Katrina Berne, PhD

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Lists of Symptoms of CFIDS

From Katrina Berne,Ph.D., Running on Empty, The Complete Guide to CFS (CFIDS), 1995 pp. 57-60.

The following list of symptoms is grouped into three general categories with approximate percentages of PWCs [person with CFIDS, or CFS] who experience them. These percentages are based upon information reported by Drs. Bell, Cheney, Fudenberg, Goldstein, Jessop, Komaroff, Peterson, and two surveys (Kansas City and Phoenix). Grouping symptoms into categories is done for convenience. It is likely that all symptoms are related to neuroimmune dysfunction.

General or Physical Symptoms:

  • Fatigue, often accompanied by nonrestorative sleep, generally worsened by exertion: 95-100%
  • Nausea: 60-90%
  • Irritable bowel syndrome (diarrhea, nausea, gas, abdominal pain): 50-90%
  • Chronic sore throat: 50-90%
  • Fevers/chills/sweats/feeling hot often: 60-95%
  • Muscle and/or joint pain, neck pain: 65-95%
  • Bladder/prostate problems, frequent urination: 20-95%
  • Low blood pressure: 86%
  • Recurrent illness and infections: 70-85%
  • Malaise: 80%**
  • Heat/cold intolerance: 75-80%
  • Painful and/or swollen lymph nodes: 50-80%
  • Systemic yeast/fungal infections: 30-80%
  • Fungal infection of skin and nails: 71%
  • Weight gain: 50-70%
  • Increased/severe PMS: 70%
  • Swelling, fluid retention: 55-70%
  • Shortness of breath: 30-70%
  • Subnormal body temperature: 65%**
  • Severe allergies: 40-60%**
  • Sensitivities to medicines, inhalants, odors, and foods: 25-65%
  • Difficulty swallowing: 55-60%
  • Heart palpitations: 40-60%
  • Sinus pain: 56%
  • Rash or flushing of face: 35-45%
  • Chest pain: 40%
  • Hair loss: 20-35%
  • Eye pain: 30%**
  • Pressure at the base of the skull: 30%
  • Weight loss: 20-30%
  • Tendency to bruise easily: 25%
  • Vomiting: 20%
  • Other general symptoms reported: Endometriosis; dryness of mouth, eyes; pressure sensation behind eyes; frequent canker sores; periodontal disease; pain in teeth, loose teeth, and endodontal problems; cough; TMJ syndrome; Mitral valve prolapse; Carpal tunnel syndrome; Serious cardiac rhythm disturbances; Pyriform muscle syndrome, causing sciatica; Impotence; Thyroid inflammation; Hypoglycemia or hypoglycemia- like symptoms; Swelling of nasal passages

Neurological/Central Nervous System-related Symptoms:

  • Confusion; inability to think clearly: 75-100%
  • Concentration/attention deficit: 70-100%
  • Sleep disorder/disturbance (insomnia, unrestorative sleep, unusual nightmares): 65-100%
  • Muscle weakness: 85-95%
  • Headache: 75-95% (daily headache: 50%)
  • Memory problems (especially short-term memory): 80-90%
  • Photosensitivity: 65-90%
  • Disequilibrium, spatial disorientation, dizziness, vertigo: 60-90%
  • Spaceyness, light-headedness: 75-85%
  • Muscle twitching, involuntary movements: 55-80%
  • Aphasia and/or dyscalculia: 75-80%
  • Alcohol intolerance: 45-75%**
  • Seizure-like episodes: 70%** (seizures: 2%)
  • Coordination problems/clumsiness: 60%
  • Paresthesias (numbness, tingling or other odd sensations in face and/or extremities): 25-60%
  • Visual disturbance (scratchiness, blurring of vision, "floaters"): 45-55%
  • Episodic hyperventilation: 40-45%
  • Fainting or blackouts: 40%
  • Strange taste in mouth (bitter, metallic): 25%
  • Temporary paralysis after sleeping: 20%
  • Earache: 20%
  • Other symptoms reported: decreased libido; hallucinations; alteration of taste, smell, hearing; tinnitus

Emotional/Psychological Symptoms:

  • Anxiety: 70-90%
  • Mood swings, excessive irritability, overreaction: 70-90%
  • Depression: 65-90%
  • Personality change: 55-75%
  • Panic attacks: 30-40%

These figures represent a range of percentages of reported symptoms in different studies. Patients do not necessarily experience these symptoms all the time. In most cases only one-third to one-half of those reporting individual symptoms indicated that they experienced the symptom at all times. In my survey of the Phoenix area group, figures were compiled to indicate the average total number of symptoms experienced all of the time (11 symptoms) and the average total number of symptoms experienced by each patient some of the time (18.6 symptoms).

PWCs may experience symptoms other than those listed above. Some of the symptoms reported may have been experienced prior to the onset of CFIDS in a milder or different form. Additionally, other illnesses or conditions may exist simultaneously with CFIDS, complicating the diagnostic problems and often causing lack of clarity as to which symptoms are attributable to which conditions.

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