Damn you sleep my eternal foe

Okay, so sleep and fibromyalgia are not friends

So there are a lot of issues with sleep and fibromyalgia. I also have other chronic pain and vertigo, but seriously since I was young sleep and me have not been on speaking terms.

Okay, fibromyalgia and sleep are not friends
Yes, this is how I look when I sleep. Child-like and innocent and buried in glitter.

Here are some of the random things you can look forward to with fibromyalgia and sleep:

 

The ouchie, the flip, and the flop

People will ask from time to time, what is your favourite sleeping position. And I am like, well, I go for all of them several times a night and see whichever I finally pass out from sheer exhaustion in. Because it hurts. It just hurts in one position fairly quickly. So flip. And then that hurts. On stomach, then… well you get the point.

Sleep and fibromyalgia

What sort of hypnic jerk from hell was that?

So hypnic jerks occur in twilight sleep. So just sort of hovering in the cusp before actual sleep. A state which actually can cause a lot of funky things. But hypnic jerks are just annoying as all hell. You Finally get almost to sleep after Hours and then your leg spasms like a dog when running in its sleep. But with fibromyalgia look forward to your entire body spasming. Yeah, that will wake ya.

Did I actually sleep?

So we have non-restorative sleep. So 4 hours or 10 hours and you actually do not feel refreshed. At all. Like you never slept at all. And trust me, when I can, I will sleep in to ‘catch up’ on sleep. Yet, I do not feel any better doing that. I still feel like it wasn’t enough… except there tends to be more pain with more sleep, because I was in one position for too long.

More not-sleeping than actual sleeping

Without medication, it can take me 2 to 4 hours to fall asleep. And then I wake up repeatedly. Over and over. The night actually passes slowly. I have literally no concept of this deep sleep all night and waking up like no time had passed. I strongly envy my spouse for this quality of a perfectly normal sleep life. On the other hand, he cannot remember his dreams. Whereas I certainly do. With frequent wakings, you tend to remember a lot of dreams.

And now I am stuck in my body but also weirdly alert

Yeah, sleep paralysis. With fibromyalgia, it can be an insane struggle to sleep. I actually get severely sleep deprived without medication to help me. I have actually had nocturnal, bizzaro seizure-like events when I was severely sleep deprived which led to me being put back on my sleeping pill. But what usually happens is sleep paralysis. A lot of sleep paralysis. As in several times in one night. I just get ‘stuck’ in my body, because the brain has shut down movement, as it should, but you are ‘aware’ like you shouldn’t be. Now, this can come with hallucinations, because technically your not awake. So sort of dream-like things can happen while being aware of being stuck. I often get the feeling some Thing is staring at me. Sometimes I get the feeling someone is hugging me, tightly, and when I become aware in some way this is not my spouse I freak out and try to wake myself up, but getting ‘unstuck’ is tricky. And then when I do wake myself up, as soon as I go back to sleep it happens again. I actually have to get up, do something, then go back to bed and try again.

Yeah I do not snore

So sleep apnea is a real issue with fibromyalgia and that is something we definitely need to pay attention to. But I do not snore. Really. I’m serious. I may have woken myself up to the suspicious sound of someone snoring, which wasn’t my spouse, but I deny all knowledge of that person being me. I actually did have a sleep study done and I do not have sleep apnea, but this is good to determine, I do though have asthma and allergies which could -in pure theory- cause someone to snore. But not me.

And this does not feel right at all

So we can also sometimes have comorbid restless leg syndrome. And I do not have that. But I have had times with restless body syndrome. Sort of this agonizing sense you have to move because there is this powerful, intense, Sensation when you don’t. I have no idea if that is what restless leg syndrome feels like. I sometimes get this in my legs, or my arms, or literally my whole body. But if that is what it feels like, at least it isn’t frequent. But it is intense. And it is near impossible to get to sleep like that.

 

Other sleep and insomnia posts:

Fibromyalgia and sleep

Sleep hygiene and insomnia

Meta-analysis- Sleep disturbances and fibromyalgia
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2 comments

  1. A book–available both in print (hardcover) and audio–that might give you some additional insights into your sleep experiences is “Sleepyhead: Narcolepsy, Neuroscience and the Search for a Good Night” by Henry Nicholls. It is very up-to-date and is funny at times; I found it a very welcome addition to my shelf of books about sleep.

    Liked by 1 person

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