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?

violinist-400x262.jpg
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

1gooddog i just stopped watching tv the last few years. Problem solved :)
Basically, so have i. Except for occasionally Jeopardy. I do watch Amazon Prime for company. But i am picky. Have watched the Durrells in Corfu series 3 times now.

Also, I neglected to mention that when the ringing and whooshing in my ears requires deadening, I need other noise.
 
For me,there there are times I need quiet. It also strongly deepends on the music. I cannot tolerate frantic noise. I cannot tolerate loud commercials on tv. Why are they yelling at me. Commercials easy to mute. I can feel drums. My ears rebel to many sounds. The pitch and frantic whinig of certain vehicles. The neighbor's screaming vacuum. Yes it is exhausting physically. I tend to listen to gentle music, but today is turning out to be a no noise day. I can hear and feel the dryer from my bed. The Windows are open so I can hear a few birds. Sometimes I feel like someone is playing a kettle drum on my ear drum.
When I make these statements to others, they don't get it. The understanding of this forum is "music to my ears".
lol Being understood on the forum is definitely music to our ears.:) Thanks for talking about your experience 1gooddog.
 
Great post! It's not just me. on good days I can drive and listen to music and enjoy it. Many days driving without music, can't handle it. And ya talk radio is hard to listen to now too. Something about noise sensitivity.
 
For me music is not exhausting, or it depends on the mood. But generally I like to listen some relaxing music like this one from Michel Pépé..


But I many times have good days when even some dance music goes. But I agree that it's hard to listen to anything when trying to read or do something serious that requires concentration.
 
Great post! It's not just me. on good days I can drive and listen to music and enjoy it. Many days driving without music, can't handle it. And ya talk radio is hard to listen to now too. Something about noise sensitivity.
EnlightenME, it isn't just you:) This appears to be a more widespread problem than I realized. Noise sensitivity can be so restricting.
 
For me music is not exhausting, or it depends on the mood. But generally I like to listen some relaxing music like this one from Michel Pépé..


But I many times have good days when even some dance music goes. But I agree that it's hard to listen to anything when trying to read or do something serious that requires concentration.
Tuukka,

Multi-tasking is really not in the equation where music is concerned. Listening to music can become so tricky.
 
Music and dancing were very important to me, I could say, almost central. But I had to stop over twenty years ago when I got this illness. I believed the reason was because I « lost my fight or flight » capacity, but maybe there are more reasons for it on top of that one. I can relate to what everyone wrote who shares this loss.

It drains my energy supply so quickly. For a long time I could only listen for 1 or 2 minutes of music before going into exhaustion. This would not last the rest of the day at the 1 or 2 minute level but a couple of hours if I also let myself dance to it. If I went much longer, these effects would wipe me out the rest of the day, and to go to a concert meant the next day too.

Vacuuming is a similar stress. Also listening to other languages, particularly those with high intensity sound, and voices with high pitches and modulation such as women, and sometimes children. Low pitched,, slower speed sounds at low volume and low modulations definitely work better, but I am always strictly « on the clock » when it comes to « noise.: I really regret even referring to such sound as « noise », but the nervous system regards it as such.

On this forum, I read about a much better quality ear plug designed originally for musicians. They are called Ear Peace and have definitely been more helpful and comfortable for me. It is possible to hear speech and function with them in, so they have a greater range for my needs.

Could go on and on!

I also had to learn as quickly as I could to drop most of my sad reactions to the loss I felt, because I also did not have the energy for those either. I do the best I can.

As with so many other losses we share, the lack of understanding from others is another hardship. Thanks Jody and everyone for airing this loss so many here have. I can feel your caring and support!
 
Music and dancing were very important to me, I could say, almost central. But I had to stop over twenty years ago when I got this illness. I believed the reason was because I « lost my fight or flight » capacity, but maybe there are more reasons for it on top of that one. I can relate to what everyone wrote who shares this loss.

It drains my energy supply so quickly. For a long time I could only listen for 1 or 2 minutes of music before going into exhaustion. This would not last the rest of the day at the 1 or 2 minute level but a couple of hours if I also let myself dance to it. If I went much longer, these effects would wipe me out the rest of the day, and to go to a concert meant the next day too.

Vacuuming is a similar stress. Also listening to other languages, particularly those with high intensity sound, and voices with high pitches and modulation such as women, and sometimes children. Low pitched,, slower speed sounds at low volume and low modulations definitely work better, but I am always strictly « on the clock » when it comes to « noise.: I really regret even referring to such sound as « noise », but the nervous system regards it as such.

On this forum, I read about a much better quality ear plug designed originally for musicians. They are called Ear Peace and have definitely been more helpful and comfortable for me. It is possible to hear speech and function with them in, so they have a greater range for my needs.

Could go on and on!

