Living With Pain In A Body That Will Not Settle

Pain has been part of my life for thirty years. I thought I understood it. The aches felt sharp and heavy and I believed that was as bad as it could get. I was wrong. The more my FSHD progresses, the more pain changes. It’s now deeper, constant, and woven into every part of my body.

I used to describe my muscles as feeling clamped. It was as if something pressed down on them and became tighter. The more I did, the more the clamp tightened. That image no longer feels enough. I feel every muscle now. It’s a strange thing to say, let alone imagine. I feel the painful pulse in each muscle, from finger and toe, from calves to my neck, and even when I smile. It sits inside the muscle, inside the fibres. Throb. Pulse. Deep ache. Building.

FSHD pain is complex. Research shows that people with muscular dystrophy experience a mix of nociceptive pain from strained muscles and joints, neuropathic pain from irritated nerves, and central sensitisation where the nervous system becomes more reactive over time. It explains why the pain feels layered, why it spreads, and why it doesn’t switch off.

The joint pain with FSHD is relentless. It’s a grinding ache deep within the shoulders, knees, elbows, and lower back. It builds throughout the day and settles in as if it owns the space. My knees are the worst. They feel solid and hard, as if the bone itself is heavy. The pain is sharp and deep and it doesn’t care if I’m resting or moving.

This doesn’t stop at night, despite my magnitude of medication that should help. Where I cannot move myself, the lack of movement causes its own pain. Many people with FSHD experience static posture pain or immobility induced joint stiffness. When muscle weakness limits your ability to make small adjustments, your joints carry the static weight of your body. Local circulation is reduced. Joint cartilage is starved of fluid. Pressure builds and builds.

Joints rely on movement to pump synovial fluid through them. That fluid is the body’s natural lubricant. When you’re still, the fluid stops circulating. The joint feels stiff, locked, and intensely pressurised, particularly weight-bearing joints. The ache becomes suffocating. It doesn’t fade until you’re adjusted.

Even when I am resting, my weakened muscles are working hard to stabilise my skeleton. Remaining in one position causes these muscles to cramp and lock. It creates a frozen feeling, although inside everything is straining. It’s a strange contradiction. On the outside, I’m lying quietly. Inside, nothing is quiet.

This is where the feeling of being trapped has grown. When I wrote about it before it was from a place of fear and vulnerability. Now it’s a reality. I live inside a body that will not obey me, that hurts whether I move or stay still, and has narrowed my choices to the point where even comfort negotiated.

People often assume that being in a powerchair solves everything. It doesn’t. I might not be walking, but I take the physical consequences of movement all the same. Nothing is flat and perfectly accessible. Pavements are patched, filled, and repaired. Every surface is uneven. The chair may be built and shaped for me, but I still get knocked and thrown about. My legs are strapped to stop them collapsing. My back and core cannot hold position. Every journey is a mountain of bumps and divots that make my body jolt.

Sloped kerbs are never flat. There are still two inches steps that the chair must climb and fall. My back takes the impact. My neck strains to keep my head upright. The more it strains, the more it twitches. The twitching sends pain across my shoulders. The same deep, rooted pain that never leaves. People joke about jumping on the chair for a ride as I’m lucky not to walk. My body doesn’t rest. I may be sitting, but my body is running a marathon. There is nothing lucky about it.

The straps keep my legs still, which prevents injury, but the lack of movement creates its own pain. The more I do, the more it costs. I take days of bed rest to recover. Some days I can’t so I negotiate resting hours. If I move or don’t move, pain still comes. There is no middle ground. I am either trapped in the chair with supports holding me together or trapped in a motionless body that grows pain through inaction.

Living with this kind of pain affects everything. It shapes my days and my nights. It changes how I think, feel, and move through the world. It’s the part of my life people don’t see. They see the wheelchair, smile, and presence, not the hours counting muscle pulses that refuse to be quiet.

This is my body, but I carry on regardless. Pain is constant. So is the choice in how it’s managed. Paul says (Corinthians 12:9-10) that he would boast in his weakness so that Christ’s power could rest on him. I understand it. Weakness and pain are neither failure or punishment. He’s not celebrating or hiding suffering, but recognising that in the hardest moments self-reliance isn’t enough. Living in pain strips away pretence and leaves you with reality. I didn’t chose pain, yet it’s the place where I can say who I am and how I live.