CELEBRATION FOR FIBROMYALGIA AWARENESS WEEK – UK STYLE

by Jeanne Hambleton©

The celebration for last day of the National Fibromyalgia Awareness Week at the Y Club in Horsham, West Sussex, UK, on Saturday (September.15 2007) was voted as big success by the capacity audience who listened to a Scottish GP with fibromyalgia since her teens, a research doctor from the Brighton & Sussex Medical School diagnosed 10 years ago, the manager of a specialist FM clinic in London and several other key speakers.

The audience, mainly fibromites, keen to learn more about their invisible disability, were welcomed by chairman Malcolm Rose of the Surrey & Sussex Fibromyalgia Support Group, who hosted and arranged the Awareness Event. With tongue in cheek, Malcolm Rose gave the audience permission to get up and move around during the 3 hour presentations, recognising that stiffness from remaining seated too long, was a major problem for fibromites. The six speakers delivered their presentations with breaks for refreshments, stretching and movement.

The speakers offered help and guidance on living with fibromyalgia, an incurable syndrome for which there is no cure. As most of the audience suffered with pain, chronic fatigue, sleep disturbances and other symptoms, the speakers talked about positive outlooks, active life styles, exercise, nutrition and moving on with life.

One of the key visitors who talked to individual fibromites was Mr Daniel Austen from the London FM Clinic. A keen supporter of the work carried out by the Surrey & Sussex Fibromyalgia Group, Mr. Austen is associated with Professor John Davies, a fibromyalgia specialist, who runs FM clinics all over the country and at Guy’s Hospital in London.

Medical Dr Carla MacLaren, who drove for 8 hours from Scotland to give the presentation, had recently returned from a fibromyalgia conference in Washington, USA, with Josephine Fisher, the development officer and founder of the Surrey and Sussex FM Group.

Dr. MacLaren reminded the audience that between 2% and 3% of the world’s population suffered from fibromyalgia and although this affects mainly women, men, children and teenagers could also be diagnosed with this syndrome.

Having adopted a holistic approach to her own illness the Doctor described fibromyalgia as having “unpredictable symptoms, which have the most effect on our lives” but lifestyle management such as pacing, goals, therapies and a positive outlook, does help.

Dr. MacLaren said those most likely to be diagnosed with FM may have had an adverse lifestyle, faced trauma, be linked genetically, suffered a virus or be an A type personality – high achiever. She said there were many theories about the causes but the re-programming of the brain and it’s ability to maintain a regular natural function, was said to play a part.

She recommended fibromites form a partnership with their GP, who were as anxious as the patient to see them well. Dr. MacLaren, who also suffers from M.E. recommended patients to work with their doctors. She said at the end of the spectrum those who had fibromyalgia had pain while those with M.E. had fatigue.

Dr Alice Theadon, a researcher from the Sussex Medical School, who was diagnosed with fibromyalgia 10 years ago, spoke about sleep disturbances experienced by fibromites.

She had spent 5 years doing research into fibromyalgia and was currently researching sleep disturbance.

Research had shown that poor sleep quality is linked to higher levels of pain and fatigue in people with fibromyalgia. A recent research study had found that an approach called mindfulness could improve sleep quality for people with insomnia. Dr. Theadon said the study she is doing with Dr. Mark Cropley of the University of Surrey, was to establish if a mindfulness relaxation approach can help to improve sleep quality of life for patients with fibromyalgia.

Matt Laird, Assistant Fitness Manager and K2 Active Life Scheme Co-ordinator described how easy it was for those suffering with fibromyalgia to be referred by their GP for a simple fitness programme at a gym run by local authorities. At a reduced cost once approved, patients were given one to one tuition by a professional trainer with a monitored exercise programme and offered a subsidised membership at the end of the scheme to allow them to continue being active.

Liz Catchpole, a speaker from the NHS – West Sussex Primary Care Trust – spoke of a new ‘Looking after Me’ courses, designed to help carers, who are often overlooked by the problems of the person they care for. In West Sussex alone there were 73,000 carers, which represented a “huge army”. Efforts were being made to raise awareness and the concerns of carers – often spouses, families, children or neighbours. National research had shown carers have their own problems – mainly back care. Funding for back care courses and help with new equipments and techniques were being investigated. Liz Catchpole outlined the work of the PCT, and the success of Expert Patient programmes organised by lay people with chronic illnesses.

Mr. Nic Holc-Thompson from Inspire Ability from Havant, told the audience about his wife Kathy, disabled with fibromyalgia, and how together they had developed a successful pain management scheme, which continued beyond the initial training. This pain management model was now being considered for adoption by various local authorities throughout the country.

Denise Baldock from Brighton, the holistic nutritionist outlined her success with a patient with fibromyalgia with diet changes and balancing the energies with a nutrition plan using natural products. Sarah Rush from Contact a Family in Horsham offered help to families with children disabled by fibromyalgia. Sue Berry spoke about Connexions who helped disabled youngsters from 13 to 25 establish themselves with a career.

At the end of the afternoon, after the showing of a new DVD about fibromyalgia, called Show Me Where It Hurts, Jo Fisher from the Surrey & Sussex Group, said organising the event had been hard work but well worth it.

“The Group will now be considering another afternoon seminar at the Y Club. People who have fibromyalgia are always keen to learn about new medications, treatments and progress towards a cure. It was very gratifying to see the hall filled to capacity. The success is also due to the hard work of the Committee,” said Jo Fisher, herself a fibromyalgia sufferer, an illness that forced her to give up nursing.

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One thought on “CELEBRATION FOR FIBROMYALGIA AWARENESS WEEK – UK STYLE

  1. the icarecafe would really like your help with a discussion on Fibromyalgia

    As you many know the icarecafe has been set up to provide a space for patients, carers and their supporters online.

    Some of the members have set up a discussion group on the subject of Fibromyagia. The group has asked lots of questions which are still in the process of being answered. So we thought it appropriate if we invited people from other Fibromyalgia discussion group and blogs to ask if they wished to participate.

    To have a look at the discussions so far please have a look at

    http://www.icarecafe.com/?page_id=1107&group_id=36

    Please do feel free to join in the discussions and to post any information which might be of interest to our members.

    If you have any questions please feel free to get in touch. I’m one of the moderators of the icarecafe and I can be contacted by sending and internal email to my profile.

    Thanks very much in advance for your help!

    Best wishes

    Belinda Shale
    Moderator – the icarecafe

    http://www.icarecafe.com

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