Fibromyalgia and sensory overload to sounds.



"Are you not listening to me?" This is a question I am often asked and I always feel a massive sense of guilt at times due to sensory overload as it is such a difficult symptom to explain well. It is hard enough getting people to accept the pain and chronic fatigue associated with fibromyalgia so other symptoms become even harder. 

Often there is too much going on for my brain to cope with and it shuts down and becomes slow and fuzzy, this is called sensory overload. 

It makes me feel overwhelmed like I am a spectator watching but not being able to focus on what is going on. During this time I feel panicky and a bit tearful, like I just want it to stop, but how do you stop normal life? 

I know I am not the only person with fibromyalgia to feel this way, I was so relieved when I discovered others suffer from this. That always sounds terrible to say but it really is a comfort knowing you are not alone with an experience like this. 

My first realisation that I was experiencing sensory overload was very early on after diagnosis. I was still trying to manage a "normal life" at this stage but often the television seemed so excessively loud and confusing if there was another noise also such as a clock ticking. I would ask the children to turn it down as I could not focus on words while the TV was on, it was like they were speaking but I could not grasp the conversation at all.

Another sign was public transport became hell. 

There were way too many noises all happening at once and it would scare me. 

  • Clusters of people having different conversations. 
  • Bass sound from people with poor quality headphones. 
  • Children screeching.
  • Babies crying.
  • The engine sounds.
  • The doors opening and closing. 
  • People pressing the bell. 
  • People talking into mobile phones. 

Within my mind, the sound technician has time off without warning. Prior to leaving their duty, they allow a small child to play on the sound desk, they twist every knob, move every dial and change every setting so I hear every noise at the same intensity in one massive blow.



In a "normal" person the brain blocks out most of the noise and you just focus on one, maybe two but in someone with sensory overload our brains can't handle it all.



I literally feel shut down, it starts to crash just like a computer. I become slow, quiet and start to try and ignore everything. 

Sometimes I cope, but if I am in pain or tired I struggle. My brain loses the ability to filter out and selectively attend to what’s important in the constant stream of incoming sensory information. 


If you imagine a brain as a Rubix cube when it is new, all the colours on their correct sides. The noise changes this calm, it is almost like crazed monster turns the cube with each sound until it becomes a mess. I have now lost the ability for my brain to filter out what it needs, what we need to focus on and what we need to block out. 

We can not help this happening. 
We can not predict when so we try to avoid situations where it happened before for fear of feeling that sadness, overwhelming feelings, feeling disembodied. 

So to answer the initial question, "Are you not listening to me?"
Often no, I am not, please do not take it personally. 
Many people with fibromyalgia experience over-stimulation (sensory overload) from the environment. People who experience this kind of sensory overload may find normal everyday levels of some stimuli uncomfortable, distressing and this may lead to fear and anxiety. 

Today I felt overwhelmed,  so much was happening this afternoon, it is now ten o'clock in the evening and I am still feeling emotional, drained and overwhelmed from this experience. Tears have welled in my eyes typing this yet it has been soothing to write. A few paragraphs of emotions would have once taken me minutes to type now it becomes hours. My brain is slow yet this has been very cathartic to do so thank you for taking the time to read my words. 

I can now share this with my sons, my Mum and say, this is why I am the way I am. Words do not flow so easy as getting people to sit for hours while condensing  my emotions never works well. 

If you are a fibromyalgia person and read this thinking, "that is me also" then huge hugs. 

If you have a loved one with fibromyalgia then I hope me sharing my emotions will help you to understand, we try our best. 

 Love and gentle hugs to you all

Ness

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Comments

  1. This is an AMAZINGLY ACCURATE description of what I go through on a daily basis! I too have CFS (27 years now) and I don't think I've ever seen the experience of it articulated so well. I liked this especially: "like I am a spectator watching but not being able to focus on what is going on."

    Thanks for writing this post!

