In 2003 I was diagnosed with Fibromyalgia (FMS). Basically it means painful muscles, but this debilitating illness is so much more than that. It affects every sufferer in different ways so I can only talk about what is happening to me.

Fibromyalgia affects the ability to sleep in a productive way. Sufferers typically fail to reach stage 4 sleep which produces a drug that helps to repair muscles used throughout the day. Therefore, even though I may sleep for a few hours, I still wake up feeling tired and sometimes I can feel like I have had no sleep at all. I am lucky to sleep for 4 hours straight without waking up. I also suffer from very vivid dreams that make me wake up feeling like I have been in a living drama. 

Lack of decent sleep means that I feel groggy and unproductive, especially as the day marches on and I am busy. I recently completed a 2 year course at university and achieved a distinction. But that distinction was hard fought and I found studying, at times, to be nigh on impossible. I was reading books and not reading what was actually on the page. Concentrating for extended periods of time was difficult and attending lectures was confusing. Luckily I qualified for a Disabled Student's Allowance, and was given a dictaphone. This dictaphone was a life-saver for me. I would forget that the lecturer was saying even as I tried to write down what they said. By the end of the sentence I forgot what had been said.

This was really difficult for me, because prior to succumbing to FMS I was a bright and intelligent person, who could multitask and could revise just before an exam and pass with flying colours. The FMS and its accompanying Fibrofog (the term used for the symptoms described above) made me feel incompetent and confused. 

However, my own personal high standards and determination made me fight hard to succeed and I am very proud of my achievement. 

The worst thing with my FMS is not the chronic pain, believe it or not. To be honest, a person can get used to pain when they suffer it for long enough. I have been suffering from chronic pain since 1995 when I developed Symphysis Pubis Dysfunction during pregnancy. Ever since then I have lived with a burning, intense pain from my pelvis down and the FMS is just more pain on top. Painkillers don't really help me. I try not to take them, as I develop immunity and intolerance of them after a while. After taking Tramadol since 2003, I developed a severe itching two weeks ago and now I can't take them again.

What I find the worst thing is the chronic muscle stiffness I have developed. Any jarring of my body, or jerking, whether through a fall or by using faulty equipment like a dodgy lifting ramp, will exacerbate the stiffness and will cause my muscles to contract to such an extent that they "lock up". The pain when this happens drives me to tears and I can't cope with it. No painkillers will help to ease the pain and in extreme circumstances I will require Diazepam under medical supervision. 

Two weeks ago i tripped and fell over at home. I don't mobilise very well and can only walk a short distance without  encountering muscle stiffness and pain. My balance is poor and I use a wheelchair outside the house for both safety and practical reasons. Although I was home alone, my family were able to come to me to help me, but time is of the essence and within 10 minutes of a fall I require emergency treatment. My muscles lock me up to such an extent that I become a dead weight and require entonox to be moved without unbearable discomfort. We called the ambulance, but it took 5 HOURS for them to arrive. By this time I could not be transferred from my wheelchair and had to be transported to the local A&E in my chair. 

I had injured my big toe quite badly. They suspected a fracture, although later inspection could not see obvious evidence of a break. However, the toe was weeping and very tender to the touch even today. 

Prior to this fall I was feeling very sleepy all week. I had no energy and wanted to sleep constantly. I have been feeling bleurgh for a few weeks now and very down with it.

One of the symptoms of FMS is depression. Some experts believe that FMS suffered lack the ability to produce enough serotonin in the brain, much like a diabetic may not produce enough insulin. Therefore the treatment is often tricyclic antidepressants in the amitrypteline family of drugs. Once again, I cannot take this medication as it makes me suicidal. 

One of the other things I have developed are food and other intolerances. I cannot eat meat or meaty fish, cheese or eggs. I cannot stand strong smells, like perfume or strong food. I cannot stand loud noises and have developed unease in crowded situations. I fear constantly for my personal safety and feel quite vulnerable. However, because I speak well and confidently I am able to hide these feelings quite well in public. I know I don't have the strength to fight off an attacker and I will always talk to someone on my mobile phone if I go out on my electric scooter so that I have some company. This is so contrary to my previous personality that I hardly recognise myself any more.

I suffer with IBS and with weight problems. I find it hard to exercise, as my muscles do not work for long without ceasing up and requiring medication to release them, No wonder, I guess that I often feel down and have little self-esteem. 

I had to give up an excellent salary and brilliant job working for a major High Street Bank because I was too ill to work. Now I see a future of money worries and little ambition. It is not feeling sorry for myself; I am just stating my personal feelings right now. Sometimes I feel better. I am writing a novel and hope it could do well. But I seem to lack enthusiasm for doing anything right now. I just feel burnt out and worn out. I know it's the FMS at the root of it all.

I am not writing this blog article for sympathy or pity. In fact, just the opposite. I know a few FMS sufferers who feel so alone with their illness. People who don't have it just don't really understand how it can turn your life around. Many think we are hypochondriacs or suffer from Münchausen's or whinging complainers. Often suffered don't look ill at all, but feel truly dreadful beneath the public façade they exhibit to the outside world. Often we cover up our true feelings by making jokes about ourselves to others, who often feel more comfortable joining in than accepting that the other person may be feeling like rubbish. 

I hope that just one person reading this blog will identify with me and how I am feeling today as I write this blog. I am not on a "up" day today; rather a downish one. I had to be sent home in a studio car from Million Pound Drop last Friday after their broken equipment triggered a flare-up and I was in tears on the floor of the crane lift. That was not embarrassing for me, but rather frustrating and I was angry with my illness for ruining a night out I had been looking forward to for weeks. It also ruined my friend's night as she had to leave with me.

I need some positive encouragement for moving my life forwards. I need to be able to earn some money for my own sense of dignity and for real practical reasons as well. Just right now, sitting here in my recliner chair typing this blog, I can't see the wood from the trees. But at least I am honest.


    I am 37, bright, opinionated and disabled through Fibromyalgia. I enjoy writing and speaking my mind. I also like to help people and share my experiences to do so.


    September 2011



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