The sensation of a hum was one of my early symptoms of ALS

Hmmmmm. That’s what my body feels when it’s doing its “humming thing.” It’s an all-over buzzy sensation that I chalk up to being another quirky symptom of my ALS. It’s a feeling I’ve never mentioned during my ALS clinic visits, mainly because I want to keep the visit rolling along and I know that nothing can be done about the hum. The clinic staff are more interested in pain.

“Are you in any pain today?” It’s one of their first questions, and for the past 14 years, my answer has always been a confident, “No.”

Oh, but many times I’ve wanted to blurt out, “But my body does hum.” Knowing the fun-loving personalities of my clinic staff, they’d ask me something like, “Does it hum in the key of G?” And we’d move on to other topics.

Pain is not a common symptom of ALS, and I’m grateful I haven’t had any. However, I’m aware that many ALS patients do experience aches and pain from day-to-day living with the condition. Pain can be the result of muscle cramps, contractures, the extra strain our weak muscles put on our joints, or pressure sores from sitting or lying too long in one position.

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My own hum

I experienced bodily discomfort during the months when my ALS symptoms began, such as the intermittent twitches in my thigh muscles, which I watched with curiosity. But the early-morning cramping in my calves became downright maddening.

At that time, I believed the suggestions I found online that exercise worsened ALS, so I quit my yoga, swimming, and daily walks. That lasted only about two weeks because I twitched and cramped even worse. My ALS clinic physical therapist advised me to return to exercising with gentle stretches and range-of-motion movements. Ah, relief.

But I also began to notice that my body was humming. It’s not a sound or a visible tremor, but a feeling. I describe it as if a piano has its strings pulled way too tight, so tight that they can vibrate on their own.

It comes and goes

When I wake up in the morning, I feel nothing. But within moments a small vibration throughout my entire body begins and grows to a crescendo later in the day. Sometimes the feeling disappears when I’m exercising, watching TV, or focusing on a project, but otherwise it’s always with me as I pull up the bedcovers at night.

The official name of this buzzy, humming sensation is pallesthesia, and it’s attributed to general conditions such as nerve irritation, neurological disorders, mental stress, or lack of sleep. All these conditions are shared by people with multiple sclerosis, Parkinson’s disease, and possibly ALS. Medical experts are still studying pallesthesia, which tells me it’s something we have to learn to live with a little longer.

I often wonder if other ALS patients have the humming feeling as well. If so, let me know in the comments below. I promise I won’t suggest we get together and harmonize our hums. OK, OK, allow me a little ALS humor.

Let’s continue to help each other learn how to live well with ALS.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.