The best-known symptom of Chronic Fatigue Syndrome & Myalgic Encephalomyelitis (ME/CFS) is fatigue. However, the fatigue of ME/CFS is nothing like the fatigue most people experience at the end of a long day or following a strenuous workout. 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.
A key component of ME/CFS fatigue is post-exertional malaise. This is extreme, prolonged exhaustion and a worsening of symptoms following physical or mental exertion. The symptom exacerbation usually begins 12 to 48 hours after the exertion and requires an extended period of recovery.
Other fatigue characteristics ME/CFS patients describe include feeling like 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.
Another defining factor of the fatigue of Chronic Fatigue Syndrome & Myalgic Encephalomyelitis is that it is not relieved by sleep. Patients may awaken feeling just as fatigued as they did before they went to sleep.
Because getting good, deep, refreshing sleep is essential for the body to replenish itself, healthcare professionals will often address sleep issues first. If sleep problems can be corrected, fatigue symptoms should begin to improve as well.
Under normal circumstances, the immune system is our defense system protecting us from outside invaders. However, researchers have uncovered evidence of several immune system abnormalities that may contribute to ME/CFS. An impaired immune system weakens the body's ability to fight off infection and can cause symptoms such as:
- Sore throat
- Allergies to food, drugs, and/or chemicals
- Muscle and/or joint pain
Depression, anxiety, irritability, mood swings, personality changes and panic attacks are all symptoms that may accompany Chronic Fatigue Syndrome & Myalgic Encephalomyelitis. They do not cause ME/CFS; in fact, they are more likely to be the result of it.
A 1999 study by Dr. Leonard Jason of DePaul University revealed that 60 percent of those diagnosed with chronic fatigue syndrome had never experienced a psychiatric illness, such as depression, before the onset of the illness.
Despite this study and multiple other studies proving ME/CFS to be a very real physical illness, some patients still have to cope with healthcare professionals who persist in thinking it is primarily a psychiatric problem. However, the tide is turning.
The CFIDS Association's public awareness campaign, funded by the CDC, is bringing ME/CFS to the forefront. More and more healthcare professionals are becoming familiar with ME/CFS and learning how to treat it.
If you have symptoms of depression, anxiety, or any of the other mood disorders mentioned, be sure to talk with your doctor about it. Left untreated, these symptoms can actually exacerbate many of your other symptoms. (For example, anxiety causes stress; and stress contributes to pain, insomnia, increased fatigue, digestive problems, etc.)
The endocrine system is an integrated group of small organs that release and regulate hormones in our bodies. Researchers have discovered a number of endocrine abnormalities in ME/CFS patients, leading to symptoms such as:
- Low-grade fever or below average body temperature
- Heat and/or cold intolerance
- Weight gain or loss not related to changes in diet
- Alcohol intolerance
- Hot flashes or sweating episodes not related to menopause
Most (but not all) Chronic Fatigue Syndrome & Myalgic Encephalomyelitis patients report having some degree of pain. Types of pain include:
According to Dr. David Bell, the chronic pain of ME/CFS is rarely treated adequately. Since there are so many different symptoms with ME/CFS, pain is often given a low priority. So if pain is one of your worst symptoms, be sure to make that clear to your doctor.
- Muscle pain
- Joint pain
- Jaw pain (TMJ)
- Eye pain
- Abdominal pain (usually from irritable bowel syndrome)
- Lymph node tenderness
Chronic Fatigue Syndrome & Myalgic Encephalomyelitis specialists agree that getting a good night's sleep is essential and most say inadequate sleep is the first symptom they treat. Many of the ME/CFS symptoms - fatigue, body aches and pains, headaches, depression, irritability, digestive problems - are also the classic symptoms of sleep deprivation.
That's not to say ME/CFS is simply a sleep disorder; there's much more to it than that. But it's clear that unrefreshing sleep does make the symptoms worse. Conversely, correcting the sleep problems will usually result in symptom improvement.
Your doctor may ask you to have a sleep study done to determine whether you have sleep apnea. If you do, using a CPAP (Continuous Positive Air Pressure) machine when you sleep may be all you need. If you don't have sleep apnea, your doctor may give you a prescription for an antidepressant (which can help improve sleep), or a medication specifically designed as a sleep aid.
If you would rather not take prescription drugs, talk to your doctor about taking an herbal supplement like melatonin, valerian root or GABA. In addition to medications or supplements, it's important for you to develop good sleep habits.
Many patients say impaired cognitive functioning is the worst part of ME/CFS. It can certainly be the most frustrating. The cognitive functioning difficulties ME/CFS patients must cope with include:
ME/CFS patients have coined the term "brain fog" to describe their cognitive functioning problems. It's an accurate description because it feels as if your brain is in a thick fog, unable to "see" its surroundings.
- Short-term memory loss
- Difficulty with concentration
- Inability to retain what is read
- Word-finding difficulty
- Inability to calculate numbers
- Slowed comprehension
- Impaired speech
- Inability to keep track of things
- Problems with reasoning.
Chronic Fatigue Syndrome & Myalgic Encephalomyelitis often begins with an infection, exposure to a toxin, or some significant physical or psychological stressor that results in damage to the central nervous system (CNS). CNS abnormalities can lead to symptoms such as:
- Orthostatic intolerance - a significant change in blood pressure and/or heart rate upon standing that can result in lightheadedness, dizziness, nausea, tremors, sweating, pallor, fatigue, visual disturbances, difficulty breathing or swallowing, headache or swollen bluish-colored legs.
- Breathing irregularities such as holding your breath, irregular breathing, or shortness of breath following exercise.
- Irritable bowel syndrome - chronic abdominal pain, constipation and/or diarrhea, cramping and bloating
- Visual disturbances - blurring, sensitivity to light, eye pain, frequent prescription changes
- Burning sensations in the face or extremities.
- Chest pain.
Chronic Fatigue Syndrome & Myalgic Encephalomyelitis patients often report being extremely sensitive to light, sound and odors. It's as if all of their senses have kicked into overdrive. For them, going to a mall can be an overwhelming experience. They feel bombarded by all of the lights, crowd noise and strong odors from food courts, perfume counters and candle shops.
Some have found it helpful to wear earphones and use an iPod or CD player to listen to calming music when they are out in public. This helps block out crowd and traffic noises and allows them to focus on the music.
Some ME/CFS patients are also hypersensitive to touch (allodynia). In fact, some are so sensitive that even wearing clothes hurts. They generally stick to clothes made from very soft fabrics and often buy one size larger so the clothes don't cling to their bodies.
Certain fabrics and clothing such as Goodnighties have been created to help ease skin sensitivity.
This hypersensitivity can lead to both mental and physical overload. When mentally overloaded, patients may have difficulty making decisions and find they are no longer able to multi-task. Physical overload can result in impaired coordination, dizziness, clumsiness, numbness, tingling and nausea.