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    Posted on Oct 24, 2016

    19 Facts About The Disease That Makes You Tired All The Time

    More than 1 million Americans suffer from chronic fatigue syndrome. Here's what you need to know.

    Imagine being constantly exhausted, like you're physically and mentally depleted for months — even years — and no one can figure out why.

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    This is what over one million people experience every day with chronic fatigue syndrome (CFS), which is defined by the CDC as an overwhelming fatigue lasting six months or more, plus a host of other symptoms that don't get better with rest, and get worse after physical or mental exertion.

    CFS is a wildly misunderstood and complex chronic disease, sometimes also referred to as “myalgic encephalomyelitis” (ME) or chronic fatigue and immune dysfunction syndrome (CFIDS). Many patients prefer to use the term ME/CFS, because the term “chronic fatigue” can be stigmatized. However, for the purpose of consistency with current medical literature and clarity for readers who are unfamiliar with the condition, we will use "chronic fatigue syndrome" and "CFS" in this article.

    1. CFS kind of feels like one day you just "woke up in a fog."

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    You know that exhausted, foggy feeling you get when you have a bad flu or virus? Experts say this is how many patients describe CFS, but the difference is that this fatigue never goes away like a normal flu does.

    "Besides being physically exhausted, it's also hard to think, so it really feels like your body and brain just aren't fully awake," Dr. Kevin Fleming, medical director of the Chronic Fatigue and Fibromyalgia Clinic at the Mayo Clinic in Rochester, Minnesota tells BuzzFeed Health. And sure, you can't really measure or diagnose this "fogginess" with medical testing, but that doesn't mean it isn't very real.

    2. It's not the same as feeling tired or lazy.

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    Sure, we've all experienced some extreme exhaustion after losing sleep or exercising too hard. But this is different.

    "Chronic fatigue syndrome causes a profound, pathological level of physical and mental exhaustion," Dr. Peter Rowe, director of the Children's Chronic Fatigue Clinic at Johns Hopkins Pediatrics in Baltimore, Maryland, tells BuzzFeed Health. It's lingering, constant, and can make it feel impossible to even get out of bed or do simple tasks like showering or cooking.

    Another thing that makes this fatigue unique is that it doesn't get better after weeks or even months, Rowe says. Actually, in order to meet the diagnostic criteria, it has to occur on its own (not from another illness) for at least six months or more. This is why people really shouldn't confuse "fatigue" with tiredness, or even laziness. "The fatigue is not a choice, it's a major impairment to these peoples' lives," Rowe says.

    3. And no, sleeping doesn't help the fatigue at all.

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    Unlike when you overdo it one day and feel energized after a good night's sleep, people with CFS are still exhausted when they wake up, Rowe says. Patients can sleep 10, 12, or even 16 hours each night and still not feel rested.

    "Whatever sleep does to help us feel restored and refreshed, it doesn't happen for people with chronic fatigue syndrome," says Fleming. Not to mention, many CFS patients also suffer from sleep disturbances like insomnia or sleep apnea.

    4. Even small amounts of activity can wipe out CFS patients for days, or even weeks.

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    "One of the hallmarks of CFS is 'post-exertion malaise,' which means that when patients exert themselves physically or mentally, it worsens symptoms for over 24 hours," says Rowe. So something as simple as moving a piece of furniture or taking a hard test can land a patient in bed for days.

    Post-exertion malaise is a really helpful factor to differentiate CFS from severe depression, says Rowe, because research shows that increased activity tends to improve symptoms in depressed patients. "Usually these patients really want to be active and try to get out, but they don't because they know it'll end in horrible fatigue," Rowe says.

    5. It also causes specific physical symptoms like muscle and joint pain, headaches, or a sore throat.

    CFS can affect many different parts of the body and organs, causing debilitating physical symptoms. These can include muscle pain, pain in the joints with no obvious swelling or redness, frequent headaches, tender lymph nodes in the neck and armpits, and a sore throat.

    Many of these symptoms are self-reported, but Rowe says CFS patients can also have more severe or obvious physical abnormalities that show up when doctors do a physical exam. These can include tingling or numbness in limbs, bowel issues, abnormal flexibility, purplish discoloration of the limbs, and irregular heart rate or blood pressure when standing.

    6. CFS also causes cognitive impairments and mental health issues.

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    This can include trouble concentrating, reading, and retaining information in your short-term memory. The cognitive impairments also get worse after physical activity and exercise, Rowe says, so we know that's a trigger for this "brain fog." Patients can also suffer from anxiety and depression, experts say, either as a part of CFS or from the disabling effects of the disease.

