- Fibro Action and FMA UK are now Fibromyalgia Action UK
- What are you doing for awareness week
What are you doing for awareness week
Awareness week is the 4th September to the 11th. Let us know what you are doing.Andrea's inspirational story
Andrea shares with us her inspirational journey from getting diagnosed with fibromyalgia to conquering the symptoms and living life to the full: ‘’We need more positivity surrounding this condition. I've found that there is lots of negativity and I found it hard to find sources that will help me to cope in a positive way.
I've come so far from being stuck in the bed and only being able to go to work to now working full time again and going regularly to the gym. I walk to and from work, I can even play with my dog again and I now I even do a bit of modelling as a 1940-50s model.
It will be at least next year that I will be ready for the tough mudder and my personal trainer will actually be joining me. He has done a tough mudder before and is very willing to help raise money and awareness with me. I encouraged in total 5 people who will be running with me. Even my dad has agreed to do it and one of the wonderful ladies I work with has also agreed to just trying to rope my twin sister into running it. The tough mudder will take place in May 2017 in the Midlands, but here is lots of preparation I need to do from now on!
When the fatigue sets in when I am in the gym people are very surprised. Then I explain I have a chronic pain condition and people look shocked how well am able to cope. My colleagues I work with say it is so amazing how I cope with my fibro as I also look after my mum who has fibro and other conditions as well and has had to retire when she was only 50.
Fibro is an awful condition and it’s life changing but I believe that it cannot control our lives; we just have to get into the zone and find what works for us.
I'm trying to live life to the fullest again. It's a slow process but I fight fibro everyday and I kick its butt with every workout.
Mother's and daughter's quest to help fibromyalgia sufferers
Jayne Hammond will sky dive to support FMA UK work because her daughter, Hayley Hammond, lives with fibromyalgia. Hayley told us: ‘’I am raising funds for FMA UK through a number of events, including a Raffle and Bake Sale. This is leading up to a charity skydive which is being done by my AMAZING mother Jayne (and at almost 60 years of age!!).
I was diagnosed with Fibromyalgia in 2014, after having symptoms since 2009. We want to help raise awareness for this condition as few people know what it is and the effect is has on people who have it. Hoping this leads to better understanding and better treatment of people with the condition.’’
To donate to Hayley’s and Jayne’s JustGiving page visit:
Craig's Arnold Great North Run for his Mum and for FMA UK
The Great North Run is Britain’s biggest half-marathon and Craig finished it with great results. Here, he shares with us the details: ‘’ Well, it hurt a lot and it took me places that I have physically never been before but I completed the Great North Run in 3 hours 25 minutes and 12 seconds! My JustGiving page raised £257 and I have yet to count my collection tins but they're both pretty full! I shall give you a total amount when I've counted but I'm guessing close to the £300 mark!’’
We would like to say well done and a big thank you to Craig.
Craig run for his mother: ‘’My mother suffers badly with Fibromyalgia so I thought this would be a great charity to help raise money for and complete what is a very personal and significant challenge for myself.
Concert for FMA UK in Romford, Essex on Saturday 25 September
On Sunday 25th September a charity concert in Romford in aid of Fibromyalgia Action UK will take place. The concert is organised by local residents who are affected by the incurable widespread pain condition, fibromyalgia. The concert will feature Essex stars, Melanie Masson, the X Factor contender, Jordan Gray from the Voice, Johnny Mack from Loose Lads Essex, Shanna Taylor Ex-Towie, Gary Coughlan Essex S-Factor winner and The Haverettes.
The concert will take place in the R.U.S.S.C. Club 28 Mawney Road, RM7 7HB, Romford. Doors will be open from 7 am. Tickets £10 can be purchased by calling 01708762743 or 07901229271.
Closure of Benefits Helpline
We are sorry but the Benefits Helpline will be closed from 12th Sept until 10am on 17th October.
If you have any urgent problems during this time please go to your Citizen's Advice.
If you need to find what means tested benefits you may be able to get please go to the Benefits Calculator on Turn2us.org.uk
The Benefits and Work guides for PIP and ESA can still be requested by email from our website.
I See You - debut single aims to get fibromyalgia into the charts
I See You is the debut single by Dayton Grey. The song and video were inspired by Dayton’s relationship with his partner Nicki, who has fibromyalgia – and both feature in the video. The single is released on 16th September with a launch party in Wednesbury that night. If you are in the area – why not pop along and support the event. Dayton has 250 signed CD copies for sale, and £1.00 from each CD will go to FMA UK. Click HERE to watch the video (please note telephone number at end should read 0300 999 3333). For enquiries about pre-ordering the single Dayton can be contacted on This email address is being protected from spambots. You need JavaScript enabled to view it.
Many thanks to Dayton & Nicki for sharing their story with us, and for promoting fibromyalgia awareness through the single.
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Highlights
FMA on Facebook
- National Helpline 0844 887 2444 (10am - 4pm Mon - Fri)
- Benefits Helpline 0844 887 2450 (10am - 12pm Mon, Wed, and Fri)
- Complimentary information booklets for doctors and other professionals (fully referenced)
- Books and videos
- Website Contacts with legal specialists
- Conferences
- Local support group and helpline contacts
Trustee meetings are held monthly via Skype and last about 2 hours. There is an annual meeting that coincides with our group leaders’ meeting over a weekend.
If your Medical Professional needs some education in fibromyalgia you can request that an FMA UK Medical Professionals Pack is sent out to them. All we need is the name of the Medical Professional and the address of their practice. We will then send a pack to their surgery addressed from us to them.
You can request a medical pack using this form.
We are delighted to announce that our recent assessment for The Information Standard has been successful and we continue to fulfil the criteria for using the TIS logo on our publications.
The rigorous process that has to be in place ensures that up to date evidence is used and presented to people in an appropriate way. The process is ongoing and requires much diligence by everyone involved.
We would like to thank everyone who has worked on our publications or sent in their comments and suggestions for improvement
FMA UK is now able to receive text donations from your mobile. With our partners you are now able to send a text from your mobile to 70070 with the code of FMUK01 and your amount that you would like to donate to us. For example if you would like to donate £5 to FMA UK* you would text FMUK01 £5 to 70070. You would then be given the opportunity to add Gift Aid - meaning FMA UK benefits from an extra 25% on top of your original donation.
You can find a Support Group near you by contacting the Regional Coordinator for your area. If there does not happen to be a support group near you then maybe you can join with some other members and set one up. Support groups provide a social benefit as well as the opportunity to share tips on coping with fibro. They come in all shapes and sizes and we are often told how they have helped people.
