Hello all, just to introduce myself and tell you my story.
My name is Ray, I live in Belfast.
I have suffered with fibromyalgia for about 10 years now.
About 16 years ago I had to give up work to move back home as my father could no longer manage mum who had Alzheimer's, mum no longer recognised dad as her husband and he could not understand. He was profoundly deaf and that really complicated things.
Anyways, after about 6 years of sleeping with one eye open in the next room to mum (dad hidden at the top of the house so mum didn't go off on one)
I developed excruciating pain in my left arm, through the shoulder from the neck down,, it just felt like something needed pulled in my neck.
I went to a Chiropractor and yes it helped but after spending over two thousand pounds I could no longer afford his treatment.
Eventually I went to the Dr about 4 years after things started ,,the drugs began, paracetamol, Ibuoprofen, diclofenic but no one mentioned what it could be not even the chiropractor had mentioned fibromyalgia. It was not until I went along one day and got a nice young locum, it was the first anyone had mentioned the possibility of fibromyalgia and that the constant stress of caring for mum most likely brought it on. It was relief just to have a Dr mention the possibility of a condition with a name, instead of looking at me an shrugging their shoulders.
He sent me out with a script for Amitriptyline I got the tabs and eventually after about two weeks I was brave enough to take one, the relief was great and I got over the not being able to move on the drug after a few days.
I reasoned that if it was the stress that brought the condition on then when I the stress was lifted the fibre would just go again,, not that I was wishing mum dead, I loved her dearly and miss her so much (tears!!!!!) I worked on not reacting to lives stressors but I am actually a very calm person anyway.
A few weeks after Mum died, Dad was diagnosed with Small cell lung cancer, he lived for four years after his diagnosis and we mucked through together,, I remember one day dad breathless form his condition brushing the floor and me feeling so bad, but I just hadn't the energy to help and was so uncomfortable. He knew there was something wrong with me but I always tried to hide the fact. I don't talk about the condition to friends, they just don't understand, there is nothing wrong with me in there mind.
I get nothing done in the house, I go to get something and by the time I have got there I can't remember what it was I wanted to do.
I leave things sitting out to save me having to get down into a cupboard to look for them as the effort is just to much to even think about.
My muscles wear out and tighten up with very little effort.
I just can't do things for any prolonged period even something as simple as hold the phone up my arms just die.
Even reading a book causes me so many problems.
Besides the pins and needles in my hands my finger nails feel like someone has beat them (hard) with a hammer, and Oh god if they get cold the pain is unbearable.
From being a person who never stopped doing things, Running, Swimming, Cycling, Camping, Sailing, Woodwork, Piano, Gardening, French Polishing, Upholstery.
Just getting through the day now can be so trying, I get out of bed and trying to get to the bathroom is agony. By the time you get things going you are running out of energy and having to lie down again. The backs of my legs tighten up and the knees burn, the hips, back, shoulders and neck ache. The physio gave me stretches for the neck and they irritated it all the more and the acupuncture didn't seem to do much. I use magnesium citrate and I don't know what it dose but I am definitely a bit more comfortable on it.
It is not a life it is an existance and I really wonder about tomorrow, I know I have deteriorated much over the years even tho the all knowing Dr (with picky use of words tries to suggest it is all in my mind) say's it doesn't get worse. I was on Lyrica which was great at first but stopped working after a few months.
I wish I could find a Dr who has the condition there is bound to be some out there I know it is not in my mind, I just avoid going near the Dr now they don't understand there was one Dr who sat and told me to go running and swimming every day,, and I just sat there down trodden and took it,,, but I didn't go back near him, the good ones are bad enough !
On reading through this it's a frustrated rant but I am going to post it anyway maybe someone can relate to my experience.
Best Wishes, Ray