Why Is Music So Hard for People With ME/CFS?

Why Is Music So Hard for People With ME/CFS?

by Jody Smith
Oh, how I love music! This magic can lift our spirits and calm our weary minds. Maybe it can even help us heal. Goodness knows, we who live with ME/CFS need these things. We're probably not getting much of this elsewhere. So if music is so good for us, why is it so hard to have it in our lives? Why, for many of us, is music so exhausting?

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Sorry, I have no real answers to these questions. Just more stories.

I think I was a fairly typical adolescent of the 1970s. I spent as much time attached to my little transistor radio as I could. Like many teenagers, I didn't have a great deal of control over my life. I didn't like school and I immersed myself as much as possible in a world of music.

I spent time with friends who were musicians. I lived with a musician for five years starting in University. We often had piano keyboards and drums in our living room. People would just pick up an instrument and break into song at the drop of a hat. And harmonize.

My happiest times were spent in folk musician coffee houses and University pubs where my favorite musicians were playing.

Over the decades I've listened to 45s, to albums, then tapes, then CDs. Music of a variety of styles created the soundtrack to my life. As an adult I listened to music in my living room, in my bedroom, and in the car. I sang in my church's worship team. I played my piano at home. I sang as I worked and when I went out for walks.

Music was uplifting. It was soothing.

But when I got very very ill the music stopped. Now, it wore me out too much to listen to it. I certainly wasn't singing or playing an instrument. In the days when the ticking of a clock was enough to chase me out of a room, even beautiful music seemed more damaging than revitalizing.

It left me overwhelmed with dizziness and nausea. Vertigo tipped my world. Mental chaos and fragmentation caused my thoughts to fly like shards in all directions.

Even when I improved a bit years later, and could listen to some music once again, I would pay for it for hours afterward. I had to be prepared to sacrifice the rest of the day, rendered incapable of coherent thought or getting anything done.

It was a tragic, heartbreaking loss. Not only was it a loss of beauty and transcendence it was a loss of a piece of myself. Music had been a part of me. And now I had to shield myself from it. Music now fell in the same category as static, a blaring television, sirens or yelling kids.

I was so vulnerable to sensory overload that music anywhere in the house had to be turned off. Not turned down. Off. Completely. Silence reigned. I needed to wrap myself in it and protect myself from sound and mental effort.

The music system in the living room went unused. The one in my bedroom gathered dust. My electronic keyboard hunkered down in a closet. CDs and tapes were piled, neglected, in a box in my linen closet.

The endorphins, the uplift, being transported into higher realms of restoration and rejuvenation ... the magic of these tools were lost to me now. Instead of bringing rest and invigoration it left me drained and vibrating.

I asked some friends who are part of our chronically ill community about their experience with music. Names have been shortened to initials for privacy considerations. Here are some of their observations:

K. is not able to listen to music very much because it causes sensory overload. She said, though, that this is improving now after many years and she is hopeful. And K. encourages those who can include music in their lives to do so because it certainly can be good for those who can tolerate it.

D. has no luck with music anymore because it overloads her sensory system. She used to love to sing in the car. If D. is in a remission or on a adrenaline high she can manage to sing loud, happy songs and find joy, but then she has the crash.

R. finds that some music may be emotionally draining due to its associations with certain memories or people. She likes to sing along to her favorite songs but unfortunately, this can require energy that R. really can't afford.

C. has often played the piano as a form of emotional therapy. But, she finds that it usually takes a lot of playing before she gets the therapeutic benefit from it.

V. rarely listens to music anymore. She finds that most of her Latin American taste is too jarring now to her senses. V. does sometimes listen to beautiful Celtic music in the mornings as she do housework or chores. She find this to be immensely soothing.

This is obviously a small pool of opinions but I find it to be a useful one. Each person has a slightly different situation. Seems suitable for the ME/CFS community.

I also know a couple of people who are so severely ill that they were not typing statements for my mini-poll. Their extreme symptoms are such that they can tolerate no sound, let alone music. And they'd best not be using up their tiny energies talking or typing with me or anyone else about it. But since I do know about their situations I want them to be represented here.

