The best known symptom of Chronic Fatigue Syndrome & ME (ME/CFS) is an unrelenting, persistent loss of energy that physicians call “fatigue.” However, the profound loss of energy experienced by ME/CFS patients is nothing like the fatigue most people experience at the end of a long day or following a strenuous workout. It cannot be relieved by rest or sleep. In fact, patients may awaken feeling just as fatigued as they did before they went to sleep.
The Centers for Disease Control (CDC) describes the fatigue of ME/CFS as “severe, incapacitating, and all-encompassing.” In fact, the fatigue people with ME/CFS experience is so severe that it significantly limits their ability to work, go to school, participate in social activities and take care of their own personal needs. The most severe cases can leave patients housebound or bedridden. ME/CFS patients describe feeling as if they have the flu all the time, a feeling of heaviness in their limbs, and low energy levels accompanied by a feeling of over-stimulation.
This loss of energy – as well as other symptoms – is exacerbated by exertion of any kind, mental or physical. (This is referred to as post-exertional malaise, or PEM.) The symptom exacerbation usually begins 12 to 48 hours after the exertion and requires an extended period of recovery, during which a severely ill patient may be completely unable to function. Post-exercise collapse or post-exertion exacerbation of the illness is what distinguishes ME/CFS from depression.
The hallmark of Chronic Fatigue Syndrome & Myalgic Encephalomyelitis is wide-ranging symptoms that wax and wane. These symptoms can affect any part of the body and any system, including the nervous system, the endocrine system, the digestive system, and the immune system. That is why ME/CFS is called a “multi-system” illness, and why fits into the category of neuroimmune illnesses – illnesses that primarily affect the immune system and the nervous system.
Healthy people also experience fatigue, muscle aches, digestive disturbances, and insomnia, as well as many other symptoms, but what marks ME/CFS symptoms is their severity and frequency. Patients with ME/CFS experience symptoms virtually daily, and to the point that they can become incapacitating.
Not all patients experience the same symptoms, and not all experience the same severity of illness. As with any other disease, symptoms can be mild, moderate or severe. Patients often rate themselves on a 1-10 scale, with 1 being bedbound, and 10 being fully recovered. In addition, there are three general levels of illness: mild, moderate, and severe.
Below are the primary symptoms of Chronic Fatigue Syndrome & Myalgic Encephalomyelitis.
ME/CFS Signs and Symptoms Checklist
[ ] Worsening of symptoms after physical or mental exertion (post-exertional malaise, or PEM)
[ ] Cognitive function problems
[ ] Attention deficit disorder (inability to concentrate)
[ ] Feeling “spaced out” or “cloudy,” “brain fog”
[ ] Calculation difficulties
[ ] Memory loss
[ ] Spatial disorientation
[ ] Word searching or saying the wrong word
[ ] Sleep disturbance, unrefreshing sleep
[ ] Flu-like malaise, feeling “sick all over”, or “poisoned”
[ ] Sore throat
[ ] Low-grade fever or feeling hot often
[ ] Low body temperature
[ ] Muscle and joint aches with or without “trigger points”
[ ] Headache
[ ] Changes in vision
[ ] Numbness or tingling sensations
[ ] Loss of balance, dizziness
[ ] Unusually vivid dreams, nightmares, or lack of dreams
[ ] Depression
[ ] Anxiety, panic attacks
[ ] Personality changes
[ ] Mood swings
[ ] Difficulty moving the tongue to speak
[ ] Tinnitus (ringing in the ears)
[ ] Paralysis
[ ] Severe muscle weakness
[ ] Difficulty walking
[ ] Blackouts
[ ] Photophobia (light sensitivity), and increased sensitivity to noise, smells, touch
[ ] Alcohol intolerance
[ ] Changes in taste, smell, hearing
[ ] Decreased libido, impotence
[ ] Muscle twitches
[ ] Severe premenstrual syndrome (PMS) or exacerbation of symptoms before and during period
[ ] Weight changes, usually loss followed by gain
[ ] Painful, swollen lymph nodes, especially on the neck and underarms
[ ] Abdominal pain, diarrhea, nausea, gas, irritable bowel
[ ] New allergic reactions to medicines, food, and other substances
[ ] Night sweats
[ ] Heart palpitations
[ ] Uncomfortable or frequent urination
[ ] Rash of herpes simplex or shingles
[ ] Flushing, rash
[ ] Hair loss
[ ] Chest pain
[ ] Dry eyes and mouth (sicca)
[ ] Cough, dry
[ ] Canker sores
[ ] Cold hands and feet
[ ] Shortness of breath
[ ] Temperature and weather sensitivity
[ ] Symptoms worsen when standing up (orthostatic intolerance)
[ ] Seizures, usually petit mal, but sometimes grand mal
Reprinted with the kind permission of Katrina Berne. Copyright © 2014 Katrina Berne
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