FMA UK, as a national charity for fibromyalgia in the UK, apart from providing help and direct support to thousands of people thorough the year, does also policy work with partner organisations and feeds back to NHS and government’s consultations to ensure that the voice of people living with fibromyalgia is always heard at the highest level and that healthcare services include the needs of fibromyalgia patients.
We are a member of Arthritis and Musculoskeletal Alliance (ARMA), an alliance of charities and professional healthcare organisations, dedicated to improve the lives of people living with musculoskeletal conditions, including fibromyalgia. Working as part of an alliance, such as ARMA, ensures that we can feedback directly to decision makers in the NHS and government and that the planning for healthcare services includes patients living with fibromyalgia.
This month, through ARMA, we have had the opportunity to feedback directly to NHS England, including to Peter Kay, the Clinical Director for Musculoskeletal conditions and to Martin McShane, the NHS England Director for Long Term Conditions and to raise points, which we think will improve the diagnosis, treatment and care for people living with fibromyalgia. We have also submitted a proposal on preventative programmes to Jeremy Hunt, the Health Secretary.
We are proud to announce a joint venture has been agreed between personal trainer Adam Foster of First Call Fitness, and FMAUK to produce a fitness DVD that will be aimed at people with fibromyalgia. This fitness DVD is near the end its production but we will let you know when it becomes available with preorders available from here: http://www.thefibroguy.com/shop/pre-order-the-invisible-monster/. It will feature people with fibromyalgia and positive techniques that have been used by members of a support group. There will also be a documentary DVD focusing on fibromyalgia.
Graded activity or exercise has been shown to be beneficial to people with fibromyalgia but often the existing fitness exercises provided by others are at too high an activity rate or for too long a time that people with fibromyalgia often feel worse rather than better. A tailored program of activities that has been developed with fibromyalgia in mind is something that FMA UK has been keen to see developed for a while.
While it is still early in the project we are confident that the end product will meet a need and help people with fibromyalgia keep their activity levels up. Adam Foster has a good plan of how he will engage with people with fibromyalgia and record the positive results that he has already seen.
FMA UK has provided the investment to allow this project to come to fruition and we are hopeful that it will be successful both as a commercial venture but more importantly as an added tool for people suffering from fibromyalgia to make positive change in their quality of life.
HealthUnlocked Online Community Volunteer Admin role description
About Our HealthUnlocked online community
Health Unlocked is an FMA UK online Community provided by HealthUnlocked, 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. These 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.
Fibromyalgia Action UK (FMA UK) has a pleasure to announce that Pam Stewart, Trustee and a former long-standing Chair of the charity has received an international Distinguished Services Award from the Bone and Joint Decade, a Global Alliance for Musculoskeletal Health. This is an international Alliance of organisations working in the musculoskeletal conditions field.
Pam received the Award ‘’for promotion of the goals of the Bone and Joint Decade and in recognition of distinguished professional excellence and service to colleagues and people affected by musculoskeletal disorders.’’ Everyone at FMA UK would like to congratulate Pam as she wholeheartedly deserves the award for her outstanding contribution, commitment and achievements in raising awareness about fibromyalgia nationally and internationally and for her advocacy work in this field.
Have you ever dreamed about doing something unforgettable but have always found difficult to find the time and the opportunity to do so? Why not signing up for the once in a lifetime tandem Santa skydive while raising funds for FMA UK? This memorable and extraordinary experience is proven both to challenge the sky-diver and to raise excellent amount of awareness and funding for a charity.
FMA UK Santa Skydive takes place on the 5th December at 12 noon in Dunkeswell, near Honiton in the picturesque East Devon. Every year more and more people sky dive for FMA UK and bring exceptional memories from the experience. A tandem is an easy and enjoyable way to experience the thrills of skydiving without having to learn how. The exhilarating freefall combined with the peace and tranquillity of the parachute ride, makes tandem skydiving a unique and eye-opening way to raise money for a worthy cause.
I am raising money for Fibromyalgia as I am in the process of being diagnosed with this horrible illness. Fibromyalgia can be similar to Multiple Sclerosis, Lyme disease, Lupus and rheumatoid arthritis. Often, fibromyalgia will run alongside these debilitating illnesses making It very hard to diagnose. As it stands I am not fully aware of the extent of what I have but none the less I feel the need to raise awareness for fibromyalgia.
Fibro can vary. Some can be wheelchair bound; others feel constant pain in their bodies, like fire running through the veins and nerves. Constant headaches, nerve twitching and tremors only scratch the surface with what this illness does. There is no cure to date. Medications help control the pain, but, there is always pain and a lot of it. A fibro sufferer is ill and so tired every single day, insomnia keeps us up at night. Loneliness and sadness is often with us as people find us hard to relate to. We may constantly speak about our pain, struggles and confusion. Trying to reach for a little bit of normality, but, this is a struggle to us.
I want to raise awareness so friends and families will understand more our struggles.
FMA UK and FMSupport South East Essex teamed up with all Thurrock libraries to take part in the national Fibromyalgia Awareness Week last month. A joint information stall was held in Grays library and information leaflets about fibromyalgia and about support services available from FMA UK are available from all Thurrock libraries.
Ella Vine, Executive Officer at Fibromyalgia Action UK said: ‘’The event was a success. It has been widely promoted in the local media and as a result many people came to see us. For those who were unable to come to talk to us at the library, we made leaflets available in all Thurrock’s libraries. We would like to thank Thurrock Libraries for supporting the Awareness Week’’.
- Rebecca's modelling to raise awareness about fibromyalgia
- Article in the Guardian: ''I am in constant pain''.
- Katie's hair cut to raise funds and awareness about fibro
- Sally's Thames Bridges 20 km walk
- An inspirational story about friendship and support
- Abbeymill Fitness Club doing Loch Ness Festival of Running