Chronic fatigue

Following my GP’s comment about chronic fatigue syndrome a few weeks ago, I logged onto Amazon and bought a few books on the subject. I’m not at all certain that I have CFS (or ME as it’s also known), and my GP thinks depression is the correct diagnosis. However, I’ve now had a couple of episodes of ‘depression’ where fatigue was a more prominent symptom than low mood, so I wanted to find out more – both to see whether the CFS label might fit and to learn some pacing techniques.

I’ve just finished the first book which is Beating Chronic Fatigue by Kristina Downing-Orr. I’ve written a general review of the book on Goodreads, including my reservations about the treatment plan the author offers, but here I’d like to relate the book more to my personal experience.

Of particular interest to me was the chapter on the differences between depression and CFS. According to the author, many people with chronic fatigue are misdiagnosed with depression. Here are some of the differences she highlights:

With depression, people often feel apathetic and lose all interest in or gain little pleasure from activities they previously enjoyed (anhedonia). Most CFS people can’t wait to recover, so they can again actively participate in their life’s previous joys. As a result, they often feel frustrated by and impatient with their lack of recovery.

I have certainly experienced apathy and anhedonia when depressed, but with my most recent episode, and the one in 2009, I don’t remember this being the case. I still enjoyed the things I normally would, when I had the energy for them. I wanted to be able to get on with my life and felt frustrated that I couldn’t – though it’s hard to be certain whether this is because I was enthusiastic but exhausted, or whether I just wanted to become more ‘acceptable’ and feel like less of a failure.

Depressed people often don’t want to get out of bed in the morning because they believe the day will lead to nothing other than hopelessness and despair. In contrast, people with CFS can’t get out of bed because they simply don’t have the energy or strength to do so.

Again, I’m no stranger to loss of motivation, hopelessness and despair, but this year and in 2009 my experience was overwhelmingly one of lack of energy and strength. I feel more sure about this than the previous point. I really wanted to get things done but I just didn’t have the energy.

When people with CFS go out or exert themselves a little too much, they can feel both mentally and physically worse, often leading to a lengthy setback. However, when individuals with depression push themselves and go, say, to a party, they often feel better for having made the effort. Mental exertion in CFS can lead to a worsening of physical and psychological symptoms. In depression, there is no detrimental effect.

My experience is absolutely that I can push myself too hard and there is a detrimental effect (in the case of the party, I might well enjoy it but still pay the price with exhaustion the next day). However, I know a lot of people with depression who’d say the same; surely they can’t all have CFS. Some mental health experts, such as Tim Cantopher, have said very similar things about depression i.e. that pushing yourself too hard can lead to a setback and delay recovery. For me, whether my main symptom is low mood or fatigue, it’s crucial to find a balance between doing too much and too little.

Other hallmarks of CFS that the book points to are flu-like symptoms and post-exertional malaise (feeling worse after exercise). I definitely tend to feel worse after a busy day but I’m not certain whether exercise itself is the trigger. As for flu-like symptoms, the only one I have is aching muscles which isn’t enough for a diagnosis using the criteria the book provides. Incidentally, other descriptions of CFS I’ve read online seem to fit me better.

My verdict? I’m not about to diagnose myself with chronic fatigue syndrome or go out and buy the 16 nutritional supplements the book recommends. However, it’s clear that fatigue is a real problem for me and that I no longer quite fit the ‘standard’ picture of depression. I will continue to look for information on pacing (this book was a bit vague on it) and I’ve also decided to make diet a priority, as I’ve been relying on processed convenience foods when exhausted. There are so many areas of my life I’d like to sort out and don’t have the energy to, but I’m hopeful that eating more fruit, vegetables and lean proteins will actually give me some of that energy. My aim is not to restrict the amount I eat or ban certain foods, but just stock up on all my favourite healthier ingredients (and not keep a lot of junk food in the house) so it’s easier for me to eat better. Unfortunately, this will require a trip to Evil Tesco. I’ll keep you posted…

5 thoughts on “Chronic fatigue

  1. I maybe reading something into the book’s comments which aren’t there (and I’ve no concentration span so I’ve not really read the post fully). But I’m not entirely sure that I agree with the author. It felt to me almost like the author’s de-legitimising depression and somehow making out that it is less of an illness…

    She seems to be suggesting that people with CFS want to recover, are frustrated with being ill, get tired and struggle, all things I agree with.

