I was recently diagnosed with fibromyalgia – a long-term condition that causes pain and stiffness all over the body, as well as also causing fatigue and problems with mental processes. Before the diagnosis was suggested and I started researching it, I was one of the naïve people who thought management of fibromyalgia was fairly straightforward. Little did I know about the debilitating nature of it. My attitude of just wanting to ‘get on with life’ is the worst way to think about it and I’m having to learn how to look after myself in a completely different way. Here are some things I’ve learned about fibromyalgia.
1. An estimated 2.9% to 4.7% of the general population has fibromyalgia. It is difficult to measure as it is possible there are people suffering without a diagnosis (primarily due to lack of knowledge and awareness about the illness).
2. It is a chronic widespread pain and fatigue disorder possibly triggered by a traumatic event, either physical or emotional, but sometimes the trigger cannot be identified.
3. Research has shown that pain is experienced due to decreased serotonin in the central nervous system and increased substance P in spinal fluid leading to disordered sensory processing.
4. Other symptoms such as lack of restorative sleep, profound fatigue, headaches and altered functioning of the bowel and central nervous system are linked but the cause is yet to be found.
5. For some people the symptoms are mild,and they can lead a fully functioning life managing their fibromyalgia in the background. Others are highly debilitated by it and cannot partake in paid work or enjoy much of a social life.
6. Diagnosis is difficult because the symptoms are very similar to other conditions. What it’s like to live with both a mental and a chronic illness simultaneously Patients will undergo a series of blood tests and scans etc to rule out other conditions and fibromyalgia is a ‘diagnosis of exclusion’ which means there’s no specific test that will come back as positive.
7. Some doctors have limited knowledge of fibromyalgia and inaccurate understanding of its origins, nature and management techniques. Unfortunately, this has been my experience. You can ask your GP for a referral to a specialist clinic.
8. There is currently no cure – treatment can involve input from rheumatology, neurology, physiotherapy and psychology. Some medications such as painkillers and anti-depressants are commonly used, also muscle relaxants, anti-convulsants and anti-psychotics can be used at times. Engaging in a specialised exercise programme is an important part of management. Anything to aid relaxation can help, and some people find complimentary therapies such as acupuncture, massage, manipulation and aromatherapy are useful.
9. Pacing is an important part of management. I’m someone who doesn’t really know when to stop, I just keep going ignoring the pain and fatigue as best I can. But this has been shown to make the condition worse and harder to manage. Learning to manage both emotional and physical stress is important and sufferers need to learn when to say ‘no’ and when to push themselves with planned rest periods.
10. The condition can stay stable, get worse or get better. The important message is that with the right support it is possible manage fibromyalgia and be a survivor!