Please share your Fibromyalgia story so that we can raise awareness to find a cure for Fibromyalgia for everyone. Only your first name and your town or city will be used so that your full identity can be protected.
Here you can share your experience of Fibromyalgia. What triggered it for you? What are your symptoms? How was your experience of health care professionals? Were they helpful? Were they ignorant? Did they care about you or were they dismissive?
How have spouses, family and friends reacted to your health issues. Have they been helpful, supportive and understanding? Or just the opposite?
What are your experiences of medications? Do they relieve pain? Do they help you sleep? What side effects have you experienced?
What have you found helpful for pain? What have you found helpful for sleep? What have you found helpful for depression? What have you found helpful for anxiety? What have you found helpful for all your other symptoms?
What supplements do you take? What alternative treatments have you tried?
How has your life changed? What have you had to give up? What is your social life like now?
Have you had to give up work? Have you had to reduce your working hours?
I had an abusive up-bringing and had to put into care. Despite this I met and married a great man and got a job as a teaching assistant and had lots of friends. Life seemed good. But after the birth of my second child everything started to go wrong. The birth was very traumatic and only after 37 hours of labour did they decide to give me an emergency caesarean. I never really recovered from that.
Over the next 3 years I went from being a busy mum, always on the go to someone I don’t even recognise. I am in agony most days and cannot sleep at night because of the pain. I am exhausted all the time and struggle to keep up with my girls. I had to stop work. I’ve put on a lot of weight and I hate myself. My hubby tries to understand but gets frustrated when he comes home to a messy house. He thinks because I am at home all day I should do all the housework. I don’t go out much and lots of my friends stopped inviting me to parties and meals out. I wish there was a cure for fibromyalgia. I wish I was a better mum and wife.
Leanne from Coventry UK
Hi, my name is Tara.
Today, I’m ready to share my story with you. I hope you can spare the time to read this.
For my final therapy session, my therapist set me a task. I was asked, "If you could speak to every single one of the health professionals who have mistreated you over the years, what would you say?"
So I wrote a letter, addressing them all as one, I want them to hear my story and the part each one of them had to play in it. As well as battling for a diagnosis for my pain symptoms, I have also been fighting for an autism diagnosis for my entire life.
This morning, I read out my letter during my final appointment. It was a very emotional moment for me and I found the experience very moving. It felt as though a huge weight had been lifted off my shoulders. I want to share this with you all today.
Dear Health Professional,
"If I could see you again, I would tell you this…”
I told you.
I told you I was in pain.
I told you I was hurting…
…both physically and mentally.
I told you.
You rushed me.
You ignored me.
You laughed at me.
You didn’t listen.
You don’t hear me.
You never hear me.
The trauma you caused me when I was younger affected me so much that I was too terrified to turn to you again. They also didn't understand that I was in constant pain and that the noise and bright lights made things so much worse.
When I was older, I had no choice but to visit you again. I couldn’t cope with the transition from school to college. I had noticed changes in my pain symptoms. You told me it was just “teenage stress” and convinced me to take anti-depressants.
When I had a bad reaction to the medication, you told me I was having a breakdown and sent me to see a mental health team.
I struggled on for a few more years until my pain and other symptoms became even more intense. “It’s just IBS and anxiety” you said but you refused to give me a diagnosis for either condition. You told me you’d “lost” all of my previous notes.
You made me have many physical examinations, most of which were humiliating and you treated me with little respect. You told me it was all in my head. You told me I needed to go to a psychiatrist to work out why I was so desperate to be diagnosed with an illness or condition. Again, you convinced me I needed medication for my “moods”. And again, I had a bad reaction to the tablets but you still kept telling me I needed them. The medication made my behaviour more difficult and you blamed me for it. You told me I needed help for my “complex mental health issues”. You made me question my sanity. You made me question who I am. You destroyed my self-worth.
Then one day, I broke away from you. And when I broke away from you, the others could listen. For the first time, I was heard. They could hear me and they could see the things you ignored. I started Interpersonal Therapy and I found specialists who listened.
Slowly, the new specialists have been piecing all of my symptoms together. They finally came to the conclusion that everything is sensory related. My body and my brain can perceive many things as painful; food, drink, light, sound, taste, touch, temperature, etc. Environmental changes that most people would never even notice could make me seriously ill.
Last week, I received a call from a new doctor. She said “We’ve looked at your notes and we’ve finally diagnosed your pain symptoms as a whole. You have fibromyalgia. Fibromyalgia is a condition which causes long-term wide spread pain throughout the body. It causes abnormal pain perception processing and sensitivities”. The doctor told me that there is a link between all of my symptoms as new research has found there to be a strong genetic link between having both fibromyalgia and autism together.
This story does not have a happy ending, I’m still a long way from receiving a full diagnosis for all of my symptoms and traits. I have missed out on many opportunities due to my conditions, I have lost many friends and had several relationship breakdowns.
You put me on so many medications, most of them completely unnecessary. They took away my amazing memory, my ability to remember every small detail. You tried to make me conform to your version of “normal”. You tried to condition all of my traits out of me. All of the things that made me, me. You tried to replace them with traits and behaviours that I did not recognise. For a long time, I did not recognise myself.
But I want you to know this - you have not defeated me. I will continue to do my own research. It’s helped me get where I am today. I will continue a career in the health care sector, providing advice and support to people like me. I will have a LIFE. I will keep on LIVING. I will keep on FIGHTING. For myself and every other patient. You’ve made me even more determined to help people and to be successful at it.
I’m going to use my traumatic experience as motivation. I will raise awareness of misunderstood conditions. Who knows, maybe one day I’ll even write a book and then maybe, just maybe, you’ll read it. Maybe the words will tear your heart into pieces. Maybe, just for a split second, you’ll experience my years of pain with me, all at once. Maybe then, only then, you’ll finally understand. A tear will roll down your cheek, dear health professional, for you will hear me. You’ll finally hear ME.
Yours sincerely,
Tara
(Professional Patient)