Me and the Race for Fibromyalgia.
‘’Most people would think I’m completely off my rocker for embarking on probably the hardest physical challenge I’ve ever done, Running 100k, that’s 60 miles over the south downs over 2 days this coming August - what a way to spend the bank holiday weekend!
The challenge came about after 3 of my running buddies mentioned it and me being me was totally up for it having only ever done 22 miles max and only started running seriously a year ago, 100k (60miles) seemed the way forward (I clearly have a screw loose), but I do like a challenge and this I’m sure will be the first of many. In other words I don’t like to do things by half, if you’re going to do something then do it but do it to your best. PMA and all that jazz!
Having wildly signed up for the race I felt I needed to do it for a purpose, something that is close to me in more ways than one, and one of them is Fibro. I first heard of fibromyalgia when my auntie got diagnosed over 2 years ago, after many years trying to convince people, the professionals that the way she was feeling wasn’t right, however due to the fact nothing showed up on the tests she was left to fight this condition alone. But thankfully due to Fibromyalgia awareness and the fact it is finally being understood as a proper condition, gave my auntie the diagnosis she needed and an answer for all her silent questions, which has helped her understand her condition and help her live the best life she can but also make her not feel like it’s all in her head and for people not to judge.
Personally I have also showed signs of this condition but I am currently on the mystery list.
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.
Join our campaign - write to your MP and ask to become Fibromyalgia Ambassador!
We have written to all MPs and all Members of the House of Lords to ask them to become Fibromyalgia Ambassadors. We have already received a few positive responsaes - now we need your help to get more MPs on board!
We have joined forces with UK Fibromyalgia (publishers of the Fibromyalgia Magazine) to spread the message to all our supporters to join our campaign and to write to their MPs. Please ask your MP to lobby for their support for the fibromyalgia cause. Tell them about your personal situation and how widespread fibromyalgia is within the UK, and that you are looking for their help in our campaign. We want to create Fibromyalgia Ambassadors and we would appreciate it if you would ask them to sign up to become one.
If you are unsure who your MP is then the "They work for you" website will tell you who and where they are, and it allows you to contact them directly as well. Please go to: www.theyworkforyou.com However when contacting your MP, a short, handwritten or printed letter sent through the post can be very effective. Please address your letters to:
Your MP's Name, House of Commons, London, SW1A 0AA
Take the time to write your own letter, in your own words, and edit your letter for brevity and clarity.
In Arthritis Today we read an interesting story about new research into prevention of widesprad chronic pain by using cognitive behavioural therapy (CBT). CBT has been proven effective in easing the symptoms of fibromyalgia. CBT is commonly called ''talking therapy'', which may be a bit misleading; it is a therapy designed patients to change their thoughts and outlook on life, including their condition and symptoms. CBT can be life changing. Anyone experiencing fibromyalgia and other chronic conditions can ask their GP to be reffered to CBT.
Read the full article here: http://www.arthritisresearchuk.org/news/press-releases/2016/march/can-talking-therapy-prevent-chronic-pain.aspx?utm_source=ATMarch16CBT&utm_medium=Email%20&utm_campaign=ATMar16&utm_content=CBT%20latest%20research
Simon Stones shares his story of living with arthritis, fibromyalgia and Crohn's disease from a very early age - how he didn't allow the conditions to break him, his work for patients to be heard and how he will be embarking on gaining PhD in bioscience. Simon is the winner of this year's Edgar Stene Prize, an international award for those living with musculoskeletal conditions who shared their story. Below is Simon's story. We encourage you to read it, it is both very touching and inspirational.
Simon Stones is a 22-year-old student and patient research ambassador. He lives in Bolton with his parents, both of whom have multiple rheumatic and musculoskeletal diseases. “I have lived with juvenile idiopathic arthritis (JIA), hypermobility and fibromyalgia from the age of three, and have helped to care for my mother who has systemic lupus erythematosus (SLE) and osteoarthritis. I am currently studying a bachelor’s degree in biomedical sciences, and hope to do postgraduate research into child health.
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- FMA UK work with the European Parliament and European partners
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- Volunteer vacancies: HealthUnlocked Forum Admins