Then there's me. I have worked my way up from needing complete silence a decade or so ago, to being able to carefully determine when and how much music I can handle. I don't listen to it, sing it or play it myself on my piano very often. Small doses and strategically timed.

I can't listen to music and focus on anything else at the same time. For me there is no such thing as background music. So there's no soft music on while I'm reading a book. Maybe I can knit if it's a simple pattern. Or maybe I can put an album on the record player while I'm making dinner.

But I always know that I am spending energy and mental sharpness that is in short supply. I know that my muscles will get clunky and shaky if I have estimated wrongly. I might lose my train of thought for the whole evening. I may suddenly realize I am completely done for the day.

A year or so ago I discovered that I could drive with the radio on. Cranked it up. Sang along. Realized I was flooring it with a lead foot responding viscerally to the bass, and had to slow down. Felt normal. Felt great. Words can't adequately express how awesome this was for me. I just know it feels like having crawled through the desert to an oasis.

Are you able to include music in your life?

Photo: Pixabay
 
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Comments

On my best days I listen to music all day, it feeds my soul. I know I won’t sleep that night because chances are my brain will feel like it’s vibrating. I will crash and likely take a week till I am better but man is it worth it. I love music so much and miss concerts. :(
 
On my best days I listen to music all day, it feeds my soul. I know I won’t sleep that night because chances are my brain will feel like it’s vibrating. I will crash and likely take a week till I am better but man is it worth it. I love music so much and miss concerts. :(
Heartl,

I so know what you mean. And when you know you're going to pay the price, get all you can out of that music while it lasts.
 
I grew up in a musical family, played several instruments, sang, music was a natural part of my life. My brother is a professional musician, one sister is an accomplished vocalist singing in musical theater. Later-on I enjoyed the music of my children, each played an instrument through school, several were in University groups. I loved playing instruments with them, often I was on the piano, or perhaps a horn, or guitar. We sang together.

As I became sensitive to sound, I fought hard to keep music in my life. On a good day I could still listen to a Pandora station or even play piano for a half hour or so, which felt great, but I had to be careful to stay low-key while listening.

Many years later, the children are grown, the house is quiet, and I now have to wait for a good day to listen to more than a few minutes of music. Usually soft, calm music.

A Yamaha music keyboard sits about two meters from my bed, mostly quiet. Full of memories. Looking at that keyboard reminds me of how important music has been in my life.

Every now and then, on a good day, music comes back for a few minutes, I can listen or even play a song again, and smile, that while this disease has broken me down, it has not won completely.

One of my motivations to find a path to recover, is to bring the joy of music back into my life fully. Never give up hope.
 
Music was always a big part of my life, both listening and making it. However, for a long time the energy needed to absorb the information of music along with sensitivity to sounds in general made it impossible to even listen to it. This was also during the time that it was tough to understand simple conversations, and even watching TV was very tough to comprehend. Data, whether spoken word or music, flowed too quickly for my brain to digest. Temporary stuttering, dyslexia, difficulty finding words or even having the energy to speak them, no longer being able to remember names of close relatives and friends were all part of this picture. I was so nutrient deficient that my metabolic pathways and mitochondria were not able to function properly to provide the energy needed to digest and absorb information.
 
I was just thinking of music this morning. I realised how little I listen to it now, and am very aware now of how my voice has gone croaky - previously I could sing pretty well!

I used to play a keyboard (not very well), and tin whistle and recorder (moderately well) and listened to a wide range of rock, pop, folk, classical...

I used to have people round on my birthday and play music on the music centre out of the window or on the computer, pretty non-stop - until 3 years ago. Then I had a sudden worsening, which seems to be increasing (although I'm not sure) and I can't even rememember how to do a lot of things. I'm forgetting people's names too - like neighbours.

I do hope my ability to enjoy music comes back more often...
 
SIEDs starts as a viral infection and this infection gets into the nerves. When it is in motor nerves and muscles it causes fasciculations in the early stages (twitching) due to the attack from the immune system to try to kill it. Whatever nerves this tissue is in will become sensitized and trigger a pain response.

