The more my FSHD progresses the more sleep becomes complicated for me. I’ve written before about pain, anxiety, and the long nights where my body refuses rest. Something new has crept in. I say it’s new, it’s been happening more and more over the last two years and is now a problem. It’s subtle, but it’s constant, and it’s becoming one of the hardest parts of sleeping with FSHD.
My body still remembers how it used to sleep. Most people toss and turn at night. I used to do the same. I curled into the foetal position, rolled from side to side, tucked my knees up, and shifted without thinking. Those movements were automatic, built on natural instinct, and found comfort for over forty years. They were part of the rhythm of sleep. You move, settle, adjust, and drift. You don’t think about it. You just do it.
I can’t do any of that now.
I sleep on my back. That’s mostly it. I either lie with my legs straight or with my legs bent. Neither feels natural. Neither feels like sleep. They’re simply the only options my body allows. The positions work because they hurt the least, not because they offer comfort. This movement needs changing three or four times a night as my knee and ankle joints end up in excruciating pain having not been moved.
There is a third option. I can be rolled on to my left side. Hannah rolls me over, adjusts my legs to put me in the foetal position, and then adds plush and cushions behind my back so I don’t collapse on to my back. I can only stay like that for an hour. It comes with several issues. My back muscle strength and core weakness curves my spine, causing significant pain that means I need to return to my former position. Doing so, however, also means that I’m not in the best position. I’m lower down the bed, slightly crooked, and then trying to sleep with the pain that movement has caused. I only tend to do this now when I can’t sleep and my body is screaming at me to turn.
I often wake up with an echo of what I used to do. My brain sends the signal to roll or curl, to shift one leg, turn the other ever so slightly, but the movement never happens. It’s a strange feeling. My body wants to turn, bend, face a different direction, and move in a way it can’t. The instinct is there, often deep in my muscles, but the strength isn’t. It’s like the ghost of a movement. The urge is real. The action is impossible.
My legs twitch as if they’re trying to tuck themselves up. My shoulders tense as if they’re preparing to roll. My hips try to rotate. Nothing follows. When I’m laying in bed, I can raise my torso or my legs up due to the profile bed controls, but to physically move is impossible. I’m a body in a bed.
I miss the foetal position. I miss the comfort of curling up. I miss the freedom of movement that most people don’t even notice they have. I miss simple things, like the feeling of turning and wrapping your duvet around you. I would tuck the duvet between my legs. One leg under the duvet and one leg out. These tiny habits made sleep better.
This isn’t unusual for FSHD. When the core, spine, and neck weaken, side‑lying becomes painful. The body can’t stabilise itself. Muscles that should relax tighten instead. The spine rotates. The neck drops. The hips pull out of alignment. Even when someone helps, the body rejects the position. It’s not stubbornness. It’s weakness. The body simply can’t hold itself where the mind wants it to be.
It leaves me stuck between two truths. My body wants to move. My body cannot move. That tension is exhausting. It’s frustrating, physically draining, and something I can’t fix. I’ve tried cushions, bolsters, wedges, and different angles. They help for a moment, but the moment never lasts. Pain follows no matter what. The body doesn’t reset. It endures.
I know others with muscular dystrophy face the same thing. It’s rarely talked about in the Facebook groups, but it’s real. Sleep becomes a negotiation between instinct and limitation. The brain remembers. The muscles do too. They just can’t act upon it. The result is a night full of urges I can’t respond to. It’s not sleep paralysis. It’s not anxiety. It’s the simple truth of muscle weakness and the loss of natural movement.
I wish I could do more. I wish I could roll, bend, or shift like I used to. I only have two options now, and neither feels like rest. They’re simply the positions that hurt the least. They’re the positions that keep me still enough to get through the night. They’re the positions my body tolerates, even if my mind doesn’t.
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