A rich melange of symptoms occurs in chronic fatigue syndrome (ME/CFS). Five core symptoms dominate (fatigue, post-exertional malaise, unrefreshing sleep, pain and cognitive problems) dominate but many others are found.
- In Their Own Words: Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms
- Dr. Berne’s Complete Chronic Fatigue Syndrome Symptom Checklist
- DePaul Symptom Questionnaire – Questionnaire developed specifically for ME/CFS
People with chronic fatigue syndrome (ME/CFS) experience unusual levels of fatigue or exhaustion after mild exertion. The Centers For Disease Control (CDC) calls the fatigue ‘severe, incapacitating, and all-encompassing” . Approximately 25% of people with chronic fatigue syndrome are house or bed-bound.
- Dig Deeper: Learn more about symptoms on Health Rising’s ME/CFS, FM and Chronic Pain Forums.
Post-exertional malaise (PEM) – The term ‘post-exertional malaise’ (PEM) was coined in an attempt to describe a unique kind of fatigue present in ME/CFS. It refers to symptom flareups after physical or mental exertion that can last for days to weeks. Exercise tests suggest many people with ME/CFS have a unique metabolic deficit that prevents them from regularly engaging in much physical activity.
Studies indicate the disease is amongst the most functionally disabling known. People with ME/CFS are as or more functionally limited than people with type II diabetes, multiple sclerosis, congestive heart failure and end-stage renal disease. They also have a lower quality of life than people with cancer, stroke, renal failure and schizophrenia. Twenty-five percent are home or bed-bound. One study, found that only an astonishingly low 13% were employed full-time.
Unique Types of Fatigue Present
A study which identified five different types of fatigue in ME/CFS, only one of which was found in the healthy population, suggested unique types of fatigue are present in the disease.
- ‘Post-exertional fatigue (or malaise)’ – occurs after physical or mental exertion; it is considered a hallmark symptom of this disease.
- ‘Brain fog’ – involves having difficulty with words and concentration; it is considered a hallmark symptom of this disease.
- ‘Wired But Tired fatigue’ – characterized by low energy levels accompanied by a feeling of over stimulation or being unable to relax, feeling ‘wired and tired’ is common in chronic fatigue syndrome.
- ‘Molasses Fatigue’ – is characterized by a feeling of heaviness in the limbs.
- Flu-like fatigue – similar to what people who have a cold experience.
Problems Getting a Good Nights Sleep
Almost all chronic fatigue syndrome (ME/CFS) patients experience unrefreshing sleep and/or reduced or increased levels of sleep. Sleep issues can range from insomnia, to early waking, to difficulty achieving deep sleep. Sleep studies focusing on traditional sleep issues have had mostly unremarkable findings but recent studies employing measures of autonomic nervous functioning suggest that system is intimately involved in sleep and other issues.
People with ME/CFS often report more difficulty with thinking including slowed understanding, trouble finding or saying words, trouble with writing, reading and mathematics, inability to keep track of things, short term memory problems and poor concentration. Studies indicate that problems with ‘executive functioning’ (working memory, planning, organizing) are particularly affected.
Widespread muscle and joint pain, tension headaches and shoulder and neck pain are common. Migraines without aura are common. Upper body pain is particularly common. Studies indicate that lower pain thresholds, particularly after exercise, are present and allodynia can be found.
Autonomic Nervous System Symptoms
Many autonomic nervous system symptoms are found including difficulty standing (orthostatic intolerance), rapid heartbeat and poor blood pressure regulation (particularly during standing) that causes dizziness, nausea, fatigue, headaches, sweating, pallor, mottling in lower limbs, etc.; palpitations, breathing dysregulation (breath holding, irregular breathing, exercise induced shortness of breath), irritable bowel syndrome (constipation, diarrhea, cramping, bloating and/or nausea), visual disturbances, burning sensations, chest pain…
Hypersensitivity to light, sound, odors, vibration, speed, reduced multi-tasking ability, difficulty making decisions, motor overload – increased clumsiness, etc. when fatigued, dizziness, numbness, tingling, nausea are often found.
Vertigo, loss of depth perception, inability to follow quickly moving objects, etc. are common.
Poor coordination, effortful movement, difficulty with everyday activities such as brushing one’s teeth, dialing the telephone, etc.
Hormonal Type Symptoms
Increased or reduced body temperature, hot/cold feelings, intolerance of weather extremes, feverishness, sweating episodes, weight gain or weight loss, anxiety or panic attacks, alcohol intolerance often occur. Studies suggest gynecological issues are common in ME/CFS.
Immune System Symptoms
Sore throat, tender lymph nodes, fever, muscle and joint pains, new sensitivities to food, drugs and/or chemicals are common. Once thought to be a hallmark of this disorder, studies have indicate that enlarged lymph nodes are not common.
Irritability, depression and/or anxiety commonly occur in chronic diseases and are increased in ME/CFS as well. Mood disorders are not increased in people with ME/CFS before they become sick.