I also had to learn as quickly as I could to drop most of my sad reactions to the loss I felt, because I also did not have the energy for those either. I do the best I can.

As with so many other losses we share, the lack of understanding from others is another hardship. Thanks Jody and everyone for airing this loss so many here have. I can feel your caring and support!
Thank you Sing for sharing your thoughts and your experiences with the loss of music. And the similarities to what happens when you vacuum:) Strange isn't it the seemingly unconnected things that will knock us over.
 
Yes Jody; the nervous and endocrine systems dont assess challenges the same way that we do as human beings. That’s also why the “Get happy and do what what you love” advice/prescription does not work for these particular problems. We dont want to be limited or physically stopped from doing what has meant the most to us.

Thank you as always for your kindness and truthful understanding as we walk together.
 
Yes Jody; the nervous and endocrine systems dont assess challenges the same way that we do as human beings. That’s also why the “Get happy and do what what you love” advice/prescription does not work for these particular problems. We dont want to be limited or physically stopped from doing what has meant the most to us.

Thank you as always for your kindness and truthful understanding as we walk together.
Yep, as we all learn the hard way -- even good stressors are still stressors.
 
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.
Jody I so relate to your 2 posts on not being able to learn new things - and this posting on music. I too had a transistor radio up to my head, on all the time as a teenager. I sang along in the car with Motown, rock, etc.
Now I never listen to music - and I have to have Radio/CD off in car while driving - too distracting.
I loved listening to opera and classical - not anymore - takes too much concentration.
But once in awhile my friends post a great "oldie" online - and I get so uplifted listening, brings back so much happier times growing up - going to live concerts, going to dances. Thanks for your post Starlily88
 
Sorry to read some of you have problems listening to music. For me it's the opposite. Music saved, and continues to save, my life. It is what keeps me going. For some people, it's family, or pets, or work. For me, it's music.
 
Sorry to read some of you have problems listening to music. For me it's the opposite. Music saved, and continues to save, my life. It is what keeps me going. For some people, it's family, or pets, or work. For me, it's music.
When I don't have thyroid issues - I do put on a CD - and sometimes I start dancing in the living room.
Music is indeed uplifting for the soul, and mercy me, we all need uplifting!!
Starlily88
 
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?

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
Some days I can't stand to listen to music, others I love to listen but have to keep to the soothing kind. I love jazz but it has to be pretty cool. I had a good day a few years ago and decided I was well enough to go to a jazz concert. I really enjoyed it but, meeting the musicians afterwards, I found I was shaking and couldn't stand. That was my last attempt. I keep it to radio, cds and home listening now. I love classical and world music, too.
 
What I can do with music has changed.
No more cranking up Rush, for example.
:(

Almost all of the music on the radio stations is now too full of too many different sounds happening too quickly.
Even classical music.

Now, YouTube is my 'radio'
I decided to pay for expanded internet bandwidth so more frequent and longer use would be an option.

Have found things like this on YouTube;

Relaxing Music: work, focus, light, spa music - 9 hours mix
relaxdaily

Published on Oct 3, 2013

A long, light and relaxing music mix: Background music for work, to focus, study, concentrate, be creative, for use as spa music or simply for pure enjoyment. Original music I composed and created for the YouTube community and beyond. This music mix video represents most of the music I created during the first two years of my relaxdaily project. It might be especially useful for you if you like to hit one button in the morning and have music playing for almost the whole day. May the music be a positive energy in your life, Michael (relaxdaily)
And in a separate issue, there are times I have had that or similar running a couple days straight to help me focus on other things besides the tinnitus.

There are days where I've shut down the air conditioner or furnace or a fan for a while because "Okay, that's enough sound for now, thank you."

As you might have deduced from my profile picture, avatar, whatever it is called, I am in to model trains: model trains have sound effects available, some of very high quality these days, & I do not use any of them at home, too much noise/sound.
 
I believe it's been shown on MRIs, etc that engaging with music uses certain unique pathways of the brain. I imagine the brain like the CPU of a computer. In that analogy, the musical part of the brain would be like a specialized component (e.g. the GPU or graphics card in a computer.) Some very musical people have that part of their brain exceptionally-well developed so they can quickly and easily process complex musical information, just like a gaming computer can quickly and easily process graphical information.

As people with CFS, our brains are probably subconsciously going into power-save mode and shutting down everything we can get away with. So while your prefrontal cortex might operating at 40% capacity, you can't totally shut it down or else you won't be able to plan or make decisions. But you probably can mostly shut down the musical part of your brain, just as a computer will shut down the GPU whenever it's not in use to save energy. And you could imagine that booting this part of your brain all the way from zero would require a much larger expenditure of energy than ramping up for some other tasks - especially if that part of your brain was particularly powerful, as might be expected if you were musically inclined before you got sick.

That's just how I like to think of it.