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Rebecca Barnard

2016-07-27 16:11

Jeanne's Story

I was diagnosed with fibromyalgia about 18 months ago following a range of tests which revealed nothing. I had been experiencing unexplained pains which varied from sudden, sharp pains in different parts of my body to deeper pain associated with arthritis in my knees and, bizarrely, across my toes. I was also getting headaches and pains in my chest and periods of what is apparently known as 'eye fog' - it could take a while for me to focus properly when I woke up in the morning. I was experiencing severe fatigue and this continues to affect me although it tends to come in waves and can come on quite suddenly.

The symptoms seem to have developed and progressed over a number of years but I kept 'managing' until I became so exhausted I ended up having 6 months off work during which time the diagnosis was made. I read up as much as I could about fibromyalgia and the symptoms seemed to fit. To begin with I was pleased there was a 'name' for my illness but then I went into denial as it wasn't conclusive nor, did it seem, there was a cure. This was not an acceptable option for me!

I am almost 62 but always busy and active - a former PE teacher and still working full-time as a university lecturer. I have had knee and back pain for over 15 years although these had been accounted for with a prolapsed disc, cartilage problems etc. - but the longer term problems do seem to be intertwined with my more recent symptoms. I do have arthritis in my knees and spine but this is classed as 'normal wear and tear' - I try not to let this hold me back.

The combination of intermittent pain I think contributes to the periods of extreme tiredness - and trying to manage this whilst working makes it difficult sometimes. Some evenings I'm totally wiped out and just have to go to bed. Other days I have quite a lot of energy - especially if there is music and dancing involved!! But then I generally suffer the next day. The pains in my toes and the aches in my knees usually affect me at night or during times when I'm just sitting still e.g. in meetings or when I'm watching TV.

Gabapentin seems to have been my miracle drug as after I started taking these the pain was dramatically reduced. I have dropped to two tablets a day from the original three - but was advised to do this in the summer as the doctor suggested that I would be better to wait until the warmer weather. I do resort to ibuprofen when the pain gets worse and also use the pain relief gel when I feel I need to massage it into the affected area. These all help in their own way.

Having experienced pain over a number of years and noticed that my knees in particular are affected by the weather - damp and cold - to the extent I could almost predict the weather - I thought I would participate in the study. I saw it being discussed on BBC breakfast one morning.

I am still not convinced I have fibromyalgia as other people seem to have symptoms far worse than mine however I intend to seek further advice if I can find the right consultant.

The Cloudy study is interesting and has been helpful - if nothing else it has made me realise I need to spend more time exercising and more time outside meaning I need a more effective work - life balance!

If you would like to get in touch with Jeanne, you can find her on the Health Unlocked Cloudy community under the username Jeannebz.