    "If we give the same test to healthy people and chronic fatigue syndrome patients, the patients can usually rally and score the same as the healthy group — but a functional MRI shows they have to activate a wider area of their brain and recruit more neurons to do the same test," says Rowe. So CFS impacts the way the brain processes information. But when patients get neurological tests, there's no obvious brain disorder or abnormalities like tumors, Fleming says.

    This might be one of the most frustrating parts of illness, Rowe says, because there are patients who used to be writers or librarians and they can no longer do what they love because their brains simply don't allow them to.

    7. Most people who have CFS were active and healthy before the fatigue came along.

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    Patients can usually recount a specific date when they got ill and the fatigue hit, the experts say, and since then their lives have never been the same.

    "These are former runners, hikers, and lawyers who spent all day on their feet in the courtroom — the fatigue was a dramatic change," Fleming says.

    8. The cause is unknown, but it's often triggered by what patients describe as a bad flu.

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    About 40 to 60% of people report that the fatigue began after the sudden onset of a flu-like or infectious illness, says Rowe. The most well-recognized trigger since the 1990s is the Epstein-Barr virus (human herpesvirus 4), an infection passed through saliva that most people will get by adulthood. It often causes mononucleosis (mono), and is known to result in CFS for about 10% of those infected, Rowe says.

    Other possible triggers include the human herpesvirus 6 (HHV-6), cytomegalovirus (CMV), influenza, and sinus infections, but no single illness has been found to directly cause CFS. "Even if it usually happens after an infectious illness, after 25 years of hunting we still can't find any infectious origin," says Rowe.

    9. There's no test for CFS, so it's diagnosed by identifying the symptoms and ruling out other illnesses.

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    In order to get a CFS diagnosis, someone must have had isolated fatigue for at least six months plus four of these eight symptoms we've mentioned:

    * Unrestful sleep

    * Post-exertion malaise

    * Significant impairment of short-term memory or concentration

    * Muscle pain

    * Pain in the joints without swelling or redness

    * Headaches of a new type or severity

    * Tender lymph nodes in the neck or armpit

    * Frequent or recurring sore throat

    If you have the fatigue but less than four of these symptoms, the diagnosis is simply "chronic disabling fatigue."

    There's no biological marker for chronic fatigue in the body, so there's no specific test for it. "It's a clinical diagnosis, which means we recognize this typical constellation of CFS symptoms and rule out other possible causes by taking a detailed patient history and doing physical exams," says Rowe. CFS can mimic the symptoms from leukemia, kidney disease, severe anemia, and more — so doctors have to rule out a lot of "ifs" before they make a diagnosis.

    10. Many people go undiagnosed for a long time.

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    "About 80% of people, sometimes [more], who meet the disease criteria are undiagnosed," says Rowe. Why? Well, as mentioned, it's just hard to diagnose. And not all doctors agree on the key symptoms or definition of CFS because these have actually changed quite a bit in past decades, Fleming says.

    Another issue is that the symptoms and level of impairment can vary among individuals, so it might not be entirely obvious to some doctors that a CFS patient is ill. Not to mention, a sizable portion of the US population doesn't have health insurance, says Rowe, and it can take several appointments to really capture all the CFS symptoms and make a diagnosis.

    This can be especially frustrating for patients because it feels like doctors are blowing them off, Fleming says. But the experts say it's much less common now for doctors to doubt CFS patients because the medical community is becoming more educated about the disease. "It's important to know that an absence of a diagnostic test is not an absence in impairment," Rowe says.

    11. CFS is more common among women, but it affects people of all ages and ethnicities.

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    Women are two to four times more likely to get chronic fatigue than men, but the experts aren't exactly sure why. According to the CDC, it affects people of all different ethnic groups and income levels.

    People of all ages can get chronic fatigue syndrome, says Rowe, but there are two distribution peaks: one in the middle of adolescence and one between the ages of 30 and 40. It's less common in children, says Rowe, but doctors know that it isn't simply caused by getting older.

    12. Treatment depends on the individual, but it's usually a combination of medication and physical therapy.

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    "The most important part of treatment is to support the patient and let them know you will keep trying until something works," Rowe says. Doctors might prescribe various medications to regulate the sleep cycle, reduce blood pressure problems, ease chronic pain, or improve focus and attention. Some patients opt for homeopathic remedies or meditation for pain management.

    Another popular treatment is incremental exercise therapy, says Fleming, which enables patients to gradually add manageable amounts of physical activity back into their lives. "This is very important to prevent the body and muscles from becoming unconditioned and atrophied from the rest," Fleming says.

    Cognitive-behavioral therapy (CBT) can help, but the experts argue that its benefits are limited. "Studies have overestimated the effect of CBT because some scientists still believe it's a psychosomatic disorder, which is unfair to patients because we have evidence that multimodal treatment works best," says Rowe.

