Chronic Fatigue Syndrome Is More Than Just Being Really Tired All the Time
Chronic fatigue syndrome is notoriously misunderstood. Here, experts explain everything you need to know about the condition.
Feeling tired all the time can seem like the norm when you're always on the move. Between working, feeding yourself, getting enough sleep, socializing with friends, maybe getting a workout in, and the dozens of other things you do each day, it can be easy to run on empty. But there's a difference between feeling worn out from your daily to-dos and something much more serious like chronic fatigue syndrome.
Here, experts explain what chronic fatigue syndrome (CFS) really is, the stigma associated with the condition, and why it's more than just feeling tired 24/7.
What is chronic fatigue syndrome, exactly?
Chronic fatigue syndrome—technically known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)—is a debilitating disease that can cause a wide range of symptoms, the hallmarks being extreme fatigue that lasts six months or more (and doesn't improve with sleep), consistent problems with short-term memory and concentration, and chronic body discomfort, says Vicky Whittemore, Ph.D., program director at the National Institutes of Health's (NIH) National Institute of Neurological Disorders and Stroke.
ICYDK, chronic fatigue syndrome has long been stigmatized, not just by general skeptics of the condition, but even medical experts. Physicians often question the validity of their patients' concerns as they describe their CFS symptoms (more on those in a bit) and falsely assume that people with CFS are "psychologizing" their symptoms (meaning they believe their patients' physical symptoms arise from the mind rather than the body), according to research published in the medical journal Qualitative Health Research.
"To a casual observer, people with chronic fatigue syndrome often look as if they are in normal health," says Whittemore. "But for people who know patients before and after the disease strikes, the dramatic changes in their abilities and lifestyle are self-evident." (Related: How Having a Chronic Illness Made Me Love Running)
Despite the stigma, CFS is a very real disease for those who have it. While there aren't exact stats on how many people suffer from chronic fatigue syndrome, current estimates suggest that number is between 836,000 and 2.5 million people in the U.S. alone, says Whittemore. "Researchers at the Centers for Disease Control and Prevention (CDC) are collaborating with state public health departments to collect information about how many people are affected by this disease," she adds.
Though ME/CFS typically affects more women than men (which might also explain some of the stigma attached to the condition), anyone can develop chronic fatigue syndrome, including children and older adults, explains Whittemore. "The average age of onset is 33 years, although ME/CFS may start as early as 10 years old and as late as 77 years old," she notes.
What are the symptoms of chronic fatigue syndrome?
One of the most common (and misleading) beliefs about chronic fatigue syndrome is that it just means you're really tired, which sounds trivial. But in reality, ME/CFS can include a huge range of symptoms that can impact you from head to toe, says Whittemore. Aside from the aforementioned extreme fatigue, memory problems, and systemic discomfort, people with chronic fatigue syndrome can also struggle with a persistent sore throat, digestive issues (like irritable bowel syndrome), orthostatic intolerance (dizziness or lightheadedness when sitting or standing up), and post-exertional malaise (meaning existing symptoms worsen after physical or mental activity), she explains. (Related: 6 Surprising Things That Make You Tired)
Other common chronic fatigue syndrome symptoms can include flu-like ailments (like chills, night sweats, and muscle weakness), as well as mental health issues (such as depression and anxiety), adds Raphael Kellman, M.D., founder of the Kellman Wellness Center in New York City.
To be clear, symptoms of chronic fatigue syndrome can look very different from person to person, notes Whittemore. "These symptoms may be mild for some time before suddenly becoming severe and life-changing," she explains. "For some individuals with ME/CFS, the symptoms come on immediately, while for others the symptoms come on more gradually. Symptoms may persist for years and can change subtly over time. Many individuals with ME/CFS never regain their previous level of health and functioning."
How can you tell the difference between feeling tired and having chronic fatigue syndrome?
Everyone feels tired—like, genuinely too tired to function—sometimes. But distinguishing between regular tiredness and chronic fatigue syndrome ultimately comes down to your ability (or lack thereof) to regain your energy and feel well-rested again. Think about it this way: When you have a really exhausting week at work, a restful, low-key weekend usually does the trick to help you feel human again, right? Well, for people with chronic fatigue syndrome, there is no amount of rest that makes the fatigue go away, says Dr. Kellman. (Note: CFS is also different from burnout—here's what you need to know about burnout.)
To that end, in order to be diagnosed with ME/CFS, your fatigue—meaning tiredness that has not gotten better with sleep/rest—must last for at least six months, and you must be able to show that you've experienced a "major decrease in your ability to do the things you did before you got sick,—including work, school, social, or personal activities," according to University of Michigan Medicine. For some, that might mean recognizing a drastic change in productivity at work: Maybe your brain fog (a common symptom of chronic fatigue syndrome) has become so intense that you now take an entire day to complete a task that used to take you an hour, tops. (Side note: Loss of productivity can also be a symptom of depression—one of many reasons why chronic fatigue syndrome is often misdiagnosed as depression. While experts say it can be very difficult to distinguish between CFS and depression, the main difference between the two is that the former refers to a physical illness that may be accompanied by a mental health condition such as depression, along with several of the other aforementioned physical symptoms of CFS, according to Harvard Health. Moreover, different tests of the brain and nervous system would likely reveal abnormalities related to depression, while the same tests wouldn't do the same for someone with chronic fatigue syndrome, according to the organization.) For others, it could mean noticing a difference in how your body responds to exercise: Perhaps an hour-long gym session went from being your normal daily workout routine to a nearly impossible physical feat, as ME/CFS is known to be "exacerbated" by increased physical activity, notes Dr. Kellman. (Related: 9 Reasons to Skip Your Workout... Sometimes)
Whatever the case may be, the key difference between regular tiredness and chronic fatigue syndrome is that the latter simply does not go away, no matter how much sleep you get, how many days off from the gym you take, or how much vacation time you take at work, explains Dr. Kellman. "Fatigue related to [lifestyle] factors will improve when the root cause is addressed, such as avoiding stress, taking time off, and getting enough sleep," he says. But addressing the fatigue in chronic fatigue syndrome involves much more than just getting enough rest.
