Fibromyalgia Poems

Fibromyalgia: My Story

As May is Fibromyalgia Awareness Month and 12th May is Fibromyalgia Awareness Day, I decided to give an update of my fibromyalgia story so far:

It started with knee pain

When I was thirteen

The doctors thought I was faking

Oh how wrong they were

Every year I went

Every year they gave an excuse

It’s growing pains, it will go away

It’s all in your head

But the pain never left me

Instead it grew and spread

In my lower back

Then my shoulders

My hands and wrists

Thighs, hips, ankles, feet

Every part of my body

Could hurt without doing anything

Smiling through the pain

The pain came and went

And varied day to day

One day I finally had an MRI

But nothing showed

Dozens of blood tests

Always came back clear

I started to believe

Maybe it is all in my head

But no, I was right to pester

I know myself something is wrong

Still the same answers

Just a never ending cycle

Until one day I witnessed trauma

And the pain never left again

I thought I was suffering before

Now I long to go back

Even on a good day only the comfiest clothes will do

I get flu like symptoms too

Fatigue, headaches, IBS

Just to name a few

Finally a doctor listened

They referred me to a specialist

Within 5 minutes I had my diagnosis

“You have fibromyalgia”

For years I had waited for a name

To know I was right all along

I thought I would be relieved

But instead I was sad

I was left with a leaflet

And told it would go away by itself

I already knew that wasn’t true

I had done my research before

Yes I’m even in pain here…

Having searched for a diagnosis that fit

I knew it wouldn’t just go away

There is no cure

Or even a treatment that works for all

And so I find my own way

To live life to the full

I’ve learnt to pace in everything I do

But it can be hard when you’re limit changes daily

One day I can feel relatively okay

Then the next I can barely move, barely think

I get new symptoms all the time

And they never go away

I have to live with my limitations

Prioritising my own health

If I don’t I get into the harsh cycle

Of endless flare up when I refuse to stop

I try to get out and have a good time whenever possible

I just want to be my old self again

But I’m learning I have to say no

When I want to say yes and do everything at once

I have to be careful

Even one small thing can throw my body out

A simple task can put me in bed for days

Leave me wounded and limping

Unable to form sentences as the pain blurs my mind

These are the realities of living with fibromyalgia

I am grateful for every moment

I’ve learnt to focus on the smallest of positives

And that means I can still be happy

I don’t want sympathy

I want awareness

When chronic illness tries to steal your life away

You can’t fight it, you have to work around it

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4 thoughts on “Fibromyalgia: My Story”

  1. Hi Bethan your story is so similar to mine. I had all the same problems with the medical professionals until I met a locum GP who was genuinely interested in helping me. She was and still is very supportive. I also found a private practitioner who has also made a big difference for me.

    In the end I had to retire from academia as the cognitive impairment and lack of sleep was too debilitating.

    I wish you all the best
    Regards Steve

    Liked by 1 person

    1. Hi Stephen. I am so glad you found doctors who are caring. I think that is a big part of the problem in getting diagnosed in the first place and in getting treatment that might help.
      The brain fog is horrific isn’t it. I struggle for words and to remember things daily but luckily my managers fill in the blanks when I’m not making sense and help out.


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