Chair, Fibromyalgia Action UK
Fibromyalgia is not only a chronic pain condition (although that is how most people come to know it) – it drains your energy while family, friends and you, grieve for your previous life.
Fibromyalgia or, ‘fibro’, can alter the life of anyone. All over pain, non-refreshing sleep and fatigue are the symptoms that become your constant companions. It’s a challenge to achieve a diagnosis with no simple blood test and you may also meet unsympathetic health professionals. There is much that we don’t know about fibro, including its cause, but people’s lives are destroyed by it.
Lack of knowledge or research impacts the pain and anxiety that people with a chronic condition experience.
Early intervention is so important, but it can take years to be diagnosed. Lack of effective treatments or having to try numerous options before finding something that improves quality of life by a small amount is the norm.
Fibromyalgia is much more than just pain, but it’s not all that we are, and to make each day have worth it is good to have achieved something.
We hear of patients having treatments withdrawn immediately without any replacement, forcing them to endure increased pain and emotional distress. When patients ask to manage their pain with a previous treatment regime, they may be labelled as having drug seeking behaviour, which makes their journey harder.
Chronic pain – what is it?
Chronic pain is pain that’s always with you. Imagine three to six months with pain all over, that you can’t escape from. We measure pain on a subjective scale between one and 10. Your headache, gauged a ‘three’ could stop you finishing that important presentation for work, but it goes away.
My ‘three’ at the moment is constant leg pain while I write this article. That is annoying, but it’s my normal. I distract myself from it and achieve things to make my day worthwhile. The sadness I felt when my son winced at the pain he thought he caused when he cuddled me was harrowing – but I am more fortunate than some to be writing this with my chronic companion at three.
What is a working treatment?
A working treatment is when a patient’s pain goes down the scale. Bringing a pain score of eight down to three, for example, is great.
Fibro is much more than just pain, but it’s not all that we are, and to make each day have worth it, is good to have achieved something. Fibromyalgia sufferers cherish small achievements or moments with family as the gains with their pain.