Chronic Fatigue Syndrome/M.E. post

I’ve mentioned that I have CFS many times on here.  Following the gym session of which you can read in my last post, I feel like crap physically.  Specifically, last night and previous night VERY poor sleep quality and duration, plus bad headaches and sore throat/glands, which are my usual physical manifestations

Time and again I get this pacing thing wrong.  Then I feel guilty and so it goes on.  I’m confuddled about this bloody illness at the moment (‘confuddled’ isn’t a word – it’s a Blusilkism, I think).  Recently, more controversy over the symptomatic management – Professor Trudie Chalder of King’s College London has done a study showing the positive results of CBT, Cognitive Behavioural Therapy.  That’s not particularly surprising – the way we think affects our mood and behaviour and this applies to how we perceive physical symptoms as much as mental ones.

What’s more frustrating is the to’ing and fro’ing between other elements, especially GET (Graded Exercise Therapy) and Pacing.

Pacing is the more recent of the two approaches and in a nutshell involves keeping your energy levels under control by only doing a level of activity that you can keep up whether you’re on a ‘good day’ or a ‘bad day’.

I don’t know as much about GET but I think it’s more radical than pacing (I can’t think of the word – I don’t mean radical – but I decided to leave it as is to illustrate one of the symptoms of CFS, which is word-finding/brain fog).  GET pushes more; you increase your exercise levels incrementally and I think, but I’m not sure, that you do this despite any increase in symptoms you may feel.  So it’s sort of pushing the barriers.

For ages GET was fashionable and then it wasn’t, as some patients reported worsening of their illness.  Then pacing arrived, a middle ground.  Now, recently it’s changed again and we’re told there’s benefit from pushing the physical/mental limits.

Sorry this post has been a bit vague and short on the source links for the research – I’m too tired right now to sort all that out, but it’s very confusing for people who want to improve more than anything and are given mixed messages.


4 thoughts on “Chronic Fatigue Syndrome/M.E. post

  1. Yes, the mixed messages around CFS are dire.

    The people I know who have CFS (and who have learned how to lead very normal lives in spite of it) would be screaming at you to stay away from the gym or anything that causes that glandular reaction. If you’ve had a relapse, you have to keep your activity levels below that threshold for months before you can very cautiously increase. If you go above the threshold it’s like landing on a snake in Snakes & Ladders, and by the way someone’s stolen all the ladders. You have to learn the knack of maintaining a constant activity level that’s always below your particular relapse threshold.

    I don’t know anyone who has improved by pushing boundaries, but I know people who have got much worse by doing that.

    I’m told Melatonin is useful for sleep, Amytryptyline for sleep and muscle pain (maybe even for depression too), Syndol for headaches and other severe pain. (I’ve used Melatonin and Syndol myself on occasion.)

    CBT isn’t much use. That is, it doesn’t do anything at all for the CFS. If you have something like depression or anxiety separately in addition to CFS (quite common), then CBT can treat the depression or anxiety. If you have depression purely as a result of the CFS (very common) then CBT won’t touch it. However, a therapist or counsellor is often good at providing general support.

    • hi, thanks for the comment.
      I know, it was too much in one go – just too big of a leap – I’d got it up to 20 mins in the gym once or twice a week – started with 5 or 10 mins, and before that I think I was just walking around near my house.

      Yeah I have depression too so when I’m experiencing a bad time with that I prioritize the depression everytime i.e. I exercise to stave off the depression as when CFS and depression are both present it’s 10x harder.

      Do you have some involvement with CFS treatment? It sounds like you’ve met more than your fair share of sufferers..

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