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What You Need to Know About Chronic Fatigue Syndrome

What You Need to Know About Chronic Fatigue Syndrome

CFS is a complex ailment with unclear causes, but there are ways to help battle fatigue and manage the condition.

Everyone gets tired, whether it’s from a tough workout or just running around doing errands. But if even a little exercise wipes you out every time, or you can’t mildly exert yourself for just a few minutes, you may have a debilitating condition called chronic fatigue syndrome. It causes severe fatigue that, by definition, lasts for more than six months. Other symptoms may include pain, headaches, brain fog and sleep problems.

While you might have heard the term chronic fatigue syndrome, researchers now prefer to call it systemic exertion intolerance disease (SEID). “That name was chosen to more accurately capture the symptoms of the disease,” explains endocrinologist and internist Lela Mansoori, MD, of Presbyterian/St. Luke’s Medical Center in Denver, Colorado. “It’s not just fatigue, it’s the inability for people to exert themselves.”

The condition affects at least one million Americans, with a likely one million more undiagnosed, says Dr. Mansoori. An expert panel convened by the Institute of Medicine put the number between 836,000 and 2.5 million. And while finding relief starts with a diagnosis, even that is no easy task.

Chronic fatigue syndrome or something else?
“The symptom of fatigue is present in many illnesses,” Mansoori says. “Diagnosing the condition is basically a diagnosis of exclusion.” Healthcare providers have to rule out a number of conditions before settling on a SEID diagnosis. Mansoori says she first checks for neurologic conditions like multiple sclerosis or a malignancy, other types of cancers, autoimmune diseases like arthritis or lupus, infectious diseases such as hepatitis or HIV, thyroid disorders and adrenal disorders.

And while the actual cause remains a medical mystery, there are several hypotheses, says Mansoori. Depression is often blamed for chronic fatigue syndrome, but depression is most likely associated with the condition as opposed to causing it. There’s evidence that childhood trauma increases the risk of developing chronic fatigue syndrome by up to six times, according to Mansoori, but the true cause remains unknown.

A July 2017 study in Proceedings of the National Academy of Sciences suggests that chronic fatigue syndrome might be caused in part by inflammation. Researchers found higher levels of 17 immune system chemicals called cytokines—13 of which are associated with inflammation—in the bloodstreams of people with chronic fatigue.

The more of these chemicals that were in the blood, the worse chronic fatigue symptoms were. Researchers think this may help pave the way for blood tests to help diagnose cases of suspected chronic fatigue syndrome. 

There are many similarities between chronic fatigue syndrome and fibromyalgia, another condition with no known causes. Some researchers believe they are the same disease, just different expressions of the symptoms.

How it feels to have chronic fatigue syndrome
Symptoms of chronic fatigue syndrome are often both physical and mental. “People may feel like they have to nap several times a day, and they have problems staying asleep or waking up too early,” says Mansoori. “They may feel drained after just mild activity like sweeping the floor or going for a walk. Their thought processes feel slow and an overwhelming number have problems with memory.” She says that patients may also report flu-like symptoms, along with heaviness in the arms and legs.

“Also, because of these symptoms, patients feel that their social interactions decrease, which leads to increased isolation,” says Mansoori. She says a patient may feel depressed not from the condition, but because of the many limitations on regular activities.

The Institute of Medicine’s expert panel released a report in February 2015 with new diagnostic criteria. They include:

  • Being fatigued and unable to function for at least six months
  • Exhaustion after exerting oneself
  • Unrefreshing sleep

And at least one of the following:

  • Cognitive impairment, like trouble remembering or expressing thoughts
  • Dizziness when sitting up or standing up quickly

Treatment options
There is no cure for chronic fatigue syndrome and treatment options are few, says Mansoori. Graded Exercise Therapy (GET) is often used to treat it. “GET involves a physical activity schedule that increases the patient’s activity level over time,” she says. The aim is to slowly reintroduce exercise and exertion into the patient’s life without overwhelming them.

Chronic fatigue syndrome has a strong mental health component as well. For that reason, cognitive behavioral therapy (CBT) is sometimes recommended. Research suggests that cognitive behavioral therapy can help with the symptom of post-exertional exhaustion as effectively as exercise can. “Most patients rated themselves as feeling much better,” says Mansoori. It’s important to see a CBT therapist that specializes in chronic fatigue syndrome, Mansoori notes.

“There are also some pharmacologic therapies, but compared to GET and cognitive behavioral therapy, medication has the most disappointing results,” says Mansoori. “There’s really no good evidence to support steroids or antiviral medication to treat the condition.”

What you can do
Still, there are things you can do to help yourself feel better if you suffer from chronic fatigue syndrome. The first is to talk to your healthcare provider about GET, therapy and any other recommendations. You can also:

  • Keep a diary to help spot what triggers fatigue. It can help you identify what might be worsening it, along with times during the day when your energy is usually highest and lowest. Use that information to plan your activities.
  • Ensure that you understand any tasks you must do and keep distractions to a minimum to combat brain fog.
  • Be positive. Don’t use negative self-talk, enforcing the idea that you can’t cope with your condition. Instead, be proactive and learn what works for you to manage low energy and other symptoms.
  • Maintain a regular bedtime routine and consistent wakeup and sleep times as another strategy for combating daytime fatigue.

Medically reviewed in August 2018.

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