Sam Knell's Story
I have probably had Fibromyalgia for about fifteen years now - but because this condition is so insidious it is difficult to know when it exactly began. I had back problems for the first few years, and then neck problems exacerbated by a road traffic accident. This was also compounded by constant neck ache, stiffness and later acute fatigue and joint pains.
I would wake every morning feeling as if I had been run over by a steam roller and finding it very difficult to get up and get going. I searched constantly for an answer, constantly going to my doctor, until I felt they thought I was probably a hypochondriac, as I looked fine.
I was an extremely healthy and fit person who swam a mile three times a week. I cycled, walked and was constantly decorating the house or sewing for myself and other people. I upholstered three piece suites, painted houses and generally didn’t have enough hours in the day to do what I wanted to do. I also had my house to run, two part time jobs and a husband and two children.
Gradually, I found I was unable to continue - I was experiencing very poor sleep, and it became difficult to function on a day to day basis. Fibromyalgia was eventually diagnosed, so I took myself off to try and find the reason why I had it and hopefully a cure. It was not something that was widely advertised and many health professionals didn’t seem to know a lot about it. The more I read, the more I realised that there was no easy answer - there was no cure.
There seemed to be no part of my body that wasn’t affected - I had pains in my neck, back, joints and feet and heels. The pain in my neck affects my shoulders and arms so carrying or holding my arms up are impossible. There were symptoms that I didn’t realise were part of Fibromyalgia which affected me deeply as well. I have a constant dry mouth and experience sharp stabbing pains in my eyes, as if someone is stabbing them with a needle. My chest aches and I have a continual cough and constant dry mouth.
I am unable to stay in one position for too long, and if I sit still longer than twenty minutes all my limbs seize up, particularly my legs. When I get out of bed in the morning, my feet feel as if they are treading on broken glass until the sensation gradually fades away. Repetitive actions such as painting and DIY tasks are now impossible as the motion sets off unbearable pain and pins and needles in my neck, which radiates down my shoulders and arms. Carrying anything, including shopping, is impossible, as it can take a day or more to get over the experience.
At night I have restless legs, which sounds bearable, but keeps me awake for hours. Consequently when I do finally fall asleep the quality of sleep is not enough, which then aggravates the condition even more. I have become very sensitive to light and sounds, and can be lying in bed when I hear a bang or a noise - my body literally goes into shock, although the sound is not particularly loud. The same can happen with light: if a light is turned on while I am dozing, my body jumps into action, and then takes hours to settle down again.
My immune system is low, which means I catch any viruses that are going around. All my muscles are tense and stiff, even the ones in my face, which is horrible as it feels as if you have forgotten how to smile! I experience pins and needles constantly in my cheekbones and head.
One of the strangest symptoms is the fact that it becomes precarious to drive at night, as your eyes are definitely affected. You also lose the capacity to recognise places and directions are hopeless to follow. You can be driving through an area you visit daily, and all of a sudden, it is unrecognisable, which is very disconcerting. If I have to drive somewhere new, I can get very panicky and have to continually look up directions. This is from someone who travelled the world for three years before finally settling down, so it is very hard to accept.
I resent the fact that I cannot do what I was able to do, before contracting Fibromyalgia, and even just typing this report means my neck and shoulders will not recover for a few days. I try to pace myself but it is difficult when I feel constantly fatigued. I know that if I let this take me over, then I will deteriorate even more and at present I know only a few people who are continuing to work, as most with this condition have given up. It may be partly due to the fact that I am the only breadwinner, and if I don’t work, I would have to claim benefits, which I would prefer not to do.
I think the worst thing of all is that this condition is invisible to the naked eye. I get told how well I look a lot of the time, and I could scream how bad I feel, and how everything hurts, but I know this is not the answer. Because your body hurts all the time, it is easy to get depressed and to lose your self-esteem. Your co-ordination skills are affected so things such as handwriting and kitchen tasks become very difficult. You have little strength in your hands to grip or open bottles and cans. Your reactions and responses definitely are affected, becoming much slower and you frequently get words mixed up or forget peoples’ names.
I found all this very hard to accept, but on reading how Fibromyalgia affects the brain, have accepted that it’s not just me being stupid.
 
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