Fibromyalgia Part 2……..

My fibromyalgia symptoms meant that I could no longer do my share of work around the home. Everything fell on David and I hated it. Fortunately I qualified for disability benefits so we were able to afford a cleaner and someone to help with the laundry and changing the beds. David still had to do the shopping and cooking as well as looking after me and working full time. He started to work predominantly from home which was a great help. I could not have coped in anyway without David’s support.

My pain levels varied from day to day but I was never without it. The initial buprenorphine patches had the side effect of making me itch all over so my doctor switched me to sustained release oxycodone. They did help but made me feel so doped up that they affected my quality of life. I made the decision to step down the analgesia ladder. I’ve finally got the balance right. I now take sustained release tramadol and prescription strength co-codamol as and when I need it throughout the day. I have a low dose of oxycodone for emergencies which works well because I take it only when necessary.

Although the predominant symptom of fibromyalgia is the pain there were other aspects that troubled me more. I permanently felt like I had the flu and couldn’t regulate my body temperature. My brain felt fuzzy; this is a well documented symptom known as fibro fog. Spending so much time at home resulted in agoraphobia so not only did I feel like a prisoner in my body, I felt like I was prisoner in my own home.

It is only in the last 18 months that I feel I have made any progress. Losing a lot of weight has really helped my mobility. It still hurts to walk but it feels easier. I’ve very recently managed to build a short walk in everyday and although it tires me out for the rest of the day it has helped to elevate my mood. I don’t know how maintainable my current regime is because it is still early days but so far so good.

I have had mixed responses from other people with regards to my fibromyalgia. Most people just don’t get it; some go as far as thinking that I’m malingering. Some people can’t accept that there is nothing that can be done or that I’m not complying with medical advice. Believe me if there was anything I could do differently to get well I would be doing it. There are a few people that really do understand and are invaluable to me.

I’ve often wondered why me? The cause of fibromyalgia is unknown but I am convinced that there is a strong genetic component. I think I’ve been having symptoms since my teens but it only became severe after a series of events.

  • The mental breakdown when doing my training.

  • A severe case of tonsillitis during my masters degree.

  • The gastric banding surgery.

I think that these happening in quick succession overloaded my brain/body and something had to give. I don’t think I will ever be ‘cured’ but I will continue to strive to make the best of the hand I’ve been dealt.

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