I have mentioned before that during my adolescence I experienced periods of feeling very unwell. I know that both my mother and grandfather (who was a retired nurse) thought I was playacting or that my way of eating was to blame. Not being believed has had a lasting effect on me.
When I was diagnosed with fibromyalgia there were many people who thought I was malingering. Even my husband thought I was exaggerating my symptoms. What was so hurtful was that my mother in law was diagnosed with chronic fatigue syndrome a couple of years earlier and he was full of sympathy and understanding. It took a number of years for him to realise that I was really ill.
One of the problems with fibromyalgia is that the symptoms are pervasive. It is very difficult to decide which symptoms are down to the fibromyalgia and which are indicative of something new. In May I had severe back pain and was told by a doctor that it was down to fibromyalgia. I had the same pain a month ago which I ignored even when it became so severe that my strongest painkillers didn’t touch it . It took me two weeks to go to the doctor and I was told that I also had a fever and tachycardia. I was diagnosed with pyelonephritis (infection of the kidney) and was nearly hospitalised. Fortunately I responded well to oral antibiotics and I’ve now recovered. This situation wouldn’t have escalated if I hadn’t had the fear of not being believed. I now have urine testing strips and a digital thermometer at home so I can check both if this happens again.
There are some in the medical profession that don’t accept fibromyalgia as a genuine medical condition. I have been fortunate enough to have a GP that is open minded. It is very difficult to get an appointment with him if I have an emergency such as a few weeks ago; it’s just the way the NHS is at the moment. I live in hope that current research will eventually find the cause of fibromyalgia so that I and other sufferers can feel some vindication.