- 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.Kerry Sheran from Gift that Bottle donates £1 from every item to FMA UK
Kerry Sheran does beautiful handmade gifts through crafts and innovative personalised gift bottles for every occasion: birthday, anniversary, friendship and many more. She runs a facebook shop ‘’Gift that Bootle’’ https://www.facebook.com/Craftykerz/ and donates £1 from the sale of every item to FMA UK.
Kerry tells us why she supports us: ‘’the reason I chose to do this for FMA is that I was diagnosed with fibromalgia & FND (a neurological condition) in January after I lost the feeling in my legs...although now after research mostly through FMA UK website I realise I have had this horrible condition for many years. My life has changed drastically over this year, having to give up work has been difficult for me to get to terms with. I'm extremely fatigued, spend most days in pain & don't want to go out the house..however I found a hobby making personalised items at home..I find it therapeutic.
Annie's Wigg inspiring solo inline speed skating at the Le Mans 24h Roller in France
Annie Wigg, who lives with fibromyalgia will take part in a challenging event skating race and she shares with us her inspiring story: ‘’In February 2012 I was involved in a bad crash whilst training with my team (inline speed skating) and did quite a bit of damage including: severe whiplash, widespread soft tissue damage, a torn facet joint, 2 subluxated ribs, and 1 dislocated rib which was also fractured. From this trauma I developed Fibromyalgia and Post Traumatic Stress Disorder. However I wasn't officially diagnosed with it until 2014 due to malpractice from my hospital and local doctors surgery.
I have been on skates since I was 1 1/2 years old and racing since I was 10 (2006). I started racing internationally in 2014 with the Le Mans 24hour being my first event abroad. Skating is pretty much the only thing that helps me get away from the hell of my FM. Sometimes it can bring on a serious flare-up however for the most part it actually helps me with both the pain and the mental onslaught that I deal with 24/7. I've been skating my whole life and it is now a huge part of who I am, I can't let FM take that away from me so I continue to skate as best I can. I'm not as fast as I was before the accident but I'm slowly making progress and pulling myself back.
Danielle Thornton and Shelby Ford parachute jump for fibromyalgia awareness
Danielle Thornton and Shelby Ford will do a parachute jump on 24 June to raise awareness of fibromyalgia and raise funds for FMA UK. Danielle has fibromyalgia and Shelby’s mum lives with the condition. A couple of local businesses support their fundraising efforts. Danielle told us: ‘’I have had fibromyalgia since I was 17 years old with NEADS and Chronic Fatigue.
For 17 years I enjoyed life doing horse riding, dog walking, taking part in local shows. I have also started a course in health and social and was looking forward to going to Africa to do some voluntary work. Then my life changed
I started to get pain, pins and needles, with a burning sensation in my legs. I also felt drained and unwell and just thought a virus!!! From that day I developed blackouts which I have 20 a day, pain spread across my body with spasms, chronic fatigue, occasional fits and now going through my body puffing up if I try and do too much or if I do too little. People giving me cuddle or touching me can be so painful. I have to be supervised 24/7. I am 25 years old now missed out on all those crazy things even though I try to do them sometimes.
Fibromyalgia – Doctor in the House
On the 5th June (9PM BBC1) the BBC Programme Doctor in the House will be featuring an item on Fibromyalgia. While we do not know what, the episode will be about we know that the series has a Dr Rangan Chatterjee spending time with the patient in their own home and looking at the condition from a fresh point of view.
Dr Chatterjee’s mantra is that “the majority of patients don’t need a pill, they need a lifestyle change so it will be interesting to see how fibromyalgia is covered. The BBC Website features this snippet about the upcoming programme:
“Nicola has been diagnosed with ten different conditions, including fibromyalgia, ME, sciatica and depression. Her pain and exhaustion has led her to become addicted to painkillers and almost housebound. Can Dr Chatterjee help Nicola find the cause of her problems and improve her health so that she can enjoy life with her three young sons again?”
Programme Details can be found here: http://www.bbc.co.uk/programmes/b08tlyzs
Motability – The Big Event Manchester 6th May 2017.
National & Benefits Helpline Closures
Please note the the National Helpline number will be closed on Monday 29th May 2017 and the Benefits Helpline will be closed from Friday 26th May until Friday 2nd June 2017(inclusive)
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Highlights
FMA on Facebook
- National Helpline 0300 999 3333 (10am - 4pm Mon - Fri)
- Benefits Helpline 0300 999 0055 (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.
