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Support for fibromyalgia sufferers
Tuesday, 21 September 2010 11:10
Amy Hume
MOVES are being made to create a new social support group for people in the Mitchell, Whittlesea and Murrindindi Shires living with fibromyalgia.
Sonia Leibon, of Mernda, was diagnosed with the condition in 2004 when she having problems with her back and chronic pain and said the availability of social support in the district is limited.
“I don’t know of any support groups in the area and I don’t know of any one else who has fibromyalgia,” Ms Leibon said.
Ms Leibon has set out to create her own social support group for people suffering from the condition and is encouraging other fibromyalgia sufferers to come out of the woodwork.
Fibromyalgia causes widespread chronic pain, disturbed sleep, exhaustion, fatigue, “brain fog”, exercise difficulties, irritable bowel, headaches, jaw pain and multiple sensitivities. Patients often experience firm knots in their muscles, causing restricted movement and radiating pain.
Ms Leibon said the symptoms of fibromyalgia are unpredictable and most patients are frustrated by their physical limitations and inability to make plans.
She said depression also comes with the condition.
“It’s hard to find a social group that understands what you’re going through,” Ms Leibon said.
“I’ve lost friends over the years.
“They tend to drop you off their social calendars when you keep having to cancel plans or can’t go out.
“There’s only so much a person who doesn’t suffer from fibromyalgia can understand.
“People with fibromyalgia tend to isolate themselves socially, so it would be good if there was a group that could get together and talk about it as friends, in a non-clinical environment,” she said.
Ms Leibon said a social support group would assist people suffering from the condition in finding information.
“It’s frustrating that you can’t find a lot of information on it,” she said.
“A support group would assist people in finding what information is available and sharing it with others as well as sharing stories.
“The group could meet a different location each week to share the travel or decide on one central location.
“There can be outings organised, but with people who understand.”
To register your interest in becoming a part of a support group for fibromyalgia sufferers contact Sonia Leibon on 9717 5435 or 0417 328 606.
Last Updated ( Tuesday, 12 October 2010 09:18 )
