International Fibromyalgia Awareness Day is just over two weeks away, taking place on Saturday 12 May 2018. Each year, May 12th is recognised as international fibromyalgia awareness day and the international awareness day for other chronic immunological and neurological conditions, including myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Fibromyalgia Action UK’s theme for 2018 is ‘Don’t Delay, Connect Today’, which aims to highlight that early diagnosis and recognition of fibromyalgia, and timely access to evidence-based treatment and peer support, are essential for the long-term health and wellbeing of those living with fibromyalgia and their families.

May 12th is significant since this coincides with the birth of the mother of modern nursing, Florence Nightingale, who became chronically ill in her mid-thirties with fibromyalgia-like symptoms. The awareness campaign now takes place every year on May 12th, and in the UK, Fibromyalgia Action UK along with other groups aims to raise awareness of fibromyalgia and the impact it has on the lives of so many people.

International Fibromyalgia Awareness Day aims to get as many people as possible talking about fibromyalgia, and for the first time in 2018, Fibromyalgia Action UK have decided to use a theme to co-ordinate events on awareness day. So this year, the theme of ‘Don’t Delay, Connect Today’ is being used to emphasise the importance of early diagnosis and recognition of fibromyalgia, in addition to timely access to evidence- based treatment and peer support for those living with fibromyalgia. This theme has been inspired by the European League Against Rheumatism’s ongoing ‘Don’t Delay, Connect Today’ campaign.

FMA UK Fibromyalgia Awareness Day 2018 Facebook Banner v1.0

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 around 1 in 20 people. We also know that as many as 3 out of 4 people with fibromyalgia may either be undiagnosed or misdiagnosed with another condition, so it is likely that the number of people with fibromyalgia is even greater.

FMA UK Fibromyalgia Awareness Day 2018 Poster v1.0 copy

Diagnosing fibromyalgia is not straight forward

Although fibromyalgia is not a new condition, it is difficult to diagnose because it cannot be identified by 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.

However, for fibromyalgia to be diagnosed, certain criteria must be met, which typically include:

  • Severe pain in three to six different areas of the body, or milder pain ins even or more different areas;
  • Symptoms which have stayed at a similar level for at least three months;
  • No other reason for your symptoms has been identified.

Historically, diagnosis often focused on: 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. The application of gentle pressure to ‘tender’ points as part of the diagnosis is less common nowadays.

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 in the UK 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. I’ve now been on the board of trustees for Fibromyalgia Action UK for two years, committed to improving the awareness and support available for people living with fibromyalgia across the UK, as well as improving access to research opportunities and pushing for further research into fibromyalgia.

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.

Get involved in raising awareness

There are lots of ways that you can help to raise awareness about fibromyalgia ahead of International Fibromyalgia Awareness Day. The official campaign pack, developed by Fibromyalgia Action UK, can be found at: http://www.fmauk.org/campaigns – here, you will find lots of resources for you to share, including posters, social media banners, and infographics. You can also also:

  • Sign the Thunderclap, which will go live at 12 pm (GMT+1) on Saturday 12 May 2018 with an automatic message posting on your social media platforms. You can sign up by clicking here.
  • Add a frame (also known as a Twibbon) over your existing profile picture on Facebook and Twitter to show that you are supporting International Fibromyalgia Awareness Day! Click here to add yours.

Please also feel free to share this post online, and don’t forget to use the hashtags #Fibro2018 #FibromyalgiaAwarenessDay and #May12th!

FMA UK Fibromyalgia Awareness Day 2018 Thunderclap Banner v1.0 copy

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Written by simonrstones

Simon Stones BSc (Hons) is an award-winning patient leader, advocate and researcher from Manchester in the UK, who was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with invisible illnesses, inspired and empowered by his own journey with arthritis, fibromyalgia, and inflammatory bowel disease since childhood. He is currently an Associate Fellow of the Royal Commonwealth Society, and a trustee of Fibromyalgia Action UK and RAiISE.

One comment

  1. Thank you so much for this article. My husband is very understanding of my fibromyalgia but I have a daughter who refuses to believe and it has ruined our family relationship. I am 71 years old and worked over 50 years and raised three kids alone until I remarried and then had 7 kids. She feels I always did everything and now I am just being ridiculous and shouldn’t believe my doctors.

    Like

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