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
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
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
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 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
Hello Fibro Blog 
You are a hero…. and I applaud you strength. Thank you for sharing.
LikeLiked by 1 person
💜 we are in it together 💜
LikeLike
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
LikeLiked by 1 person
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.
LikeLike