“My doctor doesn’t understand my pain and won’t take me seriously,” is still a common complaint received on the United Kingdom (UK) national helpline. Despite fibromyalgia (FM) becoming a hot topic in the UK recently, universal acceptance and recognition in the public eye and medical arena remains elusive. The latest UK fibromyalgia conference held in London, with renowned experts from the UK and the US, has provided another stepping stone towards the sought after recognition for thousands of individuals with FM in the UK but there is still a long way to go.
The UK conference offered an ideal opportunity for local support groups to congregate, to share ideas and offer each other support. More than 300 delegates attended the public part of the conference, held September 11-12, 2004 at Imperial College in London. They came from as far afield as northern Scotland and Cornwall at the southwest tip of England to hear a wide variety of experts speak on the latest research topics, new treatment options and management techniques. There was a public question time, which proved to be entertaining as well as educational. American specialists Dr. Muhammad Yunus, a Professor of Medicine in the section of Rheumatology from the University of Illinois, and Dr. I. Jon Russell, an Associate Professor of Medicine at the University of Texas Health Science Centre in San Antonio, were greeted warmly as they gallantly took on additional lectures stepping in for Dr. Robert Bennett and his wife Dr. Sharon Clarke, who sadly were both unable to come at the last minute when Dr. Bennett injured his back.
The UK medical community was targeted on Friday, Sept. 10, 2004 with a more in-depth conference program aimed at the wide range of medical professionals.Delegates included physicians, hospital consultants, physiotherapists, occupational therapists, researchers and nurses. Fibromyalgia Association UK was proud to launch their new medical brochure, designed by their Medical Advisory Board, that offers concise information on the diagnosis, treatment and pathogenesis of fibromyalgia. The brochure is an ideal tool that can be passed on to colleagues at the delegates’ workplaces, disseminating the knowledge further afield.
What to do with fibromyalgia patients can still be a sticky question for doctors, confronted with a condition that does not respond to conventional treatments. A decade ago, a referral to a psychologist was the only action plan to offer, however, in recent years treatment options have expanded with some hospitals even designing specific treatment programmes.
In addition to medication, an increasingly popular treatment is to teach individuals how to self-manage their condition and successfully increase their activity levels. This tends to involve incorporating patients into hospital pain-management programmes, where they are taught the skills of pacing, goal setting and exercise management along with the strategies of cognitive behavioural therapy (CBT). Access to these types of courses can depend on local availability, which varies widely throughout the UK. Waiting lists within our National Health System can also be prohibitive, with some people having to wait up to six months for a place.
As important as explaining new treatment strategies, is explaining the biological evidence for fibromyalgia to ensure that medical professionals in the UK accept fibromyalgia as an organic syndrome and treat it accordingly. Dr. Russell went through the history of the worldwide research discoveries that have lead to the understanding we have today of the biochemical abnormalities seen in fibromyalgia. Dr. Yunus elaborated on these findings by explaining the concept of central sensitivity syndromes. He includes conditions such as chronic fatigue syndrome, irritable bowel syndrome and headaches as well as fibromyalgia under this heading. He enlarged on the biochemical changes seen in the central nervous system: the three-times higher levels of substance P, the more distinguishing fourfold increase of nerve growth factor, and the diminished levels of serotonin all leading to a hypersensitivity to pain that can affect the whole body.
UK experts Dr. Amanda Williams and Dr. Gary McCleane focused on the treatment aspects, addressing the subjects of the psychology of pain and new medication options respectively. Dr. Williams, a clinical psychologist from St. Thomas’ Hospital London, stressed the point that depression is a natural result of living everyday with chronic pain rather than the still widely held belief that fibromyalgia is the result of clinical depression. “There is no basis for the model that unresolved emotional problems cause pain,” she stated, “and no evidence that depression masquerades as pain.” She explained the importance of tackling negative thinking arising from the natural anxieties, frustrations and feelings of loss associated with chronic pain and the need to inspire individuals to play a larger role in their symptom management.
Dr. McCleane, a consultant in pain management practicing in Northern Ireland, honored in on the typical treatment options of tricyclics and opioids challenging their effectiveness at improving quality of life. “Opioids and tricyclics should only continue to be part of a patient’s treatment plan where demonstrable pain relief is apparent,” he countered. “There is simply no place for their use in the absence of benefit to the patient.” He went on to suggest alternatives, for example lidocaine, which can be used locally as a patch or intravenously with infusions over 20-30 hours offering four to eight weeks of widespread pain relief; or 5HTP (a specific serotonin channel) blockers whose pain killing effects are supported by increasing evidence.
The medical conference ended with the different medical disciplines splitting into groups and listening to talks relating to their specific areas of expertise. The nurses took part in a workshop designed by UK nurse Jane Southall, who explored the intricacies of nursing a fibromyalgia patient, while the physiotherapists discussed the issues surrounding exercise. This gave a chance for delegates to share expertise and experiences from their own fields with other colleagues. The doctors received talks on trigger point therapy to tackle myofascial pain, a common adjunct to fibromyalgia, and details of the latest research findings by Dr. Russell. One of the interesting items highlighted was a new diagnostic test for fibromyalgia involving antipolymer antibodies in the blood. It is claimed that around 50 percent of people with fibromyalgia have these antibodies and can be identified with a simple blood test. This irrefutable evidence will provide a biological marker for a subgroup of people with FM, offering solid evidence for lawsuits and benefit claims as well as a new option for treatment. This news will be welcomed all around the world.