‘’I'm Holly Kirkby. I'm 16 years old and live in North Wales. In 2003, my mum's world was turned upside down when she was diagnosed with fibromyalgia.
Fibromyalgia is a chronic condition of widespread pain and profound fatigue throughout the human body. As like most illnesses every individual is targeted through different levels and stages. Unfortunately, my mum suffers severely from Fibro meaning the past 12 years of her life have practically been stolen from her. Fibromyalgia has prevented my mum from doing the most important things for any parent, such as providing for her family, participating in days out however their just the big things.
The past couple of years my mum has lost the ability to do the tasks most of us take for granted everyday, such as getting out of bed and getting changed every morning. Fibromyalgia stole that from my mum.
Walking, Lifting, Bending, EVEN EATING can be a daily struggle for her nowadays.
For mum this is affecting her in every stage of life, physically, intellectually, emotionally and socially.
On the Fibromyalgia Awareness Day, May the 12th, Space 4, a community group in Houghton-Le-Spring, Sunderland, organised an event in aid of fibromyalgia to raise funds and awareness. Jorgie Carmichael, a member of the group, who lives with fibromyalgia, said: ‘’The event was great. We raised over £137. Lots of people from the group and St Michael & All Angel Church Houghton-Le-Spring helped and brought items to sell and for the raffle.
We sold cake & savoury foods and many other items, from cuddly bees to homemade cards. One of the volunteers massaged hands and painted nails of some of the people who came in. We also held a raffle.
About Our Health Unlocked online community
Health Unlocked is FMA UK online Community Forum, where people can get support and information 24 hours a day, 7 days a week. Volunteer Admins support provides a welcoming environment for people affected by fibromyalgia. Volunteer Admins enable us to provide a better, more responsive service.
This role can be based anywhere in the UK, from home, and undertaken when it is convenient to the volunteer. No fixed time commitment is needed, however we will ask you to login and respond to tasks regularly.
What will you be doing?
- Supporting the discussion forum alongside other Volunteer Admins
- Helping to ensure the community forum is a relevant, welcoming and a supportive environment
- Posting messages to welcome new members to the forum and helping the Admin team to ensure that posts are replied to.
- Directing community forum members to useful resources on the FMA UK Community Forum or FMA UK website.
My name is Louise Maule and I am a fibromyalgia sufferer. It took 5 years for the diagnosis with a range of tests and different diets to try to see if it eased my symptoms. Every day is different and if I get flare ups it can completely take me off of my feet, looking after two young children daily it can be a struggle, I want to be able to be the mum I want to be and not have to say no to them as I'm not feeling well enough to play a game with them or run around the park.
I have now had fibromyalgia for 8 years and have learnt what triggers my fibromyalgia so I'm able to minimise flare ups as much as possible. Because of the length of time it took for diagnosis and because there is no treatment available I decided to make it my mission to raise as much funds as possible to aid Fibromyalgia Action UK in their research and support.
On the 11th May 2016 a Fibromyalgia Awareness event took place in the House of Commons, hosted by Andrea Jenkyns MP, organised by Fibromyalgia Action UK (FMA UK).
The event was well attended by MPs, researchers, healthcare professionals, students and people living with fibromyalgia, their families and carers. There could be some thrilling outcomes of this event resulting in greater collaboration between different stakeholders in the fibromyalgia field: patient organisations, healthcare professionals, researchers and policy makers. During the event Dr Toby Garrood, a consultant from Guy’s Hospital fibromyalgia clinic gave an overview of the award-winning and best-practice fibromyalgia multidisciplinary service, which can act as a role model to be replicated easily and at a low-cost in rheumatology departments of hospitals across the country. FMA UK will look intot how to facilitate the spreading of the knowledge about this service to relevant healthcare providers, Clinical Commissioning Groups, NHS England and the NHS in devolved nations.
You will be interested to learn about an early day motion at Westminster on chronic pain. So far 14 MPs from across the UK have signed up – the more that sign up, the more coverage the EDM is likely to get and the more MPs are likely to have Chronic Pain raised to the forefront of their minds.
Some of the points raised by the EDM are that the 20 per cent, or 1 in 5, of the European population has chronic pain and that 1 in 20 of our population live with severe pain with a quarter of these in severe, intense and highly disabling chronic pain. It explains that there are an estimated 4.6 million GP appointments per year for chronic pain in the UK costing £69 million, which equates to 793 full-time GPs because chronic pain sufferers attend their GP five times more frequently than those without.
It notes that the overall quality of life in the presence of chronic pain is shown to very low and all dimensions of health, including physical, psychological and social are shown to be severely reduced with a 10 year mortality, higher among those with severe chronic pain, particularly death from heart of respiratory disease which is twice the rate of those without severe chronic pain.
Click here for the page showing the full text of this EDM http://www.parliament.uk/edm/2016-17/195
And to send an email to your MP, click here http://www.parliament.uk/mps-lords-and-offices/mps/ and ask them to sign up to “Early day motion 195”
- Join the #DesignforMSK project for young people
- Tim Daniel will sky-dive for FMA UK
- Gig in Glasgow for FMA UK, 30 June
- Zoe's Andreson Scottish 10K challenge for her Mum and FMA UK
- Katie Love will run 100K for FMA UK and for her auntie
- Anna Baines and James Sanderson run the Great Manchester Run for FMA UK