Press release from Fibromyalgia Association UK

International Fibromyalgia Awareness Day May 12th 2007

Whilst Fibromyalgia Association UK welcomes the government initiative to enable more people with long term conditions and disabilities to remain in or return to work, it seems impossible to implement for those with Fibromyalgia.

The first hurdle is prompt diagnosis. Many people suffer for years with the pain and fatigue of Fibromyalgia without a diagnosis. They are often thought of as malingering and likely to be told to pull themselves together. They may struggle to cope for as long as possible. Their home and social life suffer as the effort to continue working is so great, it is all they can do to crawl upstairs to bed when they get home.

People are so relieved when their symptoms of aches and pains, fatigue, irritable bowel syndrome, lack of concentration and disturbed sleep are all put down to one condition – Fibromyalgia

But then another blow - there is no cure! Yes, there are treatments for some of the various symptoms. The government is advocating swift effective treatment to enable people to stay or go back to work. There is no evidence of this being available in the short term. There are no Fibromyalgia departments. There are no Fibromyalgia consultants. There are a few private clinics in the UK for Fibromyalgia and we know of two NHS clinics, which are limited geographically or in time. Most people have to go from one department to another for treatment for each part of their condition, with each specialist ignoring the symptoms outside his/her remit. The only person concerned with the whole is the patient and sometimes the GP, if there is one who understands Fibromyalgia. There are still medical professionals who do not believe in it as a diagnosis!

Does this sound like there is hope for treatment that is going to make working life more tolerable? In fact it does just the opposite. Having found out what is wrong and been given information, the added stress of having to fight for appropriate treatment makes symptoms worse. People with Fibromyalgia tend to be more sensitive to emotions and stress, leading to a vicious circle of more pain and a worsening of other associated symptoms.

It's no wonder that many have to give up working despite wanting desperately to continue. Studies have shown that people with Fibromyalgia tend to be those that are perfectionists and workaholics. This is a tremendous loss to the workforce as well as a personal one. Not working is a great blow to their self esteem and another detrimental step to improving their symptoms.

We are not aware of any plans to improve the range of treatment options, only drug trials where established drugs for other conditions are being tried for Fibromyalgia. The most effective treatment has been shown to be a multi-disciplined approach, rarely co-ordinated in the UK. If this were routinely available more people would be able to lead more useful lives in less pain. Or can we dare hope for pain free?

It is good news that medical professionals are seeking advice from Fibromyalgia Association UK more frequently now, but also scandalous that they should have to turn to a charity which has no government funding for medical knowledge. It is time that Fibromyalgia was taken seriously and effective treatment procedures put in place. Not a life threatening condition? Tell that to those that are suicidal because they can’t remember a time they were not in pain and feel too exhausted to carry on fighting for treatment to make them feel any better.

This all sounds very gloomy and sad but, despite all these difficulties, people with Fibromyalgia strive to keep going, helping others and seeking home-based employment so that they can work as the condition allows. With more research into the condition to find the root cause and treatments that work for everyone, there would be no stopping these people. They want to be healthy and play an important part in their community without suffering from the debilitating pain and fatigue of Fibromyalgia. In fact, most support group leaders around the country, as well as FMA UK trustees, are unpaid, volunteer, Fibromyalgia sufferers. The very people, who are labelled hypochondriacs or malingerers, are the ones offering the majority of information and support to their fellow sufferers.

For information packs please contact FMAUK by sending a large 40p sae to the address below.

Pam Stewart MBE
Chair
Fibromyalgia Association UK
PO Box 206,
Stourbridge
West Midlands
DY9 8YL
Office tel: 01384 895002
Helpline tel: 0845 3452322
Benefit helpline tel: 0845 3452343
Office Fax: 0870 7525118
Office email: fmaukoffice@aol.com
General enquiries email: fmauk@hotmail.com
website: www.fmauk.org 

For More Information Contact:

Derby Fibromyalgia Support Group
26 Cromarty Close, Sinfin, Derby, DE24 9NB
Tel: 0845 345 2319
FAX: none
Internet: derby.fibro@btinternet.com