‘FIBROMYALGIA PAIN FEELS LIKE:’ for Fibromyalgia and ME/CFS Awareness Day – May 12 2023


For Fibromyalgia and ME/CFS Awareness Day 2023

© 2022 By Shiloh Moore

May 12 is Fibromyalgia and ME/CFS Awareness Day. I prepared this artwork for Severe ME Awareness Day Aug 8 last year, but was not well enough to post it online. I have had Severe Fibromyalgia and ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) for 33 years since I was 10 years old.

As a child and teenager I woke up screaming from nightmares of the following imagery and the pain was real. I no longer have these visual dreams, but I still wake crying out every night and the pain remains this extreme constantly. I have not experienced anything less than 7/10 pain since I was 13 years old. In truth I’ve experienced more like 100/10 multiple times.

Image descriptions:

‘Fibromyalgia Pain Feels Like:’

Poisonous Snakes, squeezing, suffocating, biting all over

Poisonous Spiders, all over, biting, crawling

Thousands of Pins and Needles

Treading Water, drowning, exhausted

Burning alive

Silently Screaming, nobody hearing


© 2022 By Shiloh Moore

My pain is not visible. Since childhood I have learned to block out the pain. For four years as a child Fibromyalgia was undiagnosed and doctors said everyone had growing pains, so I thought I was naughty for complaining. I learned not to complain, and blocked the pain out. I would live ‘out of body,’ in my mind, and go to a place, deep within where I am loved and I am safe.

I now treat the pain as a companion and no longer fear it. I have learned to block out the pain, or to be with the pain, meditate, and know I am safe in my beautiful body. For several hours every day I need ‘wholehearted rest’ – rest with no sensory stimulus. I chant comforting lyrics with simple melodies silently in my head, to slow… down… my… mind… to… ease… the… pain…

‘Spacious Peace’ is one example of a chant I meditate on to ease the pain. This video on YouTube is a recording from the one and only time I sat up at the piano and played it out loud in full. https://youtu.be/1WGtuV_MRAQ

Spacious Peace

© 2022 by Shiloh Moore

You are loved

You are safe

You may live your life with ease

Live in the moment

Take a breath

This won’t be forever

You may rest

Spacious, peaceful peace

Infinite blissful bliss

Serenity, Serenity


Let Go

Go With The Flow

For more art by Shiloh Moore see See ME Expo Shiloh Moore Art and Words www.seemeexpo.com/shiloh-moore and Shiloh’s website www.byshi.hogfish.net including ME/CFS advocacy http://byshi.hogfish.net/mecfs-advocacy/ @ByShi.Art on Facebook & Instagram

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