Mel “I’d be fine with the burning, if I just wasn’t so tired”

Neurologist “Well, if you think about how many peripheral nerves you have and how many of yours are inflamed, it’s no wonder you’re tired”

Mel “oh… yeah I guess that makes sense”

Fatigue, much like pain, is complex, multifactorial and very individual.  For me, it was probably the most debilitating aspect of my illness, and I couldn’t even describe it.

Broadly, fatigue may be physical – you just ran a marathon; or mental – you’ve been doing math problems all day or had an emotional upheaval. Or it may be a combination of both.

Factors that contribute to fatigue:

  • Chronic inflammation/chronic immune activation
    • There has been interesting research in the last few years on the cellular effects of chronic inflammatory processes. Probably future treatment targets (but who knows when?).
  • Pain
  • Lack of sleep
    • I have noted a couple of vicious cycles in chronic illness and this is one of them. You’re exhausted, but can’t sleep, then everything bugs you more so it keeps you awake. And the cycle continues.
  • Anxiety
  • Medications

Specifically, in neurological conditions:

  • Having to concentrate constantly on actions that used to be automatic (i.e. where you put your feet, are you actually sitting on the chair or did you miss?)
  • Constant processing of abnormal sensory information
    • I hadn’t thought of this until my OT said it – this may be a contributing factor to sensory overload (if you phone me when I’m in a shopping centre, I just can’t – there’s too much happening).
  • Autonomic dysfunction

Managing fatigue

  • If possible – treat the underlying illness
  • Pain management
  • Optimising sleep (this is a whole post on its own)
  • Medications timing, e.g. taking medications that cause drowsiness at night, or if you get a “hangover” from medication, moving it a couple of hours before bed time
  • Exercise
    • A cruel irony of chronic illness – exercise has been shown to help with fatigue in many chronic conditions. Not helpful when your limbs feel like lead.
    • I put this in the “be gentle, and just do what you can” basket. There will be days you feel up to going for a walk.  There will be other days where the mental effort to overcome the “limbs are lead” messaging is too much.
    • There will also be a trial and error process to find which exercise suits you now – I used to do a lot of high intensity PT, but it’s not for me anymore.
    • Tai chi, yoga and hydrotherapy have been trialled in multiple sclerosis (MS) and traumatic brain injuries.
  • Decompression breaks
    • Something my OT taught me, to deal with the sensory overload aspect.  It involves, every couple of hours, sitting in a quiet, dark room for 10 minutes.
  • Prioritising
    • At the end of the day, you’re probably going to have to prioritise activities.
    • The first time someone called me a workaholic, I was so shocked. I was shocked when someone called me a perfectionist too.  They were probably right though.  Having to admit that I was sick and tired, and having to make choices around work/life/health balance was a very difficult lesson.
    • I rearranged my work schedule, learnt to say no, and admittedly cancelled on many social events.
    • In the literature, they call this “energy conservation treatment”
  • Caffeine – not point denying it, I try to keep it in moderation.

Other strategies (I have not tried):

  • Cooling therapy (e.g. cooling vests)
  • Pulsed electromagnetic therapy
  • Blue light therapy
  • CBT

Fatigue management is a trial and error process – which is very difficult when you feel too tired to “trial” anything.  I have a very ingrained “show must go on” mentality and the fight between that and a fatigue so profound I can’t put it into words was exhausting on its own.  But I learnt that it’s ok to just put one foot in front of the other sometimes (and smile and breath).

😊 Mel

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