For many years I was told that my pain & exhaustion was all in my head, that I was depressed but eventually I was diagnosed with fibromyalgia but wasn't told anything about it just handed a piece of paper with the word fibromyalgia written on it & told to go & find out about it. It was so frustrating as I didn't have a computer so went to the library & took out lots of books to try to find out more about why I was feeling like this. In doing so many years later I have managed to diagnose & help lots of friends with the same condition when their doctors didn't know what was wrong, told them to go back & get them to test their pressure points & sure enough I was right. It is now such a common condition & a terrible one to live with for the sufferer themselves & their families & it's so frustrating that they don't seem to have consultants who deal specifically with this, nobody seems to know if it rheumatological or neurological & once you're diagnosed God help you if you ever have anything else wrong with you as they now just put it down to your fibromyalgia & tell you that you have to put up with it. I've recently had this problem with my GP who I have now changed & am reported to NHS England for negligence as I was positive there was something neurologically wrong with me but for 12 months they refused to refer me despite asking several times. Eventually I had to pay to go privately & sure enough I was right because nobody knows their own body like themselves so you know when something is wrong & is not fybro related. I have been diagnosed with Functional Neurological Disorder which is a problem with your central nervous system whereby it doesn't transmit messages to & from the brain causing pain numbness, loss of feeling, swallowing & digestive problems among many other things. Sadly it's like fibro, they don't know what causes it so can't cure it, just treat the symptoms which my GP never does as they just keep telling me there are medically unexplained illnesses. I've been treating myself homeopathically for my digestive issues which have been terrible but I'm gradually getting there although it will probably take a few more months to clear completely on the Candida Diet which is tortuous but as about 80% of your immune system is in your gut hopefully healing myself from the inside out will help my fibromyalgia & FND.
Here is a poem I wrote about how I felt about the way I was treated before being diagnosed with fibro.
The Invisible Disease
Why will no-one believe me when I say my muscles ache
With a pain so intense but they think I’m a fake
They tell me I’m stressed and suffering from depression
But I’m not crazy, this is not an obsession
Your pain isn’t real they told me for years
Your pain isn’t real so hold back your tears
It’s all in your head, your pain isn’t real
But they don’t understand this hurt that I feel
The pain and exhaustion just wears me out
All I want to do is to scream and shout
But they still won’t believe me that all this is real
I just wish for one day they could feel how I feel
Your pain isn’t real they told me for years
Your pain isn’t real so hold back your tears
It’s all in your head, your pain isn’t real
But they don’t understand this hurt that I feel
Then one day they came up with a name for this invisible disease
They call it Fibromyalgia, finally someone heard my pleas
Giving it a name won’t take away this pain so intense
But at least now my suffering all makes sense
Your pain isn’t real they told me for years
Your pain isn’t real so hold back your tears
It’s all in your head, your pain isn’t real
Maybe now they’ll understand this hurt that I feel
Copyright Liz Denial 15th March 2018