North Pole Challenge
There’s always someone willing to go that extra mile, but we don’t think this will be beaten. In April 2012 Team AWNTY (Are We Nearly There Yet) 2012. will be racing to the Magnetic North Pole.
We are delighted that we have been chosen as one of the charities they are supporting and you will see they have decided to use the duck as their mascot. They are planning many ducky events and we look forward to keeping you all up to date with these.
Thank you for your support and the fabulous opportunity to raise awareness of fibromyalgia throughout the world. The following is taken from Team Awnty website. Arctic exploration is regarded as one of the most arduous tests of physical and mental endurance in the world with temperatures plummeting as low as -50°c.
Study to discuss your views on living with pain and working life
Would you be willing to discuss your views on living with pain and working life? Researchers are looking for people living with pain to discuss how it might affect the ability to work and sickness certification. This will be at your convenience; you can be interviewed either face-to-face or over the telephone, or participate in a local focus group.
You might want to discuss experiences with your GP and employer, the new fit note, and benefits. We need to know more about how these issues are negotiated to improve the system. All data will be kept confidential and all reasonable expenses paid. If you are interested in finding out more, and are 18 or over, please contact the study co-ordinator, Elaine Heaver, at the Centre for Pain Research, University of Bath.
Walking the London Loop
Pam Stewart, chair of Fibromyalgia Association UK (FMA UK), has recently moved back to Whitton and on one of her Sunday walks noticed the London Loop symbol in Crane Park. She found the details on the website and gave herself the challenge of walking the whole of this interconnection of 150 miles of pathways on consecutive days to raise awareness of fibromyalgia.
Pam’s husband had fibromyalgia for many years and found first of all that it took years to get a diagnosis and then treatment was not very effective. Information and support were not readily available and many professionals did not even believe it existed.
Over the years the fibromyalgia community has grown, with over 150 support groups around the country. Awareness amongst professionals is much improved although understanding is still patchy. Effective treatment is still difficult to obtain.
At present there are only 2 support groups in the Greater London area and it is hoped that by raising awareness with the London Loop Walk people can be put into contact with others in their area for support and understanding.
Launch of the New Team Fibro T-Shirts
Dr Andrew Logan was our guest speaker at our June meeting.
I would like to thank Dr Andrew Logan for attending our meeting and launching our new “Team Fibro” tee shirts and giving an informal presentation on pain and fibromyalgia. We work closely and we thought it would make a change from formal presentations.
Dr Logan talked about the development of pain management services in the UK, with The Walton Centre in Liverpool playing an important role in both the introduction and its development. In the early days pain management began as an extension of the duties of the anaesthetists who focused on nerve blocks and injections. Whilst injections still play a role for some patients, pain management has moved on taking a more holistic approach, looking at the whole person and how the patient’s quality of life can be improved.
July highlights from Fibromyalgia Focus
In May I had the privilege of attending a rheumatology conference called OMERACT (Outcome Measures in Rheumatology & Arthritis Clinical Trials) designed to allow rheumatology experts to come together to discuss what outcomes they should be measuring in clinical trials and how these measurements should be made. I was invited as a patient participant and had the opportunity to learn about and offer opinions on fibromyalgia in research-related discussions.
It was an exciting opportunity, especially as it was based in Borneo, not a place I ever thought I'd visit! Take a look at page 11 to find out what I learnt about FM and current research techniques.
How are your levels of self-esteem? If you are finding that your self-esteem has plummeted recently, then take a look at page 18 where Bridie Nelson offers some Top Tips for boosting your self-esteem.
Bridie says: "One of the first things you can do when you wake up in the morning is to think about what makes you the special and unique person that you are. Now it might not be easy to come up with a long list of positives at first, but as you get used to noticing some of the nice things people say to you and about you, it will get easier.”
Subscribe to Fibromyalgia Focus to read these articles and more.
Tender points no more??
For the last 20 years the American College of Rheumatology (ACR) criteria has been the method for diagnosing people with fibromyalgia. To achieve this diagnosis, patients were required to have:
- had pain in all four quadrants of the body for at least 3 months
- patients also need to have 11 out of 18 specifically chosen tender points
These tender points are areas of the body where it was easiest to test pain sensitivity in fibromyalgia patients.
So why do we need a new diagnostic test?
Well the tender point test was often not performed by GP's or rheumatologists, and when it was it was sometimes not performed correctly. A lot more is now known about additional symptoms like cognitive dysfunction and the new criteria allows for a severity score that will help evaluation of patients with marked symptom variability.