I think it’s fair to say that the symptoms and effects of fibromyalgia on both the sufferer and their loved ones are wholly misunderstood. This may be due to the fact that the symptoms can’t be physically seen plus the fact that people’s knowledge on the subject is extremely limited.
My daughter Georga was diagnosed at the age of 18 after many, many tests at our doctor’s and local hospital. However, we had to pay privately to have her diagnosed as I could not stand to see her suffer any longer. We ended up searching for a specialist that was not too far away and as luck would have it there was a consultant based at Lincoln Private Hospital that saw her within a week. Her journey up until that point was very distressing. I remember we had done our own research on the symptoms and we thought she may have fibromyalgia but needed it confirming by our doctor. His attitude was old school (what a moron – thank god he buggered off to practice in Australia).
“I don’t believe there is such a thing. It’s all in your head.” – Dr Moron
I remember she cried when we came out of the consultant’s office because she was so relieved to put a name to her symptoms. However, her journey did not end after the diagnosis. She had to learn to live with the pain, chronic fatigue and the fogginess that affected her mentally. She had many different painkillers some of which made her sick, and some which made her hallucinate. After a year she had had enough and decided to deal with it holistically.
That was five years ago. As every sufferer knows there are good days and bad days and symptoms can last days, weeks or even months with no relief. That’s what’s happening at the moment. She’s spent most of her days in bed these past four weeks as she just does not have the energy to move. Her chronic fatigue has taken over her life.
As a bystander it’s not easy to watch, especially if you love them dearly. The key to keeping her going is being positive, making sure they eat healthily, putting things into perspective and making her laugh. That I can do. YES it’s tiring sometimes, but so what!
If you have fibromyalgia and are struggling getting your message across to friends and family send them this short Myths versus Facts infographic.
Alternatively, send them a link to this BBC Stories video (Living with chronic pain) on YouTube. If they’re still not listening – send them my way and I’ll sort them out!