Tuesday, 19 December 2017

Sleep Wars: me v. my body - I think the body's winning

WARNING: What follows is one long whine, which I suspect will only be of interest to anyone suffering from Chronic Fatigue Syndrome or insomnia... or both.

I had a chat with a long-term CFS/ME sufferer earlier this year, during which he showed me his Fitbit phone app, tracking his sleep patterns for the previous week. He hadn't once fallen asleep before 10 o'clock in the morning, hadn't had any deep sleep on most nights, and hadn't had any sleep at all during the hours of darkness. For the past four years, my body has been trying to turn my night into day - i.e. it wants me to sleep during the day and be awake all night. As I've always been an owl rather than a lark, the temptation to give in has been powerful, but I've just about managed to resist - my body and I reached an accommodation whereby I got to sleep between 3 and 4 AM (usually nearer 4 than 3) and woke up no later than 11AM. Not ideal, but bearable.That all changed...

...in October, when Body decided to launch a full-scale campaign against night-time sleep, which has steadily increased in intensity. Body finally got what it wanted yesterday, when, following a sleepless night, I finally dropped off at 11am and woke up at 6:30pm. Doesn't half make you feel sleazy!

How did Body finally overcome my resistance? The attack was five-pronged. It started by reintroducing a symptom I was rather hoping I'd seen the back of, i.e. stomach pains which start the minute I get into bed and continue until at least five in the morning. These have something to do with fructose intolerance. The NHS has told me I don't have a problem with fruit, but if I were to eat an apple, an orange and a few grapes right now, I'd be writhing around in pain by midnight (I know this, because I've tested the theory). Apart from bananas (which are relatively benign), I haven't eaten a piece of fruit since I undertook the above-mentioned experiment two years ago. But it now seems the fructose content of fruit jellies, yoghurts and fruit-flavoured infusions (i.e. those weedy hot drinks I'd started taking at night to cut down on my caffeine intake) are enough to disrupt my guts - as for fruit juice, the bottles might as well be sporting a skull and a government health warning as far as I'm concerned.

So, I cut out all fruit-related products about two weeks ago - only to suffer madly itching lower legs, staring the moment I got into bed. I've had bouts of this for years, and it appears to be a reaction to standard washing powders - which we no longer use, so God knows why it flared up again. That lasted a couple of nights, after which, thanks to a bottle of Eurax lotion and a handful of itch-muffling antihistamine tablets, it eventually abated. Got to sleep - blissfully - by two o'clock (for the first time this year), only to be woken up by restless legs an hour later. Restless Leg Syndrome is an actual thing: it feels as if your calf muscles are constantly contracting. Quinine can help, so I've taken to chugging down Fever Tree tonic water at bedtime - delicious, but it unfortunately stopped doing the trick after a couple of weeks. Simple stretching exercises can also make a difference, so I do five minutes of those before going to bed - but they appear to have stopped working as well.

Three nights ago, I was revisited by another occasional affliction - nerve pain in the toes. It's always affects a single toe, and it's a different one each time. I get this about two times a year, and it seems to have something to do with taking more exercise than usual. The pain is very localised - and the only thing that quells it is the antidepressant drug, amitriptyline (it seems that, while antidepressants have a patchy record when it comes to curing depression, they have useful side-effects). Amitriptyline leaves me feeling like one of the walking dead the next day, so the nerve-pain has to be really bad before I'll take one: this time, it was really bad.

As for prescription sleeping aids, I've tried Melatonin, which time-zone hoppers use to alleviate the effects of jet-lag (it can be bought over the counter in most countries) - but, no matter how small the dose, it leaves me utterly zombified the next day. I routinely take a handful of non-prescription sleep aids every night, but, for all the good they do, I'm not sure why I bother (mind you, I didn't take them last night, and I was so wakeful by 5am that I gave in and guzzled them all down).

To summarise - the four-pronged attack on sleep consists of (a) stomach pain, (b) itchy legs, (c) restless legs, (d) nerve pain, (e) a bad reaction to some sleep aids - or no reaction at all to the rest.

I've been online, spoken to doctors, and I've tried everything that's been recommended, i.e. going to bed at the same time every night (because "sleep is a habit"); having a warm bath before bed - or avoiding a warm bath before bed; not taking any caffeinated drinks (tea, in my case) in the three hours before retiring; avoiding backlit screens - TV, iPad, computer - for two hours before bed; taking regular daily exercise, etc. Been there, done that, no effect. The latest piece of advice I've had is not to read anything "stimulating" at bedtime. Sadly, I've already had to abandon reading classic novels at night for the time being, because even the ones I don't enjoy are stimulatingly annoying. There's the conundrum - I haven't been able to go to sleep without reading something first since I was about eight or nine. And there's nothing that wakes me up more effectively than reading something dull - and there's nothing as guaranteed to keep one fully awake (and thoroughly depressed) as lying in bed staring into space for hours on end.

What makes this all so bloody irritating is that the only positive aspect of my own particular flavour  of CFS/ME is that I don't suffer - as many fellow afflictees do - from night-time muscle and joint pain, which would at least explain why I'm finding it so difficult to get to sleep. I long ago reached the conclusion that, as I'm tired all the time, my system doesn't receive - or misinterprets - the normal signals telling it to start shutting down for the night. As I've also given up hope of some miracle cure - i.e. a magic bullet pill or potion or a miraculous diet - and now accept that any improvement will be the result of incremental changes to my routine, I suspect that sorting out my sleep patterns without recourse to artificial aids might be the first step to getting better.

If regular visitors to this blog have been wondering why posts have been so infrequent of late,  well, now you know.


  1. Oddly enough, this morning I was listening with half an ear to a programme on radio 4 about this very problem. And one man spoke of insomnia plus restless leg syndrome. If my memory is right, I think he had a course of Cognitive Behavioural Therapy (Insomnia) and found it made a real difference. Maybe you could get the programme on Catch-Up.
    I am so sorry you have this infuriating and debilitating problem. Please ask Sara to give you a hug on my behalf.

    1. Thanks, Helen - my brother has also recommended the programme, and I'm about to listen to it on iPlayer. I suspect the NHS is about to introduce me to the delights of CBT in January.

      To be honest, my wife could hardly be more supportive or patient than she has been: if I were her, I'd be tempted to slap my face on a regular basis while shouting "Pull yourself together, you useless wimp!" Fortunately, that's not really her style.

  2. On the contrary I'm sure this piece could enlighten doctors and sufferers alike.
    Have you tried swimming-counters the effects of gravity, tires you out, relaxes one all at the same time?

    1. Boringly, just getting to and from the nearest pool would eat up my energy quotient for the day, while the actual swimming would result in two or three days of utter exhaustion - and I still wouldn't get to sleep until five in the morning at the earliest! One sure sign of CFS (and possibly the most maddening thing about it) is that any but the most moderate exercise not only doesn't help - it actually makes things worse, because the body takes so long to replace used energy What I've found is that doing nothing is bad for me - but doing too much is even worse! Bloody ridiculous situation.

  3. Sorry to hear that. Restless leg syndrome might be helped by a daily doze of iron tablets.

  4. Salvatore Bonpensiero22 December 2017 at 10:21

    Sleep is like William Goldman's opinion on Hollywood :

    "Nobody knows anything".