    But then if you look at her wording – people with depression she seems to imply don’t get frustrated by not being able to do things (something which often drives me to tears with frustration); that they merely don’t want to get up i.e. they could no problems if they wanted to; and that they’d all feel better if they pushed themselves harder and went out more. Again, no people with depression can absolutely exhaust themselves by going out and attempting to keep up the pretence of happiness, going out can sometimes help, but it’s not a given.

    By her definition of the differences I suspect that a lot of people with depression wouldn’t fit into her suggestions of the difference.

    I can understand the author being frustrated at people who are diagnosed as depressed (or perhaps if I’m reading her comments right “merely” depressed) when they have CFS, and I’m sure there maybe some validity in her comments, but either I’m being overly-sensitive or….

    • No, I think you make a valid point. She does seem to have a fairly inflexible view of depression that I’m not sure is accurate or fair to people with depression. She does acknowledge elsewhere (in a bit I didn’t quote) that fatigue can be a symptom of depression, so in terms of lack of energy vs. lack of motivation, I think I was picturing a spectrum where if you’re closer to the low-energy end you’re more likely to have CFS than depression. But the stuff about it not being possible to push yourself too hard when you’re depressed I’ve decided is bollocks and potentially dangerous. This has been one of my frustrations with the bog-standard CBT approach to depression – I naturally tend to push myself too hard and rest, rather than setting yet more goals, is what helps me most. I think when I first read the book I was wondering, “Is that because I actually have CFS and not depression?” but I know many other people with depression who’ve had the same experience, and even in episodes where I had extreme low mood, low self-esteem, lack of motivation etc I’ve still needed a lot of rest.

      Since I posted this I’ve read another, much more factual book on CFS/ME (Living with ME by Charles Shepherd) and I’ve come to the conclusion that while I definitely have chronic fatigue, which could be caused by depression or meds or something else, I don’t have chronic fatigue *syndrome*. It’s also cast some (further) doubts on Downing-Orr’s approach to treating CFS, so I wouldn’t place too much stock in what she has to say!

  2. Hmmm…

    CFS/ME is more than just extreme tiredness. The one person I know who has it has it very severely, so maybe I’m biased, but she is in constant severe pain (for which she is prescribed opiates which reduce but still leave her in a lot of pain), can’t sit up for more than 10 minutes at a time without this making her symptoms worse, has muscle spasms, can’t walk or stand, has nausea and vomiting (as an ME symptom, not as a meds side-effect) which prescribed anti-emetics reduce but don’t eliminate, sometimes loses the ability to speak and swallow, sometimes can’t move her limbs at all and is hyper-sensitive to light, sound and touch. She is pretty severely affected (although there are people who are more severely effected – some people with CFS/ME spend years lying in dark rooms because they can’t tolerate light, unable to speak or move, having to be tube-fed because they lack the energy to CHEW.)

    I’m not belittling your problem, nor am I a doctor, but it doesn’t sound like CFS/ME.

    Hypothyroidism can cause both extreme tiredness and depression.

    And I agree with differently’s point – I don’t think the author understands depression.

    • OH, sorry, completely missed the bit where you said you didn’t think you had it. So, pretty pointless comment, sorry.

      • Hehe, no worries!

        I was tested for hypothyroidism recently and my thyroid function is absolutely normal. The blood tests did show I had a mild vitamin D deficiency, though, which can cause fatigue and generalised aches and pains.

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