FMA UK - UK's National charity for fibromyalgia

The Story Tellers Story ( one person’s journey with Fibromylagia)

picture of author

D T Dragon explains her individual treatment plan and her research that has lead her to this, although this is not the accepted view of most professionals.

It’s said that everyone has two stories – the story of their life and the story of how they wish their life could be. Anyone that can tell more than two stories is a writer.

“You’ll never believe how we met.”

I say the above a lot in my life. So when I saw it as a prompt by an online publisher, I knew I could draw on my experiences to create a story. A lot of my friends are writers, and have had ambitions to be published since they were children. I’m slightly embarrassed to admit, I had no such ambition! This was the first story I’ve ever written with the intent of being published, and my story was accepted immediately. I have my friends to thank for this, as they highlighted the pitfalls they had experienced in becoming published, which I skilfully avoided with their advanced knowledge. Community is a fabulous thing.

Media Request for Mums with Fibromyalgia

FMA UK have been asked to find women aged 20 - 50, who at some point were advised by their Drs or health professional not to become pregnant, but then later successfully went on to have a child, ideally within the last five years. There could be a number of reasons for this, perhaps successful drug therapy, recovery, or an operation meant becoming pregnant was now an option and they had a child.

Please contact Pam Stewart This e-mail address is being protected from spambots. You need JavaScript enabled to view it with brief details that can be passed on for the journalist to decide who to follow up. They are likely to want to include a photograph so you should be prepared for them to arrange this. This is an excellent opportunity for raising awareness in a positive way.

FMA UK at BSR 2013

BSR 2013 - Table - Check it out on facebook FMA UK is at BSR 2013 in Birmingham this week. It is a great opportunity to speak to Consultant Rheumatologists and other medical professionals that people with fibromyalgia will see during their care.

There may also be some presentations on fibromyalgia where best practices and management are discussed. FMA UK attends this every year and makes good use of the time to promote awareness of fibro and also network with medical professionals and other charities. More info can be found on our Facebook page at www.fmauk.org/ukfibro.

Yorkshire & Humberside Regional Consortium AGM

The Yorkshire & Humberside Regional Consortium held their annual AGM in Huddersfield on Saturday 13^th April.

With a fantastic show from over half of the regional groups the agena was clear on health, exercise and to show thanks to two very special people at FMA UK, Jean and Gerry Crossley who have decided to formally retire from their respective positions this year to embark on travel and taking some very much well deserved additional leisure time.

June Chivers, the new Regional Coordinator for the region, assisted by Bernie Mosley, emphasised the clear message of communication and working together to help develop awareness, fundraising and sharing information.

May is Fibro Friendship Group (Staines) 1st Year’s Anniversary

staines tshirt

This time last year Lisa and I were really nervous that we had set up a group that no one would attend. However we have both been blown away by the amount of interest and support we have received. We have up to 30 members on our books; people from all walks of life and most have never attended a support group before let alone met anyone with Fibromyalgia.

We have been amazed at the power of the internet; many members have found us via this method, even though we advertise weekly in the local papers and around our area.

We set up a web page which has had over 2000 views, a facebook page where we have over 60 likes and get viewing traffic of over 1,500 persons per week. As well as the above recently we opened a closed facebook page for our members only to keep in touch with each other in between groups, this has been a great way to be able to share ideas and thoughts without the worry of our friends and families reading our posts.

Dr Kevin White talks in London and Cheltenham

Last year at the conference in Chichester Dr Kevin White was one of the most informative and entertaining of speakers. As well as presenting at this year’s conference he has agreed to two further presentations in London and Cheltenham.

The London event takes place at the Chelsea Theatre, Worlds End, Kings Road, Chelsea, SW10 ODD on Tuesday 30th Aprilfrom 2pm to 9.30 pm. Tickets are £5 and can be obtained through Patsy Baker 0208 650 7698. Additional features include therapists and films of research on fibromyalgia.

The Cheltenham event follows on Tuesday 1^st May and is at Cheltenham Council at 1.30. Tickets for this are £10 available through Ally Reeve This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Peter Kay Clinical director for MSK

FMA UK are delighted that a clinical director has been appointed for Musculoskeletal diseases and expect this to have an impact on the treatment opportunities for all people with an MSK including fibromyalgia.

A campaign for this position has been ongoing for a number of years as the multidisciplinary treatment plan recommended had not been implemented nationally. Through ARMA and working with other organisations we hope to ensure that Peter Kay is fully aware of the problems and the possible solutions to the poor outcomes for patients with fibromyalgia along with the other MSK conditions.

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