Support for CFS/ME/Fibromyalgia sufferers on Fraser Coast
FRASER Coast CFS/ME/Fibromyalgia support group started in November 2012 and co-ordinator Judy Vickers said she first started the informal get-together for those in Maryborough who could not travel to the Bay.
Thirteen years ago, Judy was diagnosed with Fibromyalgia and CFS (Myalgic Encephalomyelitis).
Fibromyalgia Syndrome is a chronic condition that causes widespread musculoskeletal pain, fatigue and mind fog for which the cause is still unknown.
The chronic pain, chronic fatigue and sleep disturbance is often accompanied by depression.
"The support group has been invaluable to me because of the sharing of information, leading to me getting help from a doctor at Maleny for a previously undiagnosed condition. I've also made wonderful friendships," Judy said.
"We gain comfort from each other, as we all know just how debilitating these syndromes are.
"The group also includes sufferers of lupus, multiple chemical sensitivity, lyme disease, and MS."
Diagnosed with ME/Fibromyalgia and ciguatera poisoning in 1990, Joy Daniel said she was most fortunate to have an early diagnosis from Brisbane neurologist Dr John Bradfield.
"He was seeing patients with symptoms exactly like mine," she said.
"All these people were, in his words, high achievers who had identical symptoms - crushing fatigue, severe muscle pain, or were too weak to walk a short distance, but they showed no clinical depression," Joy said.
"Slow cognitive and motor speed appeared to be a basic underpinning of cognitive difficulties in ME/CFS.
"My ciguatera was diagnosed by Professor John Pearn at the University of Queensland.
"Unfortunately there was no known treatment for either disease apart from avoidance of certain foods, probiotics for the gut, magnesium sulphate injections and night sedation."
Community and Allied Health Wide Bay Hospital and Health Service South assistant director Ben Ross-Edwards presented an information session at the support group meeting last month.
Ben said that while hospital admissions for chronic diseases have been increasing in hospitals around Queensland there is a range of health programs across public and private sectors available for patients
"Wide Bay HHS (South) started a chronic disease program in July this year to treat patients in the acute phase of their disease, prevent hospitalisation and empower them to independently manage within the community," he said.
"We have a range of allied health and nursing services who work across the Fraser Coast providing individualised treatment."
As your first point of call to find out what is available to you, Ben said that Community Access Point could ascertain your support needs, eligibility and provide referrals for HACC services.
Phone them on 1800 600 300.