In the eyes you get photophobia. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606068/
In the ears you get sensitivity to noise.
Etc.

http://www.instituteforchronicpain....in/what-is-chronic-pain/central-sensitization
 
I am very grateful not to have any negative effects with music. Well, with the music I love best anyway.
The only music that brings me any comfort, joy, sometimes sweet tears, peacefulness or help at all is my favourite classical, and my taste is for mainly gentle music.

But as time goes by there are some composers I used to like and can no longer stand! I can no longer tolerate tenors or sopranos singing opera! It is the most awful din to me now, and unbearable.

I can tolerate very few singing voices any more unless they have a spot-on pitch and a pure light sound.
So I like orchestral, or piano music more nowadays and for some strange reason have developed a fondness for the Oboe.

I used to quite like some Rock music. But the energy of that is way too much for me nowadays.
Other "pop" songs....well rarely now, but now and again I hear one I like. But rarely listen to that channel on radio now.

Music doesn't drain me when I listen to what I most like. Or give me pem. I find it uplifting and it is soothing and a comfort to me.
But one most horrible thing can happen sometimes, when I can't "find my Soul" in it, and the music is just a series of pleasant sounds. But that often passes off in a few days. I hate it when it happens, and it seems to be related to extreme exhaustion during a relapse.
 
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When I became ill I had to change the kind of music I listen to. Before that I mostly listened to classical and classic rock. After I got sick I could not listen classical from before the romantic era. And instead of rock I started listening to new age music.
 
I grew up in a musical family, played several instruments, sang, music was a natural part of my life. My brother is a professional musician, one sister is an accomplished vocalist singing in musical theater. Later-on I enjoyed the music of my children, each played an instrument through school, several were in University groups. I loved playing instruments with them, often I was on the piano, or perhaps a horn, or guitar. We sang together.

As I became sensitive to sound, I fought hard to keep music in my life. On a good day I could still listen to a Pandora station or even play piano for a half hour or so, which felt great, but I had to be careful to stay low-key while listening.

Many years later, the children are grown, the house is quiet, and I now have to wait for a good day to listen to more than a few minutes of music. Usually soft, calm music.

A Yamaha music keyboard sits about two meters from my bed, mostly quiet. Full of memories. Looking at that keyboard reminds me of how important music has been in my life.

Every now and then, on a good day, music comes back for a few minutes, I can listen or even play a song again, and smile, that while this disease has broken me down, it has not won completely.

One of my motivations to find a path to recover, is to bring the joy of music back into my life fully. Never give up hope.
It's good to hear from you Kurt:) I'm sorry that you've had this experience too. It's good to have your keyboard out where you can see it. Even if it might seem to be mocking you at times. I hope you are able to completely reclaim your music and have it restored to you.
 
Music was always a big part of my life, both listening and making it. However, for a long time the energy needed to absorb the information of music along with sensitivity to sounds in general made it impossible to even listen to it. This was also during the time that it was tough to understand simple conversations, and even watching TV was very tough to comprehend. Data, whether spoken word or music, flowed too quickly for my brain to digest. Temporary stuttering, dyslexia, difficulty finding words or even having the energy to speak them, no longer being able to remember names of close relatives and friends were all part of this picture. I was so nutrient deficient that my metabolic pathways and mitochondria were not able to function properly to provide the energy needed to digest and absorb information.
Sounds horrible BeADocToGoTo1. I sympathize. I also went through what felt a very long time where language and processing problems of all kinds cropped up. What a nightmare. I hope things have continued to improve.
 
I was just thinking of music this morning. I realised how little I listen to it now, and am very aware now of how my voice has gone croaky - previously I could sing pretty well!

I used to play a keyboard (not very well), and tin whistle and recorder (moderately well) and listened to a wide range of rock, pop, folk, classical...

I used to have people round on my birthday and play music on the music centre out of the window or on the computer, pretty non-stop - until 3 years ago. Then I had a sudden worsening, which seems to be increasing (although I'm not sure) and I can't even rememember how to do a lot of things. I'm forgetting people's names too - like neighbours.

