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Chronic Fatigue Syndrome: 10 Things People Misunderstand About This Fatigue

By HERWriter
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Chronic Fatigue Syndrome related image Photo: ThinkStock

I think we can all agree that Chronic Fatigue Syndrome is a stupid name for an incapacitating illness. I think we can also agree that it is exceedingly misleading to the casual observer.

Here are ten things that are often misunderstood about the "fatigue" of Chronic Fatigue Syndrome.

1) This Fatigue is not the same as tired.

I'm not tired. I run out of energy, but it doesn't make me drowsy. It floods my nervous system with static and it makes me bump into things. It distorts my vision, erases my memory and renders me incapable of speech or understanding, but it doesn't make me tired.

Tired is a sweet curled-up kitten by the fireplace. CFS "fatigue" is a juggernaut dragging me in a free-fall through empty space, while everything I love goes to smash.

2) This Fatigue is not the same as lack of energy.

When CFS "fatigue" hits, it can leave me unable to get up off my face. I may not be able to stand up for more than a minute or two before feeling like I'll fall down.

Then it's time to find a flat surface like a bed and become limp while trying to get enough air, and maybe make the shaking stop.

3) This Fatigue is not the same as sleepy.

For years, when I was my sickest, I never got sleepy though I had to sleep most of the day. Instead, I knew it was time to go to bed because I was vibrating.

My face was numb. My hands and fingers were too clunky to operate. My arms, hands and face tingled and burned. I couldn't fathom what anyone said, and couldn't think a thought to completion.

4) This Fatigue is not the same as depressed.

When I was very ill, I spent far more time angry and frustrated than I ever did depressed. Because I WANTED to do things. I wanted to see people and be involved in life outside my bedroom.

But I couldn't. Because CFS "fatigue" had stolen my ability to move, think, and communicate.

5) This Fatigue is not the same as exhausted.

We're going way beyond the normal experience of exhaustion here. CFS "fatigue" makes breathing a full-time job. It causes me to gasp for air, and it leaves me unable to lift my head. My strength is liquefied.

6) This Fatigue is not the same as lethargic.

Lethargy implies disinterest. But we have a powerful desire for life, we just have no ability -- physically or mentally -- to do anything about it. Picture us in a body cast, and maybe you'll get the idea.

7) This Fatigue is not the same as unmotivated.

See, it's not the desire that's missing, it's the ability to make our bodies do our bidding. Our brains may be too dysfunctional to even be able to think about what we want but at all times we do know that we want -- OUT!!!

8) This Fatigue is not the same as ... fatigued.

CFS "fatigue" is a multi-system breakdown, affecting the nervous system, the endocrine system, the immune system, the digestive system and the cardiovascular system. There are more but that sentence is already too long, and I'm sure I'm losing people.

Suffice it to say, systems are not working right, and they are bumping into other systems that normally they should flow seamlessly with.

9) This Fatigue does not pass after a few days' rest.

Think back to the last time you were recuperating from a severe case of the flu. Now, try to imagine that lingering sickness, that time of no-life, stretching from a few weeks to months. And then, to years.

10) This Fatigue is the stuff of night terrors where you're trying to wake up and save yourself, but you can't.

This is no well-mannered "fatigue". The relentless force in this waking nightmare is destroying everything you hold dear, and all you can do is lie helplessly watching as your life shrinks. And maybe disappears altogether.

I spent 15 years losing the battle against Chronic Fatigue Syndrome. Three years ago, I found treatment that worked for me, and now I am making a comeback.

http://www.ncubator.ca and http://ncubator.ca/blogger

Add a Comment20 Comments

Someone with fatigue should get a complete evaluation to rule out causes for their fatigue. Including tests for anemia, thyroid, infections and autoimmune. An integrative approach addressing lifestyle, diet, exercise and stress. A whole food antinflammatory diet, exercise and stress reducing techinigues are a good place to start. Supplements and medications may also be indicated.

You can consult more doctors here:

May 5, 2012 - 5:14pm

Hi Shari,

You'll find information that might be helpful on my website, www.ncubator.ca that goes into a bit of detail.

Essentially, my naturopath has focused on removing toxins and building up my immune system and detoxifying my liver.

Avoiding foods I'm sensitive to and staying on a low carb diet has helped. Natural anti-virals, liquid chlorophyll, vitamins B12 and D, omega-3 oil, adaptogens, whey protein powder, non-hydrogenated coconut oil, have all made a difference over time.

I take no drugs nor want to. I get acupuncture once a month. I try to get some rest every couple of hours. When I was very sick, I spent a good deal of my time in bed, resting or sleeping.

It has been a slow process and I'm not 100 percent but I'm able to work, freelancing for 20 - 30 hours a week, can cook meals, spend time with my family and go out for very short trips. Light years ahead of where I was 4 yrs ago.

I hope you find something useful here or on my site.


April 26, 2011 - 7:05am

I see that you answered my question above...sorry I missed it.

Thanks again!

April 26, 2011 - 6:58am

Hi Jody,

Thank you for writing this article. I saw a link to it on FB yesterday and put it on my profile. One person responded that she read it and found it so interesting bc she never understood CFS before and this helped her. I have been dealing with CFS for most of my life, but most debilitatingly in the past 15 years - with varying levels of recovery and relapse. I was curious when you said you found a treatment that was very helpful for you. Can you say anymore about what the treatment is? Of course we are all always looking for something to help.


April 26, 2011 - 6:56am

Hi buttersgal,

In general, it's been a matter of getting rid of toxins and reducing the load on my immune system, avoiding foods I have senstivities to like grains and many carbs ... and building health with foods that nourish me (in my case, meat, vegetables and healthy fats) as well as supplements like omega-3 fish oil, Vit. B12 and Vit. D, whey protein powder, liquid chlorophyll, coconut oil, and natural antivirals.

I get acupuncture once a month. I pace myself by taking frequent breaks through the day. Avoiding doing anything for more than 2 hrs at a time, then have a rest.

This is an overview, I'm sure I've left stuff out. But my website http://www.ncubator.ca has many articles that touch on my recovery process.

February 26, 2011 - 1:58pm

Oh my goodness. I felt like as I am lying in bed right now thst mst of these words were coming right out of my mouth. Please, what made you feel better as you stated ?

February 26, 2011 - 9:22am

Thanks, Dreams.

I appreciate your encouragement. :)

November 19, 2010 - 1:46pm

Excellent work, Jody -- as always.

November 19, 2010 - 1:28pm

I think sending it to people is a fine idea.

And while perhaps your dog wouldn't read it, you could always read it to your dog. :)

In fact, I'd bet your dog would understand it better than anyone, living with you and seeing what you go through. Thank God for loyal pets who never walk away. (Well, maybe the cats do that. :)

November 1, 2010 - 5:14am
EmpowHER Guest

Thanks Jody this is great.Very well done.I don' think anyone in my bedroom( my dog) would read it though.I would love to send it to about 20 people I know however.

November 1, 2010 - 2:56am
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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