A while back I found a great article on fatigue aimed at doctors but understandable to I would expect most of us who read this site. It’s all about cancer related fatigue. I hadn’t clocked that this thing actually has a specific set of diagnostic criteria.

You might find it fascinating to read the whole thing. The article says to get the diagnosis you must have at least five of the symptoms listed below. I don’t know about you but I have all of these significantly every day (and that’s with me feeling much much better than I used to). One that is not mentioned often enough is the emotional response to all this which I confess has been a major issue for me.

But to start with it lists how patients often describe their sense of fatigue:

• Tired
• Weak
• Exhausted
• Lazy
• Weary
• Worn-out
• Heavy
• Slow
• Like they do not have any energy or any get-up-and-go

Many of us say that the closest thing it feels like is the sensation you often get with a viral illness like flu or more recently COVID19. Your whole body is telling you it is time to rest because you are sick and need to just lie down. It is possible to fight against that feeling sometimes, but it is a real effort. But when you feel like that every single day for years it can really crush your spirit and your hope. No wonder that fatigue is reported by the article to have a negative impact on many areas of life:

• Mood
• Physical function
• Work performance
• Social interaction
• Family care
• Cognitive performance
• School work
• Community activities
• Sense of self

It is sometimes hard for other people to see that we are struggling with a physical, mental and emotional disability. How can a friend, family member, or work colleague tell the difference between someone who is simply lazy and someone who feels like they are struggling through life dragging a huge ball and chain around everywhere they go?

The article explains that cancer related fatigue is very different to the tiredness normal health people experience:

“Fatigue experienced as a side effect of cancer treatment is differentiated from fatigue experienced by healthy people in their daily lives. Healthy fatigue is frequently described as acute fatigue that is eventually relieved by sleep and rest; cancer treatment–related fatigue is categorized as chronic fatigue because it is present over a long period of time, interferes with functioning, and is not completely relieved by sleep and rest. Also, the level of Cacner related fatigue is often disproportionate to the level of activity or energy exerted.”

https://www.cancer.gov/about-cancer/treatment/side-effects/fatigue/fatigue-hp-pdq

I am sure I am not the only one who finds it intensely frustrating when people say things like “well we are all tired too you know!” But I have also expected too much from some people, and have had to learn to accept that most people will simply never be able to fully understand how it feels to those of us that wrestle with this issue every single day. How can they if they don’t live in our shoes?

But perhaps reading this list of symptoms and the articles I will link to at the end of this one might help some of your support circle to understand a bit more than they currently do.

Do you have Cancer related fatigue?

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ICD-10 Criteria for Cancer-related Fatigue

The following symptoms have been present every day or nearly every day during the same 2-week period in the past month:

1. Significant fatigue, diminished energy, or increased need to rest, disproportionate to any recent change in activity level, plus five or more of the following:
   • Complaints of generalized weakness, limb heaviness.
   • Diminished concentration or attention.
   • Decreased motivation or interest to engage in usual activities.
   • Insomnia or hypersomnia.
   • Experience of sleep as unrefreshing or nonrestorative.
   • Perceived need to struggle to overcome inactivity.
   • Marked emotional reactivity (e.g., sadness, frustration, or irritability) to feeling fatigued.
   • Difficulty completing daily tasks attributed to feeling fatigued.
   • Perceived problems with short-term memory.
   • Postexertional fatigue lasting several hours.
2. The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.
3. There is evidence from the history, physical examination, or laboratory findings that the symptoms are a consequence of cancer or cancer therapy.
4. The symptoms are not primarily a consequence of comorbid psychiatric disorders such as major depression, somatization disorder, somatoform disorder, or delirium.

(From cancer.gov/about-cancer/tre… )

One of the many challenges is with fatigue and particularly the dreadful muscle fatigue which for some of us is associated with legs feeling like lead weights, and muscle pains that are exacerbated by any exercise, how do we know how hard to push ourselves?

This dilemma about pushing ourselves definitely applies to limited mental and emotional energy too but I’ll focus mostly here on physical effort. 

On the one hand your body says “Rest!” People sometimes helpfully say things “listen to your body!” What if your body says “do nothing!” What if getting out of bed feels like a huge effort, and the more you walk about the worse your pain and exhaustion becomes? 

For me personally the last three years if I had just listened to my body I don’t think I would have got out of bed once!

Logically we feel that we can’t just listen to our bodies as the less we do the weaker we will get for sure. And so despite the feeling that we are being dragged down and down, most of us don’t just give in to that pull, and so we fight it. 

And it’s logical to fight it. 

Without strength building exercises I’m sure I would never have got out of bed when I was at my worst. And I guess I should be encouraged that I’m doing a lot better now than I was then. 

But progress is slow and seems to be associated with some weeks where I’m heading backwards not forwards. 

Whatever else is going on with us our muscles are still going to get stronger the more we use them and weaker the more we don’t. 

And so we push. 

But how hard is too hard?

It does definitely seem like we can push too hard and set ourselves back. And often I wonder if that’s what I’ve been doing. Though the critical voice in my head sometimes wonders if the opposite is the case: what if I’m not pushing myself hard enough?

Should we push so hard that we feel muscle aches and pains all the time? Or what if we push so hard some days that the muscle aches and pains cause us to not be able to even sleep?

And at what point should muscle pain and weakness actually lead us to push for further investigations to rule other conditions out?

I know for me for example that when I have an infection I do always feel weaker and less able to walk. Sometimes a few days of struggling more physically are actually an early warning sign of an infection. 

So perhaps some of us have low grade infections going on much more often than we realise and maybe that’s contributing to some of our fatigue. And of course things like vitamin deficiency, anaemia, an allergic or inflammatory response, or other physical problems can all make a difference. It is definitely worth exploring with your medical team the possibility that there may be specific issues contributing to your fatigue that might be responsive to treatment, and the article explains some of the things to look for.

Learning to be kind to yourself and pace yourself is perhaps the most important step to handle fatigue, and yet perhaps it is also the most challenging for us to achieve.

Can we push ourselves but also be kind to ourselves?

Learn more

National Cancer Institute Article on Fatigue