Fibromyalgia and Sleep – The Cause and Effect and What it’s Like

Its a basic equation. Every body needs sleep. During sleep we go through ‘cycles’ of activity in our brain when different things happen. Everyone has heard of REM sleep, for instance, as the part of the cycle where you dream.

People with fibromyalgia do not reach the deepest level of sleep. This is the part of the overall cycle where your body repairs itself, when particular hormones are released to make these essential repairs.

I think everybody knows what its like to be tired.
I think everybody knows what it feels like when you have overdone physical activity and have your muscles ache.
And I think everybody knows what its like to pull/strain/tear a muscle.

But most people feel better after a good night’s sleep or two. Simply because, normally, the brain works during sleep – or to look at it another way, it uses sleep – to rebuild and repair and restore the damage done to the tissues in the body from the day.

Imagine……..just for a minute, call this feeling up and remember it…….the feeling of exhaustion, of over worked and over used muscles.
The deep ache of pure fatigue simply because you are sleep deprived.

Now imagine it every day. Day after day after day after day.

That is one part of how people with FM feel.

Our muscles also tear more easily. Someone wanting to bulk up or build muscle will lift weights, for instance. They know the burn of lactic acid build up until the body removes it, and the muscle tissues repair and strengthen……during sleep.

Someone with FM can stand up from sitting….and tear their stomach muscles. They can pick something up……and tear muscles in their arms, shoulders, back. Because their muscles are tight to begin with.
I once lifted a paper file with about five pieces of paper in it and felt the muscle at the top of my forearm tear.  It was about 5 years (seriously) before that muscle stopped giving me jip.

We burn the ‘wrong’ type of fuel in our cells to produce energy. We cannot effectively get rid of the build up of lactic acid the way other people do.

So our bodies do not repair the way they should. They cannot repair. Because we do not reach that precious, essential deep level of sleep.

Yet we could compete in the olympics if sleep was a sport. Sometimes we could sleep 20 hrs out of 24 – if allowed. If it were practical.
Sometimes during a flare up, we have no choice.

I have fallen asleep while talking on the phone, whilst in the middle of actually doing something, when I have been in a flare up. It’s a case of “don’t blink in case you nod off”.

‘Narcolepsy’ rules us, ok!!

But it doesn’t repair us. It doesn’t refresh us.
I came to think of that kind of sleep as an escape. While at the same time hating the waste of my time, the “weakness” of it.

Other people just do not get it. They cannot grasp the fundamental cause and effect, the basic mechanisms involved.

But don’t forget……sleep deprivation has long been used as a form of torture. Because that is what it is.

Most of this year my sleep patterns, due to stress, have swung far the other way. Snatches of 2-3 hrs in maybe every 12. Not enough. Not by anyone’s standards.

And I have tried just about everything.

Imagine the effect this has on my fibromyalgia. It is not good. Since the beginning of March I have had two runs of 7-10 full nights. Oh, and one night back in early May with someone sleeping alongside me.

I am almost craving that state of not being able to keep my eyes open long enough to finish a sentence!!

I need some proper sleep over a sustained period of time.

In the last 36 hrs I have had 3 snatches of 2-3 hrs. It is not accumulative, unfortunately.

So please, if someone you know has fibromyalgia and they say they are exhausted. Even if they have spent the last week in bed. It is because they are!!
They are not making this up. They are not exaggerating. They are not being weak or pathetic or useless.

Chances are though, they feel like they are pathetic and useless.

But it is NOT our fault. We are not being lazy. Every day is a struggle.
Fibromyalgia is not nice. It does not play fair. It isn’t even terribly predictable at times. It steals our wellbeing and our sense of self. It won’t kill us, but it tries to rob us of everything else.

Even one of the most basic of human needs……a decent night’s sleep.