How well do you sleep?

[Dagmar]

I always figured it was logical that newly diagnosed pALS didn’t sleep well (who wouldn’t lay awake at night worrying?) so, why bother studying it? But, after our 1st year pALS experience different sleep patterns. Some wake up from pain or muscle spasms, others still worry.

I’ve found that doing ROM exercises during the day helps my muscles relax at night. I sleep a solid 8-1/2 to 9 hours nightly. What are your experiences?

[Kim Belden]

Hi Dagmar,

As I’ve progressed, I’ve noticed changes in my sleep patterns.

Very early, I was still working and didn’t notice any difference.  I was always early to bed and early to rise.  I could still maintain a fair amount of activity.  My runs turned into walks but I still swam and did many activities.

About a year in I started getting lower back pain.  I was able to break the pain cycle with about three months of opioids.  During that time I needed more sleep but could still fall asleep.

A year later I fell (doing something stupid) and sprained my ankle.  I had just put in an offer for a new condo on the beach and had not yet sold my home.  Then a hurricane forced me to evacuate.  All this time I should not have been putting weight on my ankle but I did just to push through.  As a result, my ankle was very painful and the gait threw out my back again.

From that point on I needed to take muscle relaxants along with an antidepressant, both of which helped with sleep.  Both injuries seemed to recover but I still had minor pain in both areas.  In 2018 my right knee contracted and I went to PT.  That pain is still with me although I can now straighten it out.

Since 2018 I’ve needed more sleep.  If I don’t get eight hours, the pain will increase.

This year I hurt my same knee and the pain was excruciating.  My PM neurologist put me back on a small dose of narcotics (I stayed on the muscle relaxant all these years) but, since February, I’ve had horrible pain in my hip, back, and knee.  Some of it might be due to prior injuries playing sports but it came on suddenly.  The MRI of my knee showed a few things but, in Mayo’s opinion, nothing that required surgery.

I had to add melatonin to my nightly cocktail.  The pain sometimes wakes me up.  I have nerve pain in my left foot so I have to sleep with a special ice sock or the pain won’t let me fall asleep.

I’m one of the rare cases where the pain is the most disabling part at this point.  I use a rollator inside and a PWC when I leave the condo, even for short distances.

I have very few upper motor neuron symptoms so spasticity is not a factor.  Most nights I wake up multiple times since I’m a big water drinker and don’t believe in depriving myself of water just so I’ll sleep through the night.  Also, stretching makes my pain worse.  PT makes my pain worse (I’ve tried it four time with the same result.).

With the meds and lifestyle modifications, I can usually sleep 7.5-9.5 hours per night with two wake up cycles.  I do get the full cycle of sleep multiple times each night and feel rested when I’m up for the day.

The pool does help but, at this point, I need a day or two between going in.  I had to give up yoga, tai chi and other body work due to the pain.  I’ve even consulted professionals but nobody can explain why ROM makes me hurt more.  I do have good ROM because I can still move and I don’t have spasticity.

Everyone’s different.  I’m lucky to have very slow progression but unlucky to have nerve pain.