What are the causes of chronic fatigue syndrome?
Experts have yet to identify the exact cause of chronic fatigue syndrome—making an already-complex disease even more complicated, says Whittemore.
In fact, it's possible that chronic fatigue syndrome can have more than one cause, meaning those with the disease may feel ill as a result of a number of different factors (which also complicates diagnosis and treatment of ME/CFS), according to the CDC, which is currently investigating several possible causes of chronic fatigue syndrome. The main suspects: genetic links, hormone imbalances (specifically thyroid—more on that in a sec), infections that may trigger the disease (including certain herpes infections—like Epstein-Barr virus and human herpesvirus 6—among other viral infections), and immune system changes that affect how the body responds to stress and/or infections.
There might also be a link between gut health and chronic fatigue syndrome, says Whittemore. "The gut microbiome—the complete collection of viruses, bacteria, and fungi that live in the intestines—appears to play an important role in many diseases [including ME/CFS] without a clear understanding of how and why," she explains. "Some individuals with ME/CFS have gastrointestinal issues and several researchers are investigating potential links between the gut microbiome and ME/CFS."
People who have "overused" antibiotics (which, in itself, can impact gut health) may also be at an increased risk for chronic fatigue syndrome, adds Dr. Kellman. However, more research is needed to confirm this link, he says. (Related: Do You *Actually* Need Antibiotics? A Potential New Blood Test Could Tell)
In some cases, chronic fatigue syndrome may also be related to thyroid function, says Dr. Kellman. Anecdotally, many patients show symptoms of both ME/CFS and hypothyroidism, a condition in which the thyroid doesn't release enough of the T3 (triiodothyronine) and T4 (thyroxine) hormones, leading to metabolism issues, fatigue, and joint/muscle pain, among other symptoms, he explains. Plus, research published in the scientific journal Frontiers in Endocrinology suggests a link between CFS and lower levels of these thyroid hormones. However, not every person with ME/CFS has an underactive thyroid, and vice versa, so the connection between the two requires further investigation, notes Dr. Kellman.
There's also a link between chronic fatigue syndrome and fibromyalgia, another condition that's seen its fair share of stigmatization, says Dr. Kellman. ICYDK, fibromyalgia is a condition that can cause pain and stiffness throughout the body, as well as sleep issues, migraines, mental/emotional distress (that may, in some cases, be severe enough to constitute depression and/or anxiety), and problems with memory and concentration, among other symptoms, according to the CDC.
Sounds familiar, doesn't it? "There is a substantial overlap between the symptoms of ME/CFS and fibromyalgia," says Whittemore, noting that it's unclear whether one "causes" the other. "People may have one or both [diseases]," she says. "Researchers are working to tease apart the two diseases to understand how they are related." (Related: Living with Fibromyalgia for 15 Years)
How is chronic fatigue syndrome diagnosed?
Because symptoms of chronic fatigue syndrome can mimic those of other conditions, it can be extremely hard to pin down an accurate diagnosis—meaning those with ME/CFS often feel frustrated and confused as their symptoms go untreated, says Dr. Kellman. "It may also be possible to have ME/CFS in addition to another disease," complicating diagnosis (and treatment) even further, adds Whittemore.
If you believe you might have chronic fatigue syndrome, Whittemore recommends scheduling a visit with your primary care doctor ASAP. "Depending on your symptoms, you may then be referred to specialists for additional tests," she explains.
However, even once you're in the hands of a specialist, diagnosis often remains extremely complicated. For one thing, there are no specific lab tests to diagnose ME/CFS directly, according to the CDC. This means that diagnosis of the disease is heavily based on thorough evaluations of a person's symptoms and medical history, along with lab tests that can rule out other underlying conditions, according to the organization. (Related: Do You Really Need a Primary Care Doctor?)
"Often there are no obvious abnormalities on physical examinations or in the results of medical blood testing," explains Whittemore. "Individuals will frequently be referred to a variety of medical specialists and may be diagnosed with other problems before arriving at a ME/CFS diagnosis."
How do you treat chronic fatigue syndrome and is it curable?
Unfortunately, there is no cure for ME/CFS, nor are there any FDA-approved treatments for chronic fatigue syndrome, says Whittemore. "Instead, treatments focus on improving the symptoms of the disease," she explains. For example, sleep issues resulting from chronic fatigue syndrome will often be treated with over-the-counter or prescribed sleep medication; body pain may be addressed via OTC medicine like ibuprofen and/or specialized physical therapy; mental health issues like depression or anxiety can be treated with medication, therapy, and/or a combination of the two; and memory/concentration problems may be addressed through diet changes and/or counseling, according to the CDC.
But a large part of chronic fatigue syndrome symptom management is called "pacing" which is, more or less, exactly what it sounds like: planning periods of activity and rest to pace yourself and stay within your individual limits for mental and physical activity, as to not overdo it, according to the CDC. (Related: How to Make Time for Self-Care When You Have None)
Understandably, this can be quite difficult for people with ME/CFS, who often feel extremely fatigued by everyday activities like grocery shopping, brushing their teeth, and socializing with others. But many of these activities are simply unavoidable. So, in practice, "pacing" doesn't just mean recognizing when you're too fatigued to do something. It also means knowing where your boundaries are to begin with and consistently respecting those boundaries, notes Whittemore. In other words, even on a "good" day when symptoms seem mild), it's better to stay within your general energy limits than to push yourself to the point of a "crash".