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As the article (in the start of this topic) “There’s a misconception that amyotrophic lateral sclerosis (ALS) is not a physically painful disease. That’s true on one hand because ALS does not directly cause pain. However, it’s also false because the disease does result in muscle problems that can be very painful.”
One of the first questions I’m asked at every ALS Clinic visit is: “Are you in any pain today?” – – so, not all neurologists share the ALS-no-pain mindset.
I did experience pain in my first two years; much like the 4 types of pain described in the article. I had sudden “zingers” in my feet and lower legs – – nerve associated, that’d startle me or even cause the foot to jerk. I had a constant pain of tightness in my leg muscles. And then, there was the “hum.” My body had this silent hum (but I could feel it) like I was a piano with all the strings pulled way too tight. It went away when I slept, but returned within 30-sec. of waking.
Pain is different for everyone. We each interpret it and deal with it differently. Mine was there, but not debilitating. I didn’t feel it needed medication to mask it, instead as the article recommends, I tried my own methods:
Nightly, I’d massage my feet & toes adding range-of-motion movements. I did gentle leg and body stretches. And practiced mental relaxation, mindfulness, and positive self-talk. I also looked at my day and tried to alleviate times when I was over-taxing muscles… like, water-walking in the pool was relaxing – – but getting into and out of a bathing suit plus, in and out of the pool – – wasn’t. I switched to using a recumbent bike to give my legs gentle exercise. Little things like switching from a hand-held to a electric toothbrush gave my hands a break.
I don’t feel the tightness anymore and the “hum” has disappeared. I suggest you help your medical team identify what and where the pain is coming from, and together work to help your body find the calm it needs.