It was 20 years ago today (almost) that, after being treated for rheumatoid arthritis for 2 years I went to see my doctor as I was ill yet again. He signed me off for 1 month. A month? That is ridiculous. But he was right. He hadn’t been trying to tell me for a few months that I couldn’t keep working like I was doing. I was a physical wreck. I hadn’t slept well for over 18 months, was constantly tired, my body was aching and I couldn’t think straight. That was June 2000 and I never returned to work again.
I was another 12 months before I was properly diagnosed. The consultant who had been treating me since September 1998 for rheumatoid arthritis was wrong. A second opinion from another consultant re-diagnosed me in less than 30 minutes. He told me I had fibromyalgia. Eh? Never heard of it!
YNWA – You’ll Never Work Again
My doctor told me straight, having been off work for 12 months already, that I would not be returning to work. I was, by then, 36 with three young children. Retiring at 36 sounds ideal, but I had worked since leaving school and was suddenly unable to work.
What is Fibromyalgia?
I am still learning about it all these years later. It is a syndrome which means that there are a collection of symptoms gathered together under the one umbrella term of fibromyalgia. The definition is fibro= fibrous tissues of the body, my=muscles, algia=pain.
The definition is given as: “A rheumatic condition characterized by muscular or musculoskeletal pain with stiffness and localised tenderness at specific points on the body.”
Main symptoms of the condition are:
1. Chronic fatigue
2. Joint pain, stiffness and disorders
3. IBS (Irritable Bowel Syndrome)
4. Poor circulation and tingling in peripheries especially fingers and toes
5. Forgetfulness – short-term memory especially
6. Sleep disturbance
7. Lack of concentration
What I have learned over the years is that everybody who suffers with fibromyalgia has a variation in the symptoms.
What this means is that I have chronic pain in every muscles and joint in my body, 24/7, 365 days a year. However, the rheumatism aggravates it when it is just damp or raining. This causes every joint in my body to ache even more than it does usually.
One of the biggest changes was going from playing football, cricket and golf to not being able to walk 50 yards without pain in less than 2 years. That was a dramatic change to my life.
I haven’t had a good night’s sleep since the summer of 1998 – that is not an exaggeration either. I have tablets to help me sleep every night, but I never feel that I have had a good night’s sleep and always wake with a “hangover”.
I take about 16 tablets a day to keep me going and, after a while, you gain a tolerance to the pain, because you just get used to living with it. The associated conditions for me are generalised arthritis in my joints, diabetes (type 2) and high blood pressure, which all developed with the fibromyalgia.
There isn’t one! All they can do is treat the symptoms, hence the tablets.
Prescribing The Beatles
My doctor, the late Peter Griffiths, was an amazing support with coming to terms with living with fibromyalgia. He told me look for something that interested me and finding a new way to spend my day. It was then that I started writing about The Beatles and Liverpool for the London Beatles Fan Club, which became The British Beatles Fan Club, for whom I still write. Dr Griffiths encouraged me to pursue that, which got me out of the house and engaged mentally in following this as a hobby. It wasn’t until 2007 that I got a publishing deal for my first book, that became Liddypool. Little did I know how much that would change my life.
I loved the process of researching and writing Liddypool, so I wrote The Fab One Hundred and Four: The Evolution of The Beatles, again to critical acclaim. By now I was being invited to Beatles conventions in the UK and US especially. Amazing. I have jointly published a book with Beatles Biographer Hunter Davies, Finding the Fourth Beatle and working on 4 book projects at the moment. I was also engaged as the historian and Associate Producer for the documentary, Looking for Lennon. What a privilege.
Living with Fibromyalgia
So I still live with fibromyalgia and that is not going to change. Many people now know more about the condition than they did 20 years ago, though I am still learning about it. Celebrities like Morgan Freeman and Lady Gaga have helped to raise the profile of the condition, though there is still so much ignorance surrounding it, especially among the medical profession, which is tough.
BUT! I have made so many friends through having fibromyalgia and we help each other. That support is essential because it is a hard condition to describe. You can’t show somebody an x-ray, a blood test, a scan, to prove you have the condition. There is no physical test you can show anybody that says you have fibromyalgia.
Family and Friends
The support of my wife Alix, my daughters and extended family have been invaluable. I could not have done it without them. It also sorted out who those genuine friends were, because they were the ones who stood by me. Again, that has been invaluable. I have had so much encouragement and support it is truly humbling. Don’t be afraid to reach out.
if I hadn’t fallen ill and had to give up work, I would never have become an Beatles historian, author and researcher. I LOVE what I do. It has become my therapy and the best way to deal with a condition like fibromyalgia. I can do what I want, when I am able, and rest when I need to rest. Sometimes I over do it, and that knocks me out for a few days. But there is hope, if you are a sufferer too.
As some Liverpool band once sang; “And in the end, the love you take, is equal to the love you make”.
All You Need Is Love – and a pocketful of pills too!
More information about fibromyalgia from the NHS is here
Help and support is available from charities like Fibromyalgia UK