Fatigue, lethargy, exhaustion, lack of energy – call it what you will, many chronic condition patients will experience varying degrees of lack of get up and go. Are you fatigued without ever (or rarely) feeling actually sleepy?
The Royal Australian College of General Practitioners describe fatigue as:
Fatigue is ‘that state … characterised by a lessened capacity or motivation for work … usually accompanied by a feeling of weariness, sleepiness, irritability or loss of ambition’.1 It is derived from the Latin fatigare, to tire. For the purposes of this review article, we regard fatigue as synonymous with tiredness and malaise.
Most chronic illness patients learn to pace. I’ve written Pacing for Beginners and Pacing UP, Pacing THROUGH, Pacing DOWN so I won’t go into detail again. Pacing is critical so we don’t boom and bust. Yet none of that answers the question of WHY are we lacking energy? Why do we burn out so easily?
At one stage I researched the research. I couldn’t find anything that gave me a concrete answer. Many theories and ideas, but no solutions or treatments. Many writers suggest the fatigue or lack of energy is caused by pain. Of course, the experience of pain can be worse if we are tired. What comes first, the chicken or the egg? While that is very valid in many cases, as pain is indeed tiring, it doesn’t explain those of us who have minimal pain. I can go for months without pain, but the lack of energy was always there.
In some cases it is suspected fatigue is a side effect of medications. This will be the case in some situations. But fatigue was one of my first symptoms, prior to any medications. Admittedly, in my specific case, I had a hyperactive thyroid which is known to cause fatigue, at least partly through disrupted sleep. I also had undetectable levels of Vitamin D back then. Comorbidity can indeed complicate troubleshooting!
I read also of pain leading to depression leading to fatigue. Again, possible in many cases. So it IS complicated. I hear SO MANY fellow patients complain of fatigue when it seems their primary condition is well managed – aside from the fatigue. Some conditions (mine is one) do list fatigue as a known symptom, while other conditions do not.
The focus was/is primarily on improving/maintaining mobility, and pain management, I could find little about improving or minimising the fatigue levels. Yet so many of my chronic illness contacts are vocal about the impact on their lives.
There has certainly been work done on measuring fatigue. Measuring fatigue is an important starting point, for how can we treat something if we can’t measure it? But any measuring is going to have a degree of patient subjectivity. A bit like the pain scale, which we are all familiar with. An allied health professional shared with me recently it is not unknown to have a patient cite a back pain of 8, only to easily bend over and pick up something they had dropped on the floor. How can we measure fatigue objectively? Would the medical profession take it more seriously if there was a blood test for that? Yes, there are blood tests that may isolate a cause for fatigue: Vitamin D, iron, thyroid function to name a few of the more common. Assuming all those are A-OK, there is no objective measure of my level of fatigue as a psoriatic or rheumatoid arthritis patient compared to any other patient with the same condition or any other condition.
I was discussing fatigue with a doctor recently. She said many patients across the range of arthritic conditions say they can manage the pain, but not the fatigue. The fatigue affects their quality of life far more than the pain. What can we do about it? Can anything be done about it?
One of the main improvements I am hoping for from the clinical trial I am on is an improvement in my fatigue levels AND to prevent it getting any worse. I totally recognise my fatigue is NOT too bad – I am aware it could be way worse. Even so, it is sufficient that yes, I have to pace, I have to avoid the boom/bust cycle. I have to be careful.
Recently a friend invited me to her birthday dinner. It was on a Monday night and a fair drive away. I knew if I worked Monday, drove and socialised Monday night, I would not cope as well as I should on Tuesday at work. I declined. Yet before I acquired my new life partner, psoriatic arthritis, that would not have been a problem at all. Fatigue is a far bigger problem for other patients than it is for me personally (at this time).
We need to exercise (where appropriate and recommended): that takes energy. We need to work (those who are able): that takes energy. We need to take care of our homes: that takes energy, especially if you own a cat – all that vacuuming. We need to shop for proper food and cook: that takes energy. When energy is limited, something gets dropped. Usually exercise is the first to be let go. That then means we don’t sleep as well, likely exacerbating the fatigue we already feel. Our bodies decondition, as a result we feel more pain, more pain makes us more fatigued. It becomes a vicious cycle.
About two weeks ago I was sitting in my lounge in the evening and yawned. I don’t think I’ve yawned for possibly five years. Yawning can be a signal we are ready to sleep (or hungry or bored). I’ve been sleeping better of late: now I’ve started yawning again. There may be more to yawning than we think. This article in The New Yorker from 2014 discusses yawning is a broader context – it isn’t only related to sleep hygiene. Even so, most of us can relate to yawning when we are tired.
I remember once being advised by a psychologist to go to bed/sleep “when you start yawning”. I recall thinking at the time,”That’s odd, I never yawn anymore”. I didn’t mention it though and promptly forgot about yawning. I was told if you delay, it will be 90 minutes before you feel sleepy again.
Yawning made me think about my experience of chronic illness related fatigue. I rarely felt sleepy (with or without yawns). There is a difference between feeling very, very tired and actually feeling sleepy. I’d forgotten what feeling sleepy actually feels like. Tired, yes – sleepy no. Am I alone in this?
Where am I going with all this? To be perfectly honest, I’m not really sure. I am very interested in hearing of others’ experiences. What can we patients do to raise the profile of fatigue as an issue we want fixed if at all possible? Yes, it is recognised, but what is happening to develop strategies or medications to relieve this debilitating symptom?
Please share your thoughts and experiences.
- Do you, as a chronic illness patient, feel fatigue is seen as important by the medical profession?
- Do you experience being really tired, but not sleepy?
- Am I the only one who stopped yawning?
- What impact does fatigue have on your quality of life?
- Do you think in your case it results from pain, medications or is it a symptom of your condition?
- Do you think your family and friends understand your fatigue?
- If you are a family member of a chronic illness patient, do you feel you understand?
- Anything else you would like to share?
Let me tell you something – writing about yawning makes a person yawn. A lot!
PLEASE NOTE: Fatigue can be caused by a great number of medical situations and can range from annoying to critically serious – this article is ONLY addressing where it is a symptom of an underlying condition. If you are concerned about ANY change in your fatigue levels, please consult your doctor.