- Fibro Action and FMA UK are now Fibromyalgia Action UK
- What are you doing for awareness week
Simon Stones, a trustee of Fibromyalgia Action UK, has written a blog on fibromyalgia on Cloudy with a Chance of Pain https://cloudywithachanceofpain.com/blog/guest-blog-fibromyalgia-uk
Here is the whole text:
‘’Fibromyalgia is a chronic, long-term condition involving widespread pain, a heightened pain response, and overwhelming fatigue. The name fibromyalgia is derived from Latin: fibro for fibrous tissues such as tendons, ligaments; my for muscles; and algia for pain.
The severity, location and duration of pain varies for each person and between groups of people, but the condition is often described as feeling like diffuse aching or burning. The fatigue ranges from feeling tired to complete exhaustion. This may come and go, and people can suddenly feel drained of all energy, a bit like “pulling the plug"!
Besides pain and fatigue, fibromyalgia symptoms often include:
- Un-refreshing sleep, waking up tired and stiff
- Cognitive disturbances, including a lack of concentration, temporary memory impairment and mixing up words, also known as “brain fog".
- Clumsiness and dizziness
- Headaches, ranging from ordinary types to migraines
Please find below an announcement from Penny Mordaunt, the Minister for Disabled People, Health and Work, relevant to the Motability Scheme and Personal Independence Payment (PIP) which may be of interest to you.
You will also find a comment from Lord Sterling, Chairman and Co-founder of Motability explaining this further.
The information relates to enhancements to the PIP transitional support package available to people who are unsuccessful in their reassessment from Disability Living Allowance (DLA) to PIP.
Further details are also available, including a Q&A, on the Motability Scheme website here
The National Helpline and Benefits helpline are both closed Friday 14th and Monday 17th April 2017 for the Easter weekend
Level 3 Performing Arts students at the Doncaster College and University Centre raised over £1,560 for FMA UK by performing a dance show on 2nd and 3rd March in the Harvey Theatre in Doncaster. The dance show was called ‘Atypical Blend’ and it has been a huge success, both artistically and fundraising-wise and FMA UK team would like to congratulate all the students and the dance course Leader Marie Wroe, who coordinated the fundraising. It was one of the annual charity dance shows and it raised in total £1564.85.
Marie said: ‘’The students did a ‘smartie’ tube challenge, a bag packing day in the local B and M store and also a days of dancing and tombola along with the dance show which goes towards their final grades for their qualification, and I have to say the dance show was an epic success in which the students performed like professionals.’’
Lesley Bratty will ride a spin bike in her local gym for 8 hours to raise funds for FMA UK. Lesley told us her inspiring story: ‘’I was diagnosed with fibromyalgia just over 2 years ago, after several years searching for a diagnosis to explain all my weird and wonderful symptoms. Adjusting to the diagnosis has been tough in many ways, but finding the Fibromyalgia UK webpage, as well as various Facebook groups, has been fantastic. I’ve been able to view a wealth of information and tips on coping with the illness.
I’ve been lucky in a lot of ways, to have the support of my husband and friends, to have 20 years of yoga practise and a yoga teaching qualification under my belt to help me manage my pain, stiffness, and down days. Unfortunately, others aren’t so lucky, and I have seen how the work done by Fibromyalgia UK has helped those not as blessed as I am.
I try to do something for charity every year, and I usually raise money for a charity that has helped a friend or family member in some way, such as Marie Curie or Chest Heart and Stroke. This year my husband suggested that since I’m in a lot more pain than previous years I skip the charity event. I really didn’t want to skip doing some good, so compromised by deciding to raise money for a charity that benefits me!
I ran through a lot of ideas, trying to find something my body could cope with, and eventually decided on 8 hours on a spin bike, on 8th April at a local gym. I figured I can put the resistance as low as possible, and pedal extremely slowly if necessary to get through it. I also have an encouraging playlist setup and lots of people are planning to pop in and cheer me on.
- Georgie and Ellis will sky-dive for FMA UK
- Organise a coffee and cake morning on Friday 12th May for Fibromyalgia Awareness Day!
- Fibromyalgia interview on Radio Sheffield
- Alex Bellamy raised £340 for FMA UK by running the Colchester half-marathon
- Research Study looking for volunteers
- FMA UK is a Charity of the Month at Can You Escape?