    13. Many people with CFS also have one or more additional chronic illnesses.

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    CFS isn't always isolated, and many patients have additional symptoms or disabilities from other chronic conditions. These can include tachycardia, which causes an irregularly rapid heart rate; Ehler-Danlos syndrome, a connective tissue disorder that causes anything from dislocating joints to leaky heart valves; and fibromyalgia, which causes widespread and severe muscle pain. This can make diagnostics and treatments even more complicated.

    14. Many people with CFS use the "spoon theory" to explain their limited amount of energy.

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    In the "spoon theory" analogy, the idea is that you have a limited number of spoons you can use in one day and each activity will cost one of them. The more demanding or physically intense the task, the more spoons it requires. When you use all of your spoons, you can't complete any more activities — so you want to make them last throughout the day by limiting exercise or exertion.

    You may hear someone with CFS say they're "running low on spoons" to communicate that they're worn out and need to rest. Many CFS-sufferers call themselves "spoonies," and gather online to form support networks.

    15. People with CFS often have to miss school and work, but also hobbies or fun things they used to love.

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    "Chronic fatigue syndrome has a major impact on quality of life, often as bad as the impact we see from heart failure or multiple sclerosis," Rowe says. Most patients can do some activities to care for themselves but they are unable to work full-time, and a small portion are completely homebound. The experts say CFS can lead to dependency on family for care, job loss, and financial strain.

    "I treat many adolescents and usually all they have the energy to do is go to school then sleep but they have to give up all sports, extracurriculars, and social time with friends," Rowe says.

    This isn’t someone who is lazy and wants to get out of work or school, the experts say; this is someone who desperately wants their life back. "It's not lethal — but it can ruin your life," Rowe says.

    16. Just because people with CFS “don’t look sick,” that doesn't mean the disease isn't very real and debilitating.

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    People with CFS often face judgement and stigma because the chronic disease doesn't have strikingly visible symptoms. "There's a tendency for people to pass off the disease as a fraud or a psychological problem even though their physical symptoms seriously suggest otherwise," Rowe says.

    A good analogy is the experience of a migraine, says Fleming. If you've had one, you know how debilitating and painful it is — but when you get a migraine you don't "look sick" or show any visible symptoms. The point is not to judge a CFS patient's condition or struggles by how they look on the outside.

    17. Researchers are still trying to understand what causes CFS so they can find a cure.

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    "We think that it's caused by an infection that results in long-term abnormalities in the body's nervous system and immune response, but this is all theoretical," says Rowe. Although researchers can't pin down the viral or bacterial infection, there is evidence that CFS is linked to nervous system and autoimmune problems.

    "Some studies have found elevated levels of inflammatory cytokines in the patients' cerebral spinal fluid, which usually show up when a flu or cancer happens," Fleming says. This suggests that CFS might cause an immune activation in the central nervous system, or autoimmunity. "We also think there's an issue with the autonomic nervous system, which controls involuntary body functions, because many patients have a hard time getting blood flow to the brain when standing upright and develop a rapid heart rate," Rowe says.

    There's another theory that CFS is caused by central sensitization, Fleming says, which basically means someone is hypersensitive to stimuli like noise, light, heat, cold, or electricity. So their brain sends abnormal pain signals to the central nervous system from normal stimuli that doesn't bother other people. It could explain why CFS patients feel so much pain, get frequent headaches, or feel so exhausted from exercise, Fleming says.

    18. But limited or no funding for CFS research is a big problem.

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    Unfortunately, the experts say that the funding for the National Institutes of Health to research CFS is very low compared to the number of people affected by the disease. "The severity of these patients' impairments isn't recognized, so chronic fatigue syndrome is largely ignored by the federal funding level," Rowe says.

    Just because CFS doesn't have an immediate "deadly" component like different cancers or infections, it doesn't mean that there's no urgent need for research. "We need more practical research on the biological mechanisms and treatment methods so we can find ways to get people functioning again," Rowe says.

    19. The good news: It's definitely possible to manage and even improve the symptoms of CFS.

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    "There's a significant number of people in the CFS community who argue that it's impossible to recover and treatment is pointless — and this is a terrible message, especially for young patients," Fleming says.

    The vast majority of people will notice some level of improvement after specialized treatment, the experts say. The improvement isn't always substantial, Rowe says, but it can help people manage their symptoms to a point where they can function again, return to work, and have a massive reduction in doctor's visits.

    There isn't one easy way to tackle CFS, and treatment is usually a long and hard road — but it's one worth taking, the experts say. "Patients should have hope that they can feel better one day again," Fleming says.

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