living in welfare hotels, or end up as members of the disabled homeless population, living in homeless shelters or out on the streets.

Housing for the disabled apartment renter may mean relocating from their nice, safe and clean neighborhood into a public housing apartment building located in a dirty, dilapidated, drug and crime infested neighborhood where burglaries, car thefts and break-ins, muggings, rapes and shootings are the norm. State Medicaid programs are being gutted constantly, so far too many chronically ill/disabled people wind up with extremely limited or no access to decent quality medical care. Some community hospital clinics are so awful, have such substandard and poor quality care, that their patients would be better off being treated by their local veterinarians.

Love relationships and marriages may break up when one partner becomes chronically ill, and the healthy one loses the ability to handle the stress and strain associated with caring for their ill partner. Personal and professional goals, dreams and ambitions often go unfulfilled. Family members and friends often don't 'get it'...and some will never understand what life with chronic illness is like, regardless of how many times you try to explain your daily struggles and hardships to them.

Where is the “blessing” in that?

Patients Like Me
Topic: Life With Chronic Illness

Patients Like Me http://www.patientslikeme.com was recently profiled on the CBS Nightly News with Katie Couric and has been the subject of print news articles.

This website is a place where patients with certain chronic diseases, including progressive illnesses- some fatal- can chart their symptoms, illness progression, medical treatments and other means of coping with their conditions. The information they provide, including which medications they use and how well they help are shared with pharmaceutical companies and medical researchers, minus the site members' personal real life information- real name, location, etc.

 

Members can track progress of others members, and see which medications and therapies are the most helpful for the members of their illness community. There are sections that list the major and lesser symptoms of each illness and track the number of members who report each symptom. There is a section devoted to medical research studies and news as well. The Patients Like Me site has a limited selection of chronic conditions at present, but will be expanding to cover more illnesses.