Understanding Chronic Fatigue Syndrome: A Simple Explanation

This Goes WAY Beyond Tired!

Unrefreshing Sleep
Unrefreshing sleep is common in fibromyalgia & chronic fatigue syndrome.. Mark Douet/Getty Images

"I Get Tired, Too"

We all get tired. It's part of life, and especially part of modern life.

Think for a moment about the last time you were especially tired at work. It's harder to focus, harder to function, but you can push through it, right?

Now think back to the last time you were really sick with something like strep or the flu -- too sick to work, and too sick to function. Can you remember how exhausted you were, how hard it was to get out of bed and even take a shower?

When you're sick like that, it's like your body just shuts down and demands that you rest.

There's a big difference between the two types of tired. The second kind is what people with chronic fatigue syndrome (CFS or ME/CFS) deal with every day. They're not just sleepy, and they can't just push through it. They're so wiped out that their bodies demand rest and want to sleep constantly.

A woman who's a regular in a Fibromyalgia & Chronic Fatigue Syndrome forum has a great anecdote that helps people relate to how she feels every day:

"Several years ago I was put under anesthesia for a dental procedure. I amazed the nurse and surgeon when I woke up because I was reading and chatting away. They couldn't believe how functional I was; the nurse actually called a couple of people over. I realized my 'amazing' ability was a result of fighting through CFS fatigue for years."

Most people who are regularly tired can trace it to some aspect of their lives -- they don't get enough sleep, they're too busy, they're under too much pressure, etc.

People with ME/CFS, however, don't have an obvious cause of fatigue. Usually, they were perfectly healthy people one day and no longer healthy the next.

What It Does to Your Body

In most cases, this condition comes on suddenly. While scientists don't yet know exactly what causes it, a growing pool of evidence points to a combination of genetic predisposition and exposure to viruses or toxins.

Many cases start after a flu-like illness, and some of the symptoms simply never go away.

What many experts believe is going on is constant immune system activation, as if the body is trying to fend off illness. Working that hard all the time is a big drain on the body, which is part of the reason we all get so tired when we're sick.

Beyond Fatigue

As if that level of fatigue weren't enough to deal with, the illness can bring a host of other symptoms. Experts recognize about 45-50 of them, and each person deals with a different mix of symptoms and levels of severity.

Common ME/CFS symptoms include:

The cognitive problems are sometimes severe. Regardless of how intelligent the person is, he or she may become forgetful, be unable to recall common words, frequently lose a train of thought, or sometimes become confused. Simple tasks such as reading a newspaper, cooking a simple meal, or finding your car in a parking lot become daunting and overwhelming.

In many people, cognitive problems are so severe that they chose to stop driving completely.

Well-meaning people frequently tell those with this condition that they'd feel better if they'd get more exercise. Most people do get an energy boost from exertion, but people with ME/CFS don't. They have a symptom called post-exertional malaise, which means that even small amounts of exertion can make all of their symptoms worse for a couple of days.

Since deconditioning can add to the fatigue and weakness they face, a gently graded routine is one of the treatment recommendations (and it's extremely controversial, with some believing even a graded approach can be damaging.)  

Disbelief & the Need for Support

Imagine suddenly feeling sick and exhausted all the time and having someone tell you, "you're not really sick." People with ME/CFS face that all the time. Some doctors say they're depressed or that it's all in their heads -- or they're just whiners or hypochondriacs. It's also common for them to tell someone about their diagnosis and hear something like, "I think I have that, too. It seems like I'm always tired."

Because we don't yet have a good diagnostic test for ME/CFS, sometimes it's hard for people with the condition to convince the people around them they're really sick. It can strain marriages, drive friends apart, and make work conditions especially stressful. This leaves people feeling isolated, which compounds the depression that frequently goes along with any debilitating illness.

Some are able to find medications, supplements and life-style changes that help them feel better, but it's a long, difficult process of experimentation and not everyone finds things that make a big difference. So far, no drug is FDA-approved for treating this illness, and no treatment works for everyone.

ME/CFS can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.

  • It's NOT psychological "burn out" or depression.
  • It's NOT laziness.
  • It's NOT whining or malingering.
  • It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.

This is a serious, life-altering, frustrating, often misunderstood illness. What people with ME/CFS need most of all is emotional support and understanding from the people in their lives.

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