Understanding Chronic Fatigue Syndrome

Updated: May 2

If you or someone you know suffers from ongoing fatigue interfering with their quality of life, it may be Chronic Fatigue Syndrome (commonly known as CFS). So aptly named, CFS is a chronic condition characterized by fatigue or exhaustion.

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Often there is no known cause of CFS. Not understanding what causes this condition can be very frustrating for the sufferer and those who live with someone suffering in this way. It’s so much worse than being tired, and unfortunately, people who don’t have it often struggle to understand it.

What is Chronic Fatigue Syndrome?

Many people with CFS feel judged, misunderstood, and not heard. Worse, some people who experience short-term exhaustion will self-diagnose and then publicize online that a particular diet or treatment fixed them.


Unfortunately, these tales of cure can compound issues even more for the sufferer who has undoubtedly tried everything recommended to them to get better but can’t.


Like most scary things, understanding CFS can often help you deal with it differently. You may not find a cure, but you can learn how to improve life living with it and better care for yourself or your loved one who has it.

WHAT IS CHRONIC FATIGUE SYNDROME?

Chronic fatigue syndrome is a debilitating condition of unknown origin, characterized by persistent exhaustion, reduction of productivity, loss of quality of life, and depression.


Rather than being a symptom of another disease (which it can be), it’s also a debilitating condition all on its own. It can also sometimes not be adequately diagnosed or treated due to the nature of the symptoms, which fluctuates in duration and intensity. The thing that makes it chronic is that it always comes back.


The range of people who get CFS varies, making diagnosis especially difficult. However, over one million Americans have it, and as many as twenty-four million people worldwide.

What is Chronic Fatigue Syndrome?

CFS can also be called ME, which is short for Myalgic Encephalomyelitis, meaning pain in the muscles and inflammation in the brain and spinal cord. Although ME/CFS is probably a more accurate abbreviation, we’re going to call it CFS in this post since that’s still what it's most commonly called.


What we do know about CFS is:

  • People who get it are often in their 40s to 50s, but anyone can get it.

  • Women develop it four times more often than men.

  • It's often mild or moderate, but it is severe for about a quarter of the sufferers

If the condition is mild, most people manage it independently and never seek professional care because they think it’s a normal part of aging.

People with moderate symptoms tend to seek help because they can't move around for long periods and often have no choice but to nap in the afternoons. But unfortunately, this is when it starts interfering with jobs, social life, and activities of daily living and causes people to seek medical inquiries.

When symptoms get severe, it affects the quality of life significantly - as severely as anyone with issues like lupus, multiple sclerosis, or rheumatoid arthritis.


WHAT TRIGGERS CHRONIC FATIGUE SYNDROME?

Right now, we don't know what causes CFS. However, there does seem to be a family genetic history in some cases. We don’t know if this is just that the family is more susceptible or that something in the genetic makeup is causing it.


Research suggests that some people with CFS have the Epstein-Barr virus (known to cause mononucleosis) or have the Ross River virus (a debilitating virus that affects joints, making them painful and swollen).


In addition, many CFS sufferers may have Coxiella burnetii - a bacterial pathogen that causes fever.


We still don't know what comes first, CFS or another illness such as Lyme Disease, a symptom of which is chronic fatigue. CFS also goes together with other illnesses, from MS to Fibromyalgia to Hypothyroidism and more.


WHAT ARE THE SYMPTOMS OF CHRONIC FATIGUE SYNDROME?

There are many symptoms of CFS, but it's important to note that the main symptom is fatigue or exhaustion lasting six months or more that doesn't seem to be getting better. Many other symptoms can be debilitating and made worse piled on top of chronic fatigue.

What is chronic fatigue?
FATIGUE

The main characteristic of CFS is debilitating fatigue. If the fatigue lasts six months or more, it's considered a significant indicator that the patient has CFS.


Fatigue contains a whole host of symptoms, too, such as chronic sleepiness, headache, vertigo, aching muscles, muscle weakness, imparted reflexes, judgment issues, moodiness, etc.


One CFS sufferer describes it like this: "You know how you feel when you’re just finally getting off to sleep? But then something wakes you? Or remember how you felt the fourth day after giving birth, and you've only slept a few hours? You never imagined you could be so tired. That's how you feel when you have Chronic Fatigue Syndrome. It doesn't ever get better. The baby never grows up. The tiredness sticks with you no matter how much sleep or rests you get. You're in perpetual need of sleep, but the sleep doesn't help."


Living with CFS means that you experience additional fatigue after doing things ordinary people do every day, like cleaning the kitchen or vacuuming the floor. You feel like you have climbed a mountain, and your legs and arms are filled with lead. You must sleep. But sleep doesn't help because you also have fatigue after sleeping. It never ends.

People with CFS also experience the following:


SLEEP DISTURBANCES

Many people with CFS try to sleep and can't fall asleep, or if they sleep, they feel like they are only on the verge of falling asleep all the time. So they wake up to any sound, roll over and wake up, or take hours to fall asleep, watching the clock, worried about needing to get up and function.


COGNITIVE PROBLEMS

Many people with CFS try to sleep and can't fall asleep, or if they sleep, they feel like they are only on the verge of falling asleep all the time. So they wake up to any sound, roll over and wake up, or take hours to fall asleep, watching the clock, worried about needing to get up and function.


ANXIETY

The horrible symptoms of Chronic Fatigue Syndrome often cause the sufferer to feel quite anxious about their life. They may feel like they are a failure and cannot get their lives back on track. Going to an event or planning anything makes them anxious because they worry they won't present themselves at their best or fulfill their obligations.


They might want to plan something a few days or months down the line and bow out due to not staying awake that day enough to fulfill the task. They may not even have the energy to get dressed.


DEPRESSION

When the reality of diagnosis sets in, many people with CFS suffer from depression. They can't do what they once loved doing; society can be judgmental about that, and no one understands. As a result, they may self-isolate, and depression becomes a serious matter.


HEADACHES

Many people with CFS also suffer from chronic headaches. However, this is not just a regular headache either; it's a debilitating addition to the fatigue that plagues them.

MUSCLE ACHES

Sometimes, muscle aches are due to a primary diagnosis of MS or Fibromyalgia, which is causing the CFS in the first place. Still, some CFS sufferers experience muscle aches and pains as part of the condition.


MUSCLE WEAKNESS

Many people with CFS have weak muscles due to feeling too sluggish to exercise or move around. But we don't know which came first. We know that the CDC states that strenuous exercise makes the condition worse for some CFS patients.


PAIN SENSITIVITY

A heightened sense of pain may be caused by primary conditions causing the CFS but made much worse by the CFS.


SORE THROAT

Many people with CFS complain of a sore throat more often than others. A sore throat can sometimes be due to a recurring strep infection, which may also cause CFS in some people.


LOW-GRADE FEVER

Many CFS sufferers have many low-grade fevers that can't be traced back to a pathogen. However, that doesn't mean there isn't one; we don't know what it is yet.


BODY PAIN

Many people with CFS report widespread pain throughout their bodies. This pain occurs whether or not they have an underlying problem with MS or Fibromyalgia.


SLOW REFLEXES

Many people with CFS have slower reflexes due to exhaustion and the inability to focus.


The range of symptoms is part of the problem of getting a quick diagnosis. And unfortunately, a CFS diagnosis can be quite depressing for the sufferer because there is no known cure for CFS.


If symptoms are severe, they can be debilitating. However, it does qualify for disability support in most countries with a social system. Still, it can take years and years to get approval - even with a doctor's recommendation.


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