Each year, Friday 12th May is recognised as fibromyalgia awareness day and the international awareness day for other chronic immunological and neurological conditions, including myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). May 12th was chosen as the awareness day for ME, CFS and fibromyalgia as it is the birthday of Florence Nightingale, since it is believed that she herself lived with ME and CFS.
What is fibromyalgia?
Fibromyalgia is a chronic, long-term condition involving widespread pain, a heightened pain response, and overwhelming fatigue. The name fibromyalgia is derived from Latin: fibro for fibrous tissues such as tendons and ligaments; my for muscles; and algia for pain.
The severity, location and duration of pain varies for each person and between groups of people. The fatigue ranges from feeling tired to complete exhaustion. This may come and go, and people can suddenly feel drained of all energy, a bit like “pulling the plug”!
Besides pain and fatigue, fibromyalgia symptoms often include:
- Un-refreshing sleep, waking up tired and stiff;
- Cognitive disturbances, including a lack of concentration, temporary memory impairment and mixing up words, also known as “brain fog”;
- Clumsiness and dizziness;
- Headaches, ranging from ordinary types to migraines;
- Irritable bowel syndrome, alternating between diarrhoea and constipation, sometimes accompanied by nausea and abdominal gas;
- Sensitivity to changes in the weather and to noise, lights, smoke and other environmental factors.
Fibromyalgia is more common than you may think
To the surprise of many, fibromyalgia is a common condition, though few people are aware of it. A Europe survey of five counties estimated that 2.9% to 4.7% of Europeans were living with fibromyalgia. In the UK, this equates to nearly 2 million people, meaning that fibromyalgia is more common than Alzheimer’s disease and multiple sclerosis (MS), which affect approximately 1 million and 100,000 individuals, respectively. We also know that many people with fibromyalgia may either be undiagnosed or misdiagnosed with another condition, so it is likely that this number is even greater.
Diagnosing fibromyalgia isn’t straight forward
Although fibromyalgia is not a new condition, it is difficult to diagnose because it cannot be identified in standard laboratory tests and investigations. Moreover, many of the signs and symptoms of fibromyalgia are found in other conditions, such as ME and rheumatoid arthritis. These conditions are often excluded first before a fibromyalgia diagnosis is made. When this point is reached, the diagnosis depends largely on two symptoms: pain in all four quadrants of the body for at least three months and pain in at least 11 out of 18 ‘tender’ points on the body when they are pressed.
Treating fibromyalgia is equally as difficult
Current treatment for fibromyalgia attempts to treat the symptoms of the condition, rather than the condition itself, as not enough is known about the underlying mechanisms that cause the condition. Treatment largely aims to reduce pain and improve sleep, leaving people to experiment with different self-management techniques to ease symptoms. A combination of heat, rest, exercise, relaxation techniques and measures to reduce stress can enable some people with fibromyalgia to maintain a productive life. Healthcare professionals may refer people to a physiotherapist or occupational therapist for further treatment and advice. People are sometimes referred to a pain clinic, which may not take the pain away, but it can help lessen the impact on daily life. Since pain can affect your mood and behaviour, psychological support may be useful. Therapies such as cognitive behavioural therapy (CBT) have helpful to several people with fibromyalgia.
With fibromyalgia, there are certainly good and bad days. On a good day, it is easy to overdo things, which may simply make matters worse. We often feel guilty for taking time out to rest, but it’s essential that we listen to our bodies when it is telling us to slow down. I’ve learned this the hard way – by doing too much, and not prioritising my own health first!
Introducing Fibromyalgia Action UK
Fibromyalgia Action UK is a registered charity working to improve the lives of people with fibromyalgia by increasing awareness of the condition, improving access to fibromyalgia treatments and providing support to people living with fibromyalgia and their families. In addition, Fibromyalgia Action UK provides medical information for professionals, operates a national helpline, manages an online support forum and links up to a UK-wide system of support groups working at local and regional levels. In 2016, I was delighted to join the charity’s board of trustees, where I am committed to improving the awareness and support available for people living with fibromyalgia across the UK. I am particularly keen to help increase the support available to young people with fibromyalgia, having lived with the challenges of the condition for several years myself.
Support is available
Fibromyalgia Action UK operates a national helpline for people living with fibromyalgia (0300 999 3333). The charity also operates a benefits helpline (0300 999 0055). There’s lots of useful information on Fibromyalgia Action UK’s website, including patient information booklets and medical packs for healthcare professionals. In addition, Fibromyalgia Action UK has several local support groups around the UK. The charity’s regional coordinators can help to put you in touch with a group nearest to you. Simply visit support groups on the Fibromyalgia Action UK site, select the Regional Coordinator for your area and send a message including your post code.
Some of my top tips for dealing with fibromyalgia
If you live with fibromyalgia, there’s no doubt that you will have experienced patronising, derogatory or insulting comments and advice about the condition and how you should better manage it. If I had a pound for every time that someone has told me to pace myself more and do less things, I would be a millionaire by now! It is more about finding what works for you – what you can physically and mentally manage, while doing things that you love and enjoy. Therefore, here are some of my coping strategies which I try to do myself. Be warned though – one size doesn’t fit all, and what may work for me may not work for you!
- Make time for yourself each day. Fibromyalgia adds so many extra demands to our lives each day, on top of what the average ‘healthy’ person has to deal with. It is perfectly justifiable and necessary for you to make time each day for you – whether it be out in the garden, an afternoon nap, getting lost in a good book or a walk to the local park. Do something for you, and never feel guilty about doing so.
- Adjust your sleeping arrangements. Many people with fibromyalgia have problems related to sleep – I certainly do! I try to ensure that my body is ready for sleep by avoiding technology immediately before bedtime (which I am not particularly good at); reducing caffeine in the evening and by exercising when possible (which may simply be a gentle five minute walk near to where you live).
- Work smart, not hard. I’m pretty rubbish with mornings, especially towards the end of a busy working week. No matter how many hours I’ve slept, I still wake up feeling exhausted – I’d say it compares to running ten back-to-back marathons! As the day goes on, I tend to feel a little better, and so I may decide to work from 10.30 am until 6.30 pm, instead of the usual 9 to 5. Other people I’ve spoke to will work in the afternoon and evening instead. It’s all about finding what works for you. As long as you manage to do what you need to do, does it matter when you do it?
- Use mind and body techniques to help you to relax. There are lots of techniques that you can use to ease tension and anxiety. Examples include meditation, mindfulness, muscle relaxation and visualisations. Switching off from the busy world around us is so important!
- Soak in a warm bath or stand under a warm shower. This may help you to relax your muscles and reduce pain.
- Keep a journal. Writing can be a great way for you to express your feelings. It can also help you to observe patterns in how you feel, and you may begin to associate events with symptoms, and therefore adjust what you do accordingly. There are lots of ways to do this – from the good old pen and paper, to smartphone apps. It doesn’t necessarily have to be words either – lots of people take pictures and videos too! I keep my ‘reasons to be thankful’ book next to my bed, and each evening, I write three things that I am thankful for. It’s a small task that reminds me to love and live life to the full, despite the challenges that exist!
“Live your life while you have it. Life is a splendid gift – there is nothing small about it.” Florence Nightingale
Do your bit for people with fibromyalgia
Help to raise awareness about fibromyalgia simply by sharing this post online. Don’t forget to use the hashtags #FibromyalgiaAwarenessDay and #May12th!