I do hope my ability to enjoy music comes back more often...
MeSci you have reminded me of a time when I took some tentative steps into playing my keyboard and singing. That was something I used to do before sickness in public, in private, and with confidence because -- a little bragging here:) -- my voice was strong and powerful and usually right on. What came out of my mouth the first few times I tried to get back into this I was horrified. I apparently had no idea how to hit a note, sounded tone deaf, had no kind of vocal control at all. Squeaked, cracked ... if I hadn't had my years-earlier experience and if I hadn't already learned how really god-awful almost everything is when I begin it since I got sick, I would have given it up completely.

But since I did know these things, I put aside my self-consciousness and kept going. Eventually it began to sound like a real voice again. Not that first day it didn't! But in time:)

I hope you are able to reclaim this part of your life again.
 
I've always preferred to listen to talkback radio. Music stirs up too much emotion in me and so I don't have my radio set to a music station playing their choice of music. I do enjoy listening to music but it has to be my choice of music.

With ME I cant bear loud music, it's makes me sick very quickly.
 
Yeah @rosie26 talk radio is a good bet for those who are not able to do much. With music there is such a wide range of sound frequencies it can be very disturbing. Not so bad with the human speaking voice.
 
Sounds horrible BeADocToGoTo1. I sympathize. I also went through what felt a very long time where language and processing problems of all kinds cropped up. What a nightmare. I hope things have continued to improve.
Thank you Jody! Things are much better now, and I hope with you as well. It took years of researching, experimenting and digging in, but discovering why I was nutrient deficient, addressing root causes as well as those nutrient deficiencies helped my metabolic pathways and mitochondria to start functioning better again. These days I can listen to music every day, thankfully. My hope is that there are others who can benefit from what I had learnt and are able to get some of the music enjoyment back into their lives.
 
I am very grateful not to have any negative effects with music. Well, with the music I love best anyway.
The only music that brings me any comfort, joy, sometimes sweet tears, peacefulness or help at all is my favourite classical, and my taste is for mainly gentle music.

But as time goes by there are some composers I used to like and can no longer stand! I can no longer tolerate tenors or sopranos singing opera! It is the most awful din to me now, and unbearable.

I can tolerate very few singing voices any more unless they have a spot-on pitch and a pure light sound.
So I like orchestral, or piano music more nowadays and for some strange reason have developed a fondness for the Oboe.

I used to quite like some Rock music. But the energy of that is way too much for me nowadays.
Other "pop" songs....well rarely now, but now and again I hear one I like. But rarely listen to that channel on radio now.

Music doesn't drain me when I listen to what I most like. Or give me pem. I find it uplifting and it is soothing and a comfort to me.
But one most horrible thing can happen sometimes, when I can't "find my Soul" in it, and the music is just a series of pleasant sounds. But that often passes off in a few days. I hate it when it happens, and it seems to be related to extreme exhaustion during a relapse.
Wolfcub,

I get it about the oboe. It has a uniquely sweet and clear sound that brings tears to my eyes. It sounds like you are able to lay hold of quiet gentle music, which is no small deal. Lots of beautiful music of this type.

Exhaustion seems to change everything doesn't it.
 
When I became ill I had to change the kind of music I listen to. Before that I mostly listened to classical and classic rock. After I got sick I could not listen classical from before the romantic era. And instead of rock I started listening to new age music.
Andrew,

Thank goodness there are types of music that work for you. We sure have to be flexible with this illness.
 
I've always preferred to listen to talkback radio. Music stirs up too much emotion in me and so I don't have my radio set to a music station playing their choice of music. I do enjoy listening to music but it has to be my choice of music.

With ME I cant bear loud music, it's makes me sick very quickly.
Interesting Rosie26. Talk radio just destroys me. I was going to a chiropractor's office some years ago and the waiting room was blasting talk radio. There was no way to get away from it. I had to fill out forms sitting there in that room with my head imploding. I'm glad you can handle that stuff. And I am impressed, it is so far beyond me.:)
 
I have a yearning desire to compose music digitally. I constantly get music "in my head" and because I can't sing any more I whistle it and can imagine the orchestration. I do enjoy that and it does actually help bring some better energy into me.
My only problem is I would need a whole new laptop (money!) with LOTS of gigabytes RAM. Then I would need a DAWS (digital audio workstation)which also means money, as the cheap ones have a really synthetic sound. I'd want top of the range.
So that's not possible yet....:(