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Doubt, disbelief, and myths around fibromyalgia.
And yes, it is a "thing".
Welcome to my world.
A world that has spun around pain for many years.
Not my pain, no, I have wished many times I could take it on me, no, the pain of my daughter. My youngest child was four years old when out of the blue, one sunny morning, she asked me to vacuum the floor. There were all nails, she said, that hurt her feet when getting up.
At first I thought she had had a bad dream. But I would quickly change my mind.
Mummy, mummy I can't go out of bed, there are all nails on the floor, can you get the vacuum please?
The carpet was clean, soft, and yet, as soon as she stood up her eyes got overflown with tears, big tears of pain. She wasn't making any noise, just silently crying.
The pain seemed unbearable, and I put her back to bed. It took a couple of hours to soothe, and I felt completely powerless, sad, and worried.
Pain.
The pain disappeared in the following days, and life got back to normal, but I couldn't get her tears out of my head.
A few weeks later it happened again. Not only she felt like nails under her feet, she also described them as hot, burning, and she felt the burning sensation rising to her hips along the bones of her legs.
I decided to ring our GP, made an appointment and took my baby girl to the practice. I had to carry her, because she couldn't wear any shoes: the pain and the heat were unbearable.
Our Doctor was a very nice giant, Antillean from origin, he had a very soft accent and spoke with a deep, calm voice. He visited my daughter, asked her questions, to describe the pain and at the end he nodded his head, honestly not knowing how to help.
He prescribed an ointment to soothe the pain and to cool the hot feeling, but had no idea what to do for the "nails". He would research it, he said, but he was overbooked for weeks, and I knew he only got me an appointment because he knew I'd never go to him for anything minor: as a preschool teacher I was trained to identify and assess the severity of a symptom. Nothing, however, I had found in my memory, nor in my books, that could even close look like what my child was experiencing.
It was heartbreaking. Little I knew it would take nearly two decades to give all that pain a name.
Fibromyalgia
It was only over 19 years later, after having excluded other autoimmune diseases like MS, Lupus, Rheumatoid Arthritis, and many more of those nasty stuff, that finally a Doctor pronounced the word "Fibromyalgia".
19 years during which many things were said, like "she doesn't want to go to school", "she has a psychosomatic condition", "it's between her ears", "she's lazy"... All these labels were promptly dismissed, because I knew she was in real pain, not faking anything, even if sometimes it felt only like a bad dream. However, I know those allegations hurt her deeply, and I learned to make her change perspective, turning and twisting the words. Sometimes even lying about what another doctor had said, to avoid her the suffering of not being believed.
The journey has been long, painful, stressful, heartbreaking, sad, angry, hopeless, helpless, faithful, incredible, disappointing, exciting, and so much more!, and I may write something more about it, someday, in the future, yet today I want to recall the moment we finally knew what kind of beast we were fighting.
We finally could address it the right way, starting a fibro-friendly, symptom free life.
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