Fibromyalgia Awareness Week 3rd - 10th September 2017

How can I get involved?

Get involved on social media: 

• Add a Twibbon to your Facebook and Twitter profile pictures: http://twibbon.com/support/fight-fibro-2017
• Join our Thunderclap on Facebook, Twitter and Tumblr: http://thndr.me/PQAxdt
• Spread the word by liking, sharing and retweeting our posts and videos on Facebook (@ukfibro) and Twitter (@fmauk)
• Take a selfie and post it on social media using the hashtag #FightFibro.

We’ll be sharing them throughout the week!

• Download and request copies of our posters and leaflets about fibromyalgia: http://www.fmauk.org/posters
• Take a look at our information booklets, and share them with people who may find them useful: http://www.fmauk.org/booklets
• Send a medical pack to your general practitioner (GP) or other healthcare professionals if they need some further information about fibromyalgia: http://www.fmauk.org/GP-Request
• Fundraise for Fibromyalgia Action UK. Please visit: http://www.fmauk.org/fundraising for more information.
• Awareness Week cover images for facebook and Twitter

Read more...

Lynsey Read-Edwards's and her husband's Paul Lake District trek for FMA UK

Lynsey Read-Edwards from Norfolk together with her husband Paul will walk 14 km from Dale Head to Catbells in Lake District on 23 September for FMA UK with the aim of raising £1,000. She has already raised £760.

Lynsey told us: ‘’I wish to complete the challenge and raise awareness for Fibromyalgia Action UK because I wish to help fellow sufferers. I feel it is important to speak honestly in order to raise awareness and hopefully raise some money to donate towards a cause very close to my heart. Fibromyalgia is difficult to explain but it does effect every aspect of your life and for me it was life changing. 

It took away my Independence and isolated me from the world. The condition hit my life like a nasty flu bug. It zapped all of my energy & strength. I was not independent. I couldn't walk anywhere without support. Those early days were the hardest thing I have ever experienced. This stage of my fibromyalgia lasted for about two years. And after that every year I have been able to do more and more with the hope of one day being able to be more active and more able. 

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Demi-Louise Bailey - Miss Voluptuous UK

Demi-Louise Bailey has contacted us with her story about competing in charity pageants, and is competing in Miss Voluptuous UK in September.  She tells us: 

"I was diagnosed when I was 15 (2012)- at this time in my life I was practically immobile. I was forced out of school. I had to force and push to get this diagnosis, I had been discharged and then referred and that process was repeated and FINALLY I was told that my chronic pain, my tiredness, depression, anxiety, ibs. It was all linked.

I've been through several medication changes, my weight has fluctuated massively. Self acceptance was probably the hardest part of my diagnosis. With medication, check ups every 6 months, I am now mobile.

I will not let my disability define me, I am stronger than that.

So I started competing in 2013, when I won the title of Sheppey Princess. I then has a serious ankle injury, which led me to take a break for two years. I've then gone on to compete in charity pageants. But I came back on a national stage again in 2016 as Miss Kent Curve. I placed top 5, won congeniality and publicity award. I've then gone on to compete again and placed first runner up! Won top Top Model!

I am now competing in Miss Voluptuous UK, for my chance to be there first UK queen. This is a platform based competition and Miss Voluptuous directors pride themselves on their girls charity work. So here I am! "

GOOD LUCK ...and be sure to let us know how you get on.

Hayley Kenward & her friends raised over £1,000 by abseiling down the Spinnaker Tower

Hayley Kenward together with three friends raised over £1,000 by abseiling 100 metres down the Spinnaker Tower on the 12^th August to raise funds for FMA UK because her partner, Michelle, lives with fibromyalgia. The Emirates Spinnaker Tower is an iconic building soaring 560 foot (170 m) above Portsmouth Harbour and the Solent. It is taller than the London Eye, Blackpool Tower and Big Ben and has already established itself as a national icon for Britain.

Hayley told us after the abseil: ‘’I’m seriously overwhelmed and overjoyed by the support we’ve had and the amount we have raised’’. Hayley wrote a blog on the abseil and you can read it here:

https://www.atouchofhope.co.uk/single-post/2017/08/16/Abseiling-down-The-Spinnaker-Tower-for-2-Charities

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Donation in memory of Hilda

Sue Hanson sent us this picture of her nan, Hilda - and shared why the family donated in her memory.  Our sincere condolences are with the family and our thanks that they thought of FMA UK at this sad time.  

I recently lost my lovely Nan, Hilda. Instead of giving flowers the family asked for donations in her memory to go to charity. I was touched when I heard that they had chosen FMA UK to be the chosen charity as I her granddaughter suffer from the condition and they said they knew that this is what she would have wanted. I feel I had a special connection with my Nan and although we did not talk about my condition often she always showed a real understanding and empathy for the struggles in my life and a wish for my life to get better. I know that it would have made her very happy to know that FMA UK had received over £400 in her name and memory. It is obviously a very sad time for all of the family and I miss her more than words can say but I feel that this in a special way is my Nan continuing to give her love and support. She was always a loving and caring lady with a great sense of humour and even at 102 years old was still young at heart. I am truly thankful to have had her in my life for so many years.

EULAR Edgar Stene Prize 2018

EULAR Edgar Stene Prize 2018

The European League Against Rheumatism (EULAR) has launched the Edgar Stene Prize 2018. Every year, EULAR and EULAR’s Standing Committee of People with Arthritis/Rheumatism in Europe (PARE) offer the Edgar Stene Prize to people living with rheumatic and musculoskeletal diseases, for the best essay based on a specific topic.

I have compiled a summary of the Prize in the blog below, and attach the rules from EULAR:

https://simonstones.com/2017/07/31/edgar-stene-prize-2018/

This year’s winner was a lady from The Netherlands, who described her experience with fibromyalgia. I was also lucky enough to win the Edgar Stene Prize in 2016, and it would be great to see another UK winner in 2018! ☺ 

Simon Stones

FMA UK Trustee