Fibromyalgia Part 1……..

During my teenage years I experienced periods of feeling very unwell. I felt tired and achy, had bad migraines and unexplained tummy aches. I missed a lot of school because of it. I was taken to the doctor by my worried mother, but they could never find anything wrong. I know that my grandfather and mother often thought that I was playacting. I was told that my disordered eating was the probable cause. When I lost weight at 18 and started a new hobby of trampolining I did start to feel better.

Fast forward to the autumn 2004. Following my breakdown after my attempt to become a teacher I decided to pursue a career in software engineering. I enrolled in a masters course and I loved it. I passed with distinction and found my dream job which I started at the beginning of 2006. I was at my heaviest weight of 300 lbs and my health was suffering. I needed a few weeks off in June to recover from umbilical hernia surgery and I was paranoid at how this was being viewed by my colleagues. This was exacerbated by requiring more time off in the December of the same year for carpal tunnel surgery. Following this I was determined to get myself healthy. In February 2007 I made the decision to take control of my eating once and for all and had a gastric band fitted. Initially all was well; I rapidly lost weight and was feeling really good about myself.

That summer I was sat at my desk and my arms felt like they were burning. Nothing I did made any difference; painkillers didn’t work. I thought maybe I needed to have carpal tunnel surgery on the other hand so I was referred back to my hand surgeon. After nerve conductance tests came back negative he referred me to a rheumatologist.

By the time I saw the rheumatologist I was experiencing pain all over my body and the most debilitating fatigue. It felt like a whole pint of blood was drawn for testing for every possible condition imaginable. The only thing it showed was that I was vitamin D deficient; hardly surprising as I have always hated the sunlight and prefer to stay indoors. I was asked to strip down to my underwear and every inch of my body was scrutinised. I was prodded at particular points on my body and each one was really painful. The points are shown in the diagram below:


In order to qualify as having fibromyalgia 11 out of these 18 points need to be tender; I had all 18. I was prescribed strong painkilling patches and told attend a coping skills program. I also had a course of hydrotherapy. I tried to do a phased return to work in early 2008 but finally had to admit defeat in late March. I haven’t been able to work since.

My condition rapidly deteriorated. I became light and noise sensitive and had to use a stick to walk. I hated being a burden on my family. I’d finally got my depression under control and now they had to deal with this. I did have some very low times coming to terms with my situation. It just seemed so unfair.

The medical advice for sufferers off fibromyalgia is to pace your activity and undertake some gentle exercise. My fatigue was so profound that this was impossible for me, even showering would wipe me out for the entire day. Sometimes I would force myself to do things but this would take me days, sometimes weeks to recover. If I didn’t have the gastric band I know I would have eaten my way into oblivion. My diet though was still not very healthy. I was too tired to chew the healthier food groups and instead lived off high fat, high sugar foods like chocolate and biscuits. I knew it wasn’t going to help my situation but I felt trapped. Although I did regain some weight it stabilised.

I have a very active brain and really struggle when I’m not using it. I started to look for things I could do. My Macbook became my link to the outside world. I did some university/college level courses on anything I found interesting, I have always loved to learn. I also took up a number creative projects; as long as I could break it up into 10 minute sessions it would work for me, one of these was reborning. Reborning is the creation of life like baby dolls by painting many thin layers of paint to build up a realistic skin tone. I would do one layer at a time and rest in between, it was ideal. Below is a photo of a doll I completed this year.



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