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A. Definitionsnavigator

  1. Refers to syndromes characterized:
    1. MORE by symptoms, suffering, and disability
    2. THAN by disease-specific, demonstrable abnormalities of structure or function
  2. Variations on behavioral disorders, usually with environmental stimulus
  3. Characteristics of patients with FSS
    1. Very explicit disease attributions for their symptoms
    2. Resist information that contradicts these assertions
    3. Sense of assertiveness and embattled advocacy with respect to disease etiology
    4. Often devalue or dismiss medical, scientific, and epidemiologic evidence which conflicts with their beliefs
    5. Patients are commonly refractory to treatment of symptoms (versus "underlying" cause)
  4. Complicating Factors
    1. Many of these syndromes have significant political and social standing
    2. Legal and compensation issues are often prominent
  5. Unclear if these are distinct syndromes, or if there is one or very few underlying cause(s) [3]

B. Characteristicsnavigator

  1. Syndrome usually includes:
    1. Headache, musculoskeletal pain, fatigue
    2. Gastrointestinal distress
    3. Concentration and memory difficulties
    4. Sleep problems
  2. symptoms are diffuse, nonspecific,
  3. symptoms reported occur in healthy populations at about same rate as in syndrome
  4. FSS may co-occur with psychiatric conditions
  5. FSS may be a subconscious reaction to stress
  6. Diagnoses of exclusion
  7. Possible Etiologies
    1. Heightened perception of body sensation and/or
    2. Unidentified group of neurotransmitter or hormonal disorders in which levels are normal but response is exaggerated

C. Syndromes Classified as FSSnavigator

  1. Multiple chemical sensitivity
  2. Sick building syndrome
  3. Repetition stress injury
  4. Chronic whiplash
  5. Chronic Lyme Disease / Lyme Syndrome [4]
  6. Silicone Breast Implant Side Effects
  7. Candidiasis Hypersensitivity
  8. Gulf War Syndrome
  9. Food allergies
  10. Mitral valve prolapse (MVP) symptom complex
  11. Hypoglycemia
  12. Possible FSS
    1. These conditions share phenomenologic and psychosocial characteristics of FSS
    2. Chronic Fatigue Syndrome (CFS)
    3. Fibromyalgia (FM)
    4. Irritable Bowel Syndrome (IBS)

D. Psychosocial Attributes of FSS and Patientsnavigator

  1. Discrepancy between scientific knowledge about FSS and public perception of FSS
  2. Patients may perceive themselves as victims by of putative FSS causal factor
  3. Quasi-scientific books published by lay press often imply "conspiracy" to suppress evidence about FSS
  4. Patients quickly assume "sick role"
  5. Patients become aggressive self-advocates, particularly when clinicians are skeptical

E. Historical and Epidemiological Perspectivenavigator

  1. Conditions comprised of somatic symptoms typical of an FSS have arisen for at least last 300 years
  2. Outbreaks begin with small number of cases among individuals in physical proximity to one another - work, school, military units
  3. Epidemiological analysis suggests infectious agent, transmission often later found to occur along lines of interpersonal communication
  4. Potential disease source may include infection, mechanical injury, chemical exposure
  5. Prevalence rates vary from one population to another, even when exposure is equivalent
  6. No dose response curve can be firmly established
  7. Historically, incidence increased until medical community found no infectious agent, pathogenic toxin, or physical vector which caused the condition
  8. When no cause could be established, the incidence declined
  9. Examples:
    1. Neurasthenia
    2. Chronic brucellosis
    3. Railway spine
    4. Soldier's heart
  10. Pattern of falling incidence after medical community reaches conclusion has changed in 20th century
    1. Patients are more informed and assertive medical consumers
    2. Patients increasingly question healthcare professional's judgment and motives
    3. Characteristics of FSS, above, describe the attributes of syndrome in 20th century

F. Evaluating the Patient navigator

  1. Rule out presence of diagnosable medical disorders
    1. Limit testing and referrals for consults with specialists
    2. Testing exposes patients to iatrogenic risk
    3. Testing and consults confirm patient perception of having a serious medical problem
    4. This fosters sick role
  2. Negative test results provide little assurance, because patients feel ill
  3. Rule out psychiatric disorders, especially:
    1. Anxiety
    2. Panic disorders
    3. Major depression
  4. Likelihood of a psychiatric disorder increases linearly with number of somatic complaints the patient reports
    1. Patients reporting pain at 2 sites have 5X prevalence of major depression
    2. Patients reporting pain at 3 or more sites have 8X prevalence of major depression
  5. If psychiatric disorder detected, emphasize relationship between body pain and psychiatric condition as one of "amplification"
  6. Biochemical derangement in brain alters physical sensations as well as mood
  7. Symptoms of FSS may improve with pharmaceutical treatment of psychiatric disorder.
  8. Build collaborative relationship with patient

G. Building A Collaborative and Trusting Relationshipnavigator

  1. Physician must make effort to acknowledge and legitimize patient's suffering despite ack of definitive biomedical explanation
  2. Make restoration of daily functions the treatment goal
    1. Patients should be encouraged to do as much as they can
    2. This is because the activity itself will have therapeutic value
    3. Avoid making the goal a "cure", because this will be very long and difficult
  3. Prescribe exercise - use prescription pad to write out, augment with handout
  4. Prescribe strict to adherence to basic sleep hygiene program - write prescription and augment with handout
  5. Prescribe return to work
    1. Return to work should be gradual only if patient requires slower transition
    2. Delay prescription use here so that patient is not intimidated
    3. However, eventually written prescription to return to work may be helpful
  6. Provide limited reassurance
    1. "You're fine" will not help FSS patients, because they don't feel fine
    2. The patient's suffering and disability must be acknowledged
  7. Support the patient's sense of self-efficacy


References navigator

  1. Henningsen P, Zipfel S, Herzog W. 2007. Lancet. 369(9565):946 abstract
  2. Barsky AJ and Borus JF. 1999. Ann Intern Med. 130(11):911
  3. Wessely S, Nimnuan C, Sharpe M. 1999. Lancet. 354(9182):936 abstract
  4. Feder HM Jr, Johnston BJ, O'Connell S, et al. 2007. NEJM. 357(14):1422 abstract