It's Complicated

When people ask about sleep I usually explain that I have insomnia, which is true but that only scratches the surface of my sleep disturbances. 

I do have trouble falling asleep and staying asleep, the classic definition of insomnia. But I also have a shift sleep disorder in which my circadian rhythm or internal clock has become confused. Some people experience this when they work night shifts or extended work shifts like 24 hours on and 24 hours off. I experience it as feeling awake in the late evening and through the normal night hours and feeling tired during the daytime hours. I fall asleep around the time people are waking up. For me they have labeled it excessive daytime sleepiness.

We aren't even to the cake yet. One of the hallmark symptoms in Fibromyalgia is alpha wave interruption in delta wave sleep. Which means the REM cycle of sleep which is responsible for healing, restoring function to organs systems tasked during the day, and energy production, is constantly interrupted by bursts of awakened brain states. I don't get restorative sleep even when I'm technically sleeping. 

Sometimes even though we suffer from insomnia we can also suffer from bouts of hypersomnia, sleeping for long periods of time. I swing pretty erratically from one side to the other, but even when I sleep for 14 hours I still don't experience restorative sleep, and feel like I haven't slept at all. Often I feel somewhere between awake and asleep where my body feels catatonic while I am mentally aware of my surroundings.  

During particularly bad flares I suffer from orthostatic intolerance and am incapable of maintaining an upright position. So I might sleep for 14 hours only to get out of bed and not be able to remain standing and return to bed. This is particularly frustrating because laying down too much causes pain and de-conditioning, which unfortunately happens very fast and can unravel months of conditioning in as little as one week. you might be asking why don't I just sit down and work slowly from there? The problem is that my head is above my heart and that causes a complex autonomic reaction that makes it impossible to remain that way. I feel dizzy like I might pass out, with weak limbs, my entire spine is made of pudding with not an ounce of strength to hold it up. It's like a G-force bearing down on you, crumpling you like a soda can -and that doesn't even really do the feeling justice. 

Even though I go through flares like this that can last weeks or sometimes longer, the feeling always seems to back down to level where I'm capable of standing again and rebuilding some of my strength. For some, that feeling never goes away and they are stuck in bed for years. I am grateful that hasn't been me. And I keep exercising regularly so that when these strike I have some muscle to loose, because I always do, and it gets harder and harder to build it back up. 

So when I talk about Fibromyalgia and I tell you I have insomnia or sleep disturbance; this is what I really meant. Nothing about Fibromyalgia is easy to explain.