ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
North Terrace House,
19 North Terrace,
Hackney, SA, 5069
1300 128 339
Closed over Christmas
(reopened 1 February 2017)
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Living with Fibromyalgia: Education, research helps
Wednesday 9 October 2013
Living with Fibromyalgia: Education, research helps
The insomnia, stomaches and headaches began when Shari Ferbert was a child. Back then, few knew about fibromyalgia. Ferbert, in fact, hadn’t heard of the term until she started doing landscaping work in her Antioch back yard when she was an adult. Excrutiating pain sent her to the doctor, and in 1998, a physician said, “I bet you have fibromyalgia.”
Today, Ferbert and the members of a support group she began 13 years ago are raising funds for research. The group, called Advocates for Fibromyalgia Funding, Treatment, Education and Research, (AFFTER) meets monthly in Antioch and offers education and support for those who suffer with the disorder.
Some of AFFTER funds go to Dr. Robert Katz, rheumatologist at Rush University in Chicago, who has been researching fibromalgia to discover causes, alternative treatments and other information about the disorder.
Fibromyalgia is characterized by a widespread pain that is high on the 1 to 10 scale of threshold. It’s often accompanied by insomnia and what is called fibro-fog, problems with memory and thinking clearly, Katz said. The pain is linked to the central nervous system. The symptoms can come and go, and can be related to stress and weather factors.
Diagnosis can be difficult. Physicians rule out other serious medical problems before considering fibromyalgia. Patients will be asked if the pain is at specific pressure points and if it’s widespread. Evaluating sleep patterns, fatigue and stress levels also helps with diagnosis.
No cure, only treatments are available for the disorder, which affects between 3 million and 6 million Americans, according to the American College of Rheumatology. Medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help. Women are much more likely to suffer from fibroymyalgia than men, according to the Mayo Clinic.
The effectiveness of treatments as well as the severity of the disorder varies in patients. Ferbert said some of the women in her support group are in so much pain that they have to use a cane or a walker. Though she doesn’t need those, at times, every inch of her skin burns, she said.
“I’ve tried all the medication and the pain meds do help a lot, but I don’t like the side effects,” she said. For now, she is off medication. “My therapy is being proactive and helping other people,” said Ferbert. “Just knowing other people are working on finding progressive treament helps.”
The disorder affects her family, too, said Ferbert, who lives in Lake Forest with her husband and two college-aged children. For example, once when her husband was giving a speech at a party to his colleagues, she just could not go, she said. If she works on a project for a few hours in the morning, she may have to lay down for the rest of the day. “Sometimes I feel like I’m dragging concrete blocks,” she said.
But she said she has established a “no-whine rule” at her group meetings.
“You can vent, you can share your symptoms, but no whining. You say, OK, I have this problem, what does everybody else do to deal with it?”
Bridgette King of Round Lake Beach learned about the support group in 2007, after she was diagnosed with fibromyalgia.
“There is support there, you can say I’m feeling horrible, and family and friends can only undrstand so much,” King said. “The group is on a mission to find out what causes it. I’m so proud of that. It gives me hope.”
Because of her fibromyalgia, King can no longer work full time, and she said, even taking a shower can make her so tired she wants to go to sleep. She is raising two children with her husband.
Through the group, she said, she’s learned what not to freak out about. “Chest pain is a common symptom and you’re worried you’re having a heart attack.
”I’ve learned how to stretch backward to alleviate the pain,” she said. “Knowledge is power.”
She’s also learned that a rise in barometic pressure can increase symptoms, and when the pressure goes down, the pain will subside.
King said she tries to sleep well and eat right. She’s on a gluten-free diet and eats lots of fruits and vegetables, she said.
King, who is working with Ferbert at an Oct. 12 fundraiser at the Libertyville Civic Center, said the group has given her a purpose in life.
“I feel like God brought the two of us together,” King said.
Both Ferbert and King say Dr. Katz has been a godsend for them. He understands that those who suffer should not be called crazy, but taken seriously, and he is dedicated to learning all he can about the disorder, Ferbert said.
Katz said stigmas still exist when it comes to fibromyalgia. Familes and friends can help, he said.
“People need to understand that the intensity of the symptoms is quite severe,” Katz said. “Instead of thinking of a person as a chronic complainer, be understanding and empahthetic.”
This support group meets 10 a.m. to noon the first Saturday of the month at 884 Main St. in Antioch. This group is open to all individuals who have chronic pain conditions, particularly fibromyalgia, chronic fatigue and lupus.
There is no cost to attend and family members are welcome. Seating is limited, so reservations are recommended. To make a reservation, call 847-362-7807.
For more information, visit www.affter.org.
The above, with comments, originally appeared here.
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