By Jeanne Hambleton
The Fibromyalgia Association UK will be raising awareness in a big way on the International Fibromyalgia Awareness Day on Monday 12th May, when fibromites from all over the UK, and MPs meet for coffee at Portcullis House Westminster.
Chairman of the Trustees of FMA UK, Pam Stewart said, “Our aim is to make MPs aware of how desperate the situation is for so many fibromyalgia sufferers living in their constituencies. We need to let MPs know of the day-to-day struggles people with fibromyalgia battle against just to lead as near ‘normal’ a life. We need their help and support. Fibromyalgia sufferers deserve a voice and deserve to be listened to.
“We need to raise the profile of fibromyalgia in order to persuade decision makers to adopt these guidelines officially so that full treatment programmes can be made available to all sufferers throughout the UK.”
Recent e-petitions to the No. 10 Downing Street website have raised the question of treatments and the government responses have indicated that it is up to each Primary Care Trusts to decide priorities for their area but, without clear national guidance, fibromyalgia mostly slips to the bottom of the list if it is considered at all.
Although more doctors are becoming knowledgeable about fibromyalgia, many people who contact Fibromyalgia Association UK say that having read about the symptoms of fibromyalgia, it has been down to them to suggest the possibility of this as a diagnosis to their GP. This diagnosis stills seems to be overlooked, despite the prevalence of the condition.
Diagnosis of fibromyalgia is just the beginning of the problems. There is still the minefield of treatment options. At worst some patients are still being told, “There is nothing that can be done; there is no cure; learn to live with it. It’s psychological – all in your mind”. At best there are one or two centres that offer a range of managing and coping strategies using pain relief units, physiotherapists, counsellors, hydrotherapy and other treatments. Unfortunately most of the alternative therapies are in the private sector and sufferers are unable to finance these long term or even short term. There are also many hospitals with very good supportive departments but, unfortunately, this is a postcode lottery.
“The method of diagnosis, initially developed for research purposes, has been shown to be both effective and simple. On assessment, a careful health history is taken. If the patient reports widespread pain for more than three months together with pain in at least 11 out of 18 tender point sites when they are pressed, then a diagnosis of fibromyalgia can be made. ‘Widespread pain’ means pain above and below the waist and on both sides of the body. The ‘tender points’, or spots of extreme tenderness, are rarely noticed by the patient until they are pressed,” said the chairman.
Most people must wait for an appointment with a consultant, usually a rheumatologist, before getting a confirmed diagnosed, when it should be possible to be diagnosed by the GP.
Sufferers can spend years going backwards and forwards to their GP with what seems to be many different conditions. During this time their general health often deteriorates, employment may become difficult or impossible and family and friends can become increasingly frustrated and unsupportive. There are instances where diagnosis is made fairly quickly, within a year, but the majority can take 3 – 5 years.
Fibromyalgia is a painful, non-articular condition predominantly involving muscle; it is the most common cause of chronic, widespread musculoskeletal pain and affects between 2%-3% of the UK population. Although there is a reliable diagnosis for fibromyalgia and treatment guidelines, many people still wait years to get diagnosed only to be told there is no treatment.
The European League Against Rheumatism (EULAR) has issued the first guidelines for the treatment of fibromyalgia syndrome (FMS) and published them in the September 2007 issue of the Annals of Rheumatic Diseases. This 9 point plan covers the treatment and diagnosis of fibromyalgia. Whilst these guidelines are not yet adopted by the National Institute for Health and Clinical Excellence (NICE) in the UK, they can be seen as a significant step forward.
For more information of fibromyalgia in the UK please send a 42p sae to:
Fibromyalgia Association UK, PO Box 206, Stourbridge, West Midlands, DY9 8YL
or visit the website http://www.fmauk.org.
For further information relating to this press release please contact Jean Turner 0845 3452603 firstname.lastname@example.org