A NEW South East Asian survey of 506 people with fibromyalgia and 941 physicians shows that fibromyalgia is a poorly understood condition, which negatively impacts people's quality of life. Lengthy diagnosis times is a particular issue for sufferers. Patients wait 3.3 to 15.4 months and have an average of two physician visits before receiving an accurate diagnosis.
The survey also reveals people with fibromyalgia experience serious financial consequences from the condition, including an inability to work. As such, the impact on their quality of life is immeasurable.
The Pfizer-underwritten Fibromyalgia Pain Management Alliance (FPMA) collated these findings in the SE Asia FACTS (South East Asia Fibromyalgia Awareness, Concerns and Trends Survey) report, which includes a focus on the impact of fibromyalgia on the lives of Malaysian patients.
The survey includes data from 941 physicians and 506 patients from Indonesia, Malaysia, Philippines, Singapore, and Thailand. Data were collected from June through August 2009, with all interviews conducted face to face in English or in the local language.
To qualify, patients had to be diagnosed with fibromyalgia by a physician. Participating physicians, including general practitioners (GPs), rheumatologists, neurologists, pain specialists and psychiatrists, were randomly sampled and invited to participate in the survey.
In Malaysia, 102 fibromyalgia patients and 200 healthcare practitioners comprising of GPs and specialists participated in this first ever survey of its kind.
"Fibromyalgia is a debilitating and chronic pain condition that affects 2% to 5% of people, occurring more often in young to middle-aged females. It is characterised by widespread musculoskeletal pain and tenderness, with fatigue and sleep disturbances being some of the more common symptoms experienced," explained Prof Ramani Vijayan, president of the Malaysian Association for the Study of Pain, who was speaking at the press conference organised by Pfizer to announce the results of the SEAFACT Survey.
"People with fibromyalgia suffer significant disability and reduced quality of life. The SE Asia FACTS sheds much needed light on this highly misunderstood illness, as the data gathered will help GPs and specialists alike to better diagnose and manage fibromyalgia," she said.
Fibromyalgia is a common and widespread pain condition, affecting approximately 40 million people worldwide. Updated scientific data support the concept of "neuronal hyper-excitability of both pain processing and emotional areas in the brain". This explains why fibromyalgia patients are more sensitive to pain, why their pain is more severe than in other people, why pain distribution is widespread, and why patients have a very poor response to stress.
According to the survey results, at least one in five Malaysian patients reported that the overall quality of their life and ability to participate in hobbies have been very strongly or strongly impacted by fibromyalgia. Four in 10 patients (38%) admit that fibromyalgia has caused the quality of their work to deteriorate.
"The majority of GPs and specialists in Malaysia who treat fibromyalgia patients recognise that it has a strong impact on the overall quality of patients' lives," shared Dr Mary Cardosa, consultant anaesthesiologist at Selayang Hospital.
"however, three quarters of GPs and almost all specialists surveyed agree that fibromyalgia is not well understood among many physicians. Education, training, and support for physicians is key to enabling them to help manage patients with the condition" she emphasised.
The treatment and management of fibromyalgia involves a multi-faceted approach, which includes exercise, behavioural management, and approved medication. Pregabalin was the first drug approved by the US FDA for the treatment of fibromyalgia and is effective in reducing symptoms of pain, disturbed sleep, and fatigue.
The efficacy and safety of the drug has been studied in more than 10,000 patients in clinical trials, and has provided rapid and sustained improvements in pain for patients (ref: Lyseng-Williamson &. Siddiqui: Pregabalin: A Review of its use in Fibromyalgia).
"We hope that this survey has managed to show that chronic pain in fibromyalgia is an unfamiliar topic not just to patients but to the healthcare providers who treat them. It is clear that Malaysian GPs and specialists do need more experience and training in managing patients with fibromyalgia. With proper treatment and education, we believe that fibromyalgia patients will be able to enjoy a better quality of life," said Dr Vicknesh Wellupillai, Pfizer's medical director.
Even with good therapeutic compliance, patients should be taught self-management of fibromyalgia. Patient self-management leads to a meaningful improvement in symptoms and daily function. Patients should be advised to, learn about the illness and physicians should provide educational materials and inform patients about reliable sources of patient information about the condition.