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    1. Marlies, so sorry you can relate to this and we have the same illness, huge hugs. Thank you so much for taking the time to write this comment, it means so much. Have a wonderful day Love Ness xxx

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  2. Both my daughter and I get like this. I dropped Missy off at school this morning to go away for a few days with them. (Yes, I'm worried sick!) But what I noticed sitting in her classroom was just how overwhelming the environment was. Not just noise but also all the loud,bright colours everywhere and work on every available wall space. It was beyond cluttered. I'm sure it looked pretty to others but not to me. I now realise just why Missy has to come home early so often with the fibro migraines. I really don't know how she does it as often as she does. No wonder she wants to be home schooled. If I was well enough then maybe that would be the answer. I really wish schools were more aware of this though. Kids on the autism spectrum have the same problems so I'm sure it would be a course worth having for teachers.
    I hope you've recovered from the overwhelm now Sweet. I'm about to veg on the sofa to try and stop it so I'm in good company. Good thing there's no one to talk to now as my speech goes all funny when it happens and I'm sure people think I'm drunk!

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  3. Thankyou so much for this - I'm so glad I'm not alone!

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  4. Spot on!
    I often have a panic attack at the grocery store and I do believe it's from the sensory overload on top of the pain. All the lights, sounds, moving people - it's too much for a brain to process when it's already trying to process through the pain. So glad you wrote about this!

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  5. God bless you for this article! For the longest time I thought I was crazy! You communicate what I experience very succinctly. Thank you for putting words to it!

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  6. My mother have been suffering from fibromyalgia disease for the last 3 years and had constant pain, especially in her neck,During the first year,she had faith in God that she will be healed someday by the Almighty. This disease started circulate all over my moms body and she have been taking treatment from her doctor, few weeks ago i came on search on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from (fibromyalgia) by this man DR Abumere and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to DR Abumere telling him about my mothers fibromyalgia disease he told me not to worry that my mom is gonna be okay with his herbal remedies!! actually i never believed it,, well after all the procedures and remedy given to me by this man i went to discuss it with my mom and explain everything to her on what she is about to take in,because Dr Abumere told me my mother must stop other medication just to make sure his own work properly,she agreed because this great doctor gave me assurance about his good work.
    Weeks later after my mother start using this herbal medicine she started experiencing changes all over her as the DR assured me that she will cured,after some time i went to her doctor to confirmed if she has finally healed behold it was TRUE, So dear viewers my advise is if you have such sickness or any other at all you can email DR Abumere on: abumereherbalcentre@gmail.com or visit his website: www.abumereherbalcentre.simplesite.com

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  7. I've had Fibro for over 25 years and didn't know about sensory overload until a couple of months ago - it was such a huge relief to know this condition existed, I thought I was going crazy and cried with relief when I read about it on Pinterest (The Fibro font of all knowledge!)
    Thanks for posting about Fibro for me and all the other spoonies out there
    Braer Rabbit (Pinterest)

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  8. Everything you said, plus more! When I am in a flare or my CNS is in a tizzy, sound and sensory overload are literally painful.

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  9. I am a huge music lover and was never without it. My first adult purchase was a stereo, I have a large music collection, I love. I have not even hooked up a stereo in my new home of 2 years. I moved from the city I loved, to a very small village to get away from noise and scents. This was one of the clues that led me to understand, Fibro was what was going on, that so betrayed me. Now my music is bird song, (it can be too much, sometimes). Fibro is almost too much to bear, especially when everyone around thinks you have gone crazy, including yourself. It is so very lonely.

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  10. Thank you for writing this post (and to Anne for sharing it on Facebook). It wasn't until I read this that I realised what happens in my head, sometimes. Luckily, my symptoms seem to be far milder than yours but I can definitely empathise with you.

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  11. Hi , I enjoyed your article. I too have Fibro and believe it or not drive buses for living!!
    The last few weeks i've been in a bad flare and the resulting noises from my bus such as the ones you mentioned but also the doors and window rattles and squeeks from window seals have been driving me demented .Sometimes instead of my brain shutting down to lessen the noise I focus on one aspect of it and it drives me daft lol. So I feel your bus journey pain :)

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  12. I find myself asking family memebers why they are yelling. Thanks for your blog.

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