The Ultimate Guide to Chronic Fatigue Syndrome

Last Updated on March 9, 2023 by melissanreynolds

This Ultimate Guide to Chronic Fatigue Syndrome will feature more practical resources than theoretical.

What we need are concrete steps of what to do, while exhausted. I will share many articles that I have created with loads of theory, research and information. But the point of this article is to give you some things to consider, research and try.

So what are we going through here?

1. Definition and Symptoms
2. Diagnosis and Prevalence
3. My Experience
4. The First Book You Should Read
5. My Five Recommendations for Managing and Mitigating Chronic Fatigue
6. Wrap Up and What to do Next

Prefer to listen?

Chronic Fatigue Syndrome Definition & Symptoms

Chronic Fatigue Syndrome is defined as profound fatigue lasting six months or more. For loads more detail, see this article. With key symptoms such as post-exertion malaise, orthostatic intolerance, trouble sleeping, brain fog and more.

It is NOT sleepiness, tiredness caused by too many late nights or anything else the next person on the street experiences. (It is frustrating when a person unaffected by chronic fatigue says, “me too” when a person with chronic fatigue tells them they are exhausted – at least they can go get a few good night’s sleep and be fine. This is ongoing for the person with chronic fatigue).

It IS unrelenting and usually coexists with other symptoms, such as chronic pain and insomnia. It also causes other symptoms, such as post-exertion malaise (fatigue after exertion), dizziness upon standing, headaches, difficulty concentrating and more. See this article for more on symptoms.

The Severity of Chronic Fatigue Syndrome

The severity of the fatigue can be anywhere from mild to very severe (bed bound). With most people falling into the mild to moderate category.

With mild chronic fatigue one can generally function, with difficulty. This is my favourite rating scale as it shows the symptoms and the general amount of activity we could/should do. For a long time there was a mismatch between my symptom level and the amount of activity I was trying to do, which left me in a boom/bust cycle. Continually making my symptoms worse.

With all of the things I do to manage my symptoms as well as possible, I am about a 60, “Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.” I share more about this in How I Halved My Pain and Fatigue Levels post.

Chronic Fatigue Diagnosis & Prevalence

Unfortunately the path to diagnosis and treatment is long for the average person with chronic fatigue. Because the symptoms are so vague, they can be easily ignored.

Because so many people remain undiagnosed and untreated, it is difficult to say how many people suffer. There is also an entire discussion around when chronic fatigue is considered chronic fatigue syndrome. Very rough estimates suggest around 17 million people worldwide may have chronic fatigue syndrome. For more see this article.

My Experience with Chronic Fatigue Syndrome

I have been struggling with pain, fatigue and insomnia since my teenage years. I was sent to specialists at 17 years old to investigate and they ended up implying I was making it up because the pain changed so much.

During my last semester at university I got a very bad bug (like a flu) and the fatigue that came with it was overwhelming. Even after treatment (antibiotics) and several weeks of rest the fatigue never fully receded. Over the past decade it has reduced in intensity, especially with all of the treatments I will share below.

The most surprising thing was that I didn’t find out I was officially diagnosed with Chronic Fatigue Syndrome until EIGHT YEARS after the fact. That knowledge would have helped me a lot.

The First Book You Should Read

From Fatigued to Fantastic by Doctor Teitelbaum is my number one recommendation.

Affiliate notice: Please note that some of my links are affiliate links and if you make a purchase using these links I may make a small commission at no extra cost to you. Every little bit supports me to continue this work.

The most surprising thing was that I didn’t find out I was officially diagnosed with Chronic Fatigue Syndrome until EIGHT YEARS after the fact. That knowledge would have helped me a lot.

My Recommendations for Managing and Mitigating Chronic Fatigue

In brief, here are what I recommend for managing and mitigating chronic fatigue:

• Working on sleep to improve it as much as possible (hard, I know)
• Pacing (using the energy you do have well)
• Resting as well as you can
• Living as healthily as possible
• Managing other conditions as best you can (including pain)
• Manage stress
• Energy-enhancing supplements
• Very gentle movement (suited to your current ability levels)

Let’s look at these in a little more detail

Sleep

Sleep is so important, yet so elusive for people with chronic illness. Insomnia is so prevalent. I have worked very hard on this because I suspected that sleep would make a difference for me. And it does. But, despite my best efforts, it is still difficult.

This post outlines all I have learnt on sleep and will give you a list of things to try. The most important contributors to my sleep include sleep hygiene, Yoga Nidra, LDN and Recovery Factors supplement.

2022 Update: Quetiapine has improved my sleep quality where nothing else ever has. 25mg per night helps me get around eight hours of broken sleep, with REM or deep sleep being in the normal range. Unfortunately proper sleep does not magically cure the CFS, or I would not have CFS. But it does help immensely!

Pacing

Using the energy that you do have well is so important. My major gains did not come until I reduced my work hours and learnt to rest well. This subject might only consist of one paragraph here, but it is not an easy thing to do. And it will help.

This post is my ultimate guide to pacing.

Resting Well

Learning to rest well has been so important to my physical and mental wellbeing. Sleeping poorly, being unable to nap and experiencing chronic fatigue is just so emotionally draining! Once I learnt to rest well in the form of guided meditations, my life changed for the better.

This is why I have dedicated hundreds of hours to yoga teacher training, meditation teacher training and sharing these resources with you.

I have a free series which will help you get some rest. One of the 10 minute classes is my favourite guided meditation (that I use daily), another is restful yoga. All four will leave you feeling a little relaxed and refreshed.

You might like these posts about rest:

Yoga Nidra for Fibromyalgia

Bed Yoga for Chronic Pain and Fatigue

The central nervous system, restorative yoga and chronic pain and fatigue

Living as Healthily as Possible

You want to give energy with your lifestyle and not drain it. This post here will help you with this. Essentially, you want a nourishing diet, plenty of water, fresh air, gentle movement (whatever this means for you right now), less stress and more. This post is all about how to approach Yoga with Chronic Fatigue Syndrome .

Minimizing or avoiding stress. Increasing your stress resiliency.

Energy enhancing supplements might be something to consider.

Managing Other Conditions as Well as Possible

This is multipronged – one the one hand, other conditions add to chronic fatigue and on the other, medications can add to it. Discuss with your doctor if any of the medications you are on cause excessive fatigue, and if so, if there is an alternative.

Managing chronic pain will also help chronic fatigue.

Ultimate Guide to Chronic Fatigue – The Video

Wrap Up

This post contains a lot of resources. I have been researching, experiencing this and sharing these resources for many years now so there is a lot here.

What now? Action Points

Choose ONE area to work on. For example, try some Yoga Nidra for some good rest. Or look into pacing or sleep.

Then come back to this post and work through the next thing.

Share with us – what are your best tips for managing fatigue?