Some people diagnosed with ALS do not experience much pain. Well, there is the pain of having an incurable disease that only results in death. That ain’t exactly fun. Others have muscle cramps and cramps can be painful.

From the NIH:

The progressive loss of upper and lower motor neurons in amyotrophic lateral sclerosis (ALS) causes a rapidly advancing paresis and atrophy of skeletal muscles which is occasionally combined with spasticity.

And so the pain begins.

Since ALS causes all sorts of muscle and nerve issues, pain shows up in one form or another for many with the disease. One of my early symptoms was abdominal muscle cramps. Painful? Only when coughing, sneezing, or bending over to tie my shoes.

That was then and this is now.

Pain has been shown to be associated with a decreased quality of life and with a higher rate of depression.

Duh.

Some of my muscles have begun to stiffen and cramp more frequently. That causes more than moderate pain and until the muscles are stretched and moved and relaxed the cramping pain can last for a few hours; disrupting sleep and making for some very uncomfortable moments.

How uncomfortable?

I’m writing this at 4:30 am. Thanks to a series of shoulder and neck cramps that started about 3:00 am and have yet to diminish I am in one of those uncomfortable moments.

Some moments last longer than others. What’s going on?

Musculo-skeletal pain may arise as a result of stress on bone and joints that have lost their protective muscular sheath due to atrophy. In addition, pain was found to be associated with muscle contractures, reduced joint mobility, muscle cramps, spasticity, and skin pressure caused be immobility

Simply put, the longer a person has ALS the worse it gets. Some die within a couple of years. A few have miserable lives that last a decade or more. Most succumb to respiratory failure within three to five years.

Stiff muscles that cramp and can cause pain become more common over time.

My time has come.