News of treatment for fibromyalgia
gives new hope to those afflicted
They live with depression, rashes, stiff muscles, swollen joints, irritable bowels, insomnia, headaches, vertigo, nausea, fatigue and such excruciating pain that at times they can hardly get out of bed.
They are people who suffer from fibromyalgia, a little-known debilitating muscular disease. Those afflicted with it say many physicians think their condition is imagined because they are unable to diagnose or treat it.
Luana Kalauawa, 51, of Kaneohe, said she went through 10 years of testing, eliminating diseases with similar symptoms. She said doctors skeptical about fibromyalgia thought she had lupus, but her husband, a physician, said, "It's got to be something else."
She said a Star-Bulletin story on May 23 last year about Annette Kam's experience with fibromyalgia changed her life.
A registered nurse at Kapiolani Medical Center for Women & Children, Kam had gone from one doctor to another with chronic fatigue and pain before she was diagnosed with fibromyalgia.
After trying many treatments that did not work, Kam heard of the medication guaifenesin from Miki Kaipaka, of Kauai.
California endocrinologist R. Paul St. Amand developed a protocol using guaifenesin to treat fibromyalgia, and Kaipaka had invited him to Kauai to talk about it.
CINDY ELLEN RUSSELL / CRUSSELL@STARBULLETIN.COM|
Fibromyalgia sufferers Marilou Navalta, left, Luana Kalauawa, Wendell Chong, Mayline Kaaikaula and Pat Ono, at the Hawaii Kai Retirement Community during a support meeting, are all feeling better since undergoing guaifenesin treatment.
A common ingredient in cough medicine, guaifenesin (guai) was originally a tree bark extract used in the year 1530 for rheumatism.
St. Amand believes fibromyalgia results from excess phosphate that builds up and goes into bone and muscle, causing swelling with lumps and bumps and pain.
Guaifenesin gradually reverses the process, but patients must eliminate all products with salicylates, a plant-produced chemical which blocks guaifenesin. This rules out such items such as mint toothpaste and mouthwash, aspirin, herbal medications and certain cosmetics, shampoos and shaving creams.
Kam was so thrilled with her improved health that she formed a fibromyalgia support group on Oahu called iFoG (Informed Fibromyalgics on Guaifenesin).
It has grown to more than 450 members, many of whom learned of the group and guaifenesin from the Star-Bulletin article or friends who read it, she said.
"It is just a miracle," she said, citing examples of the response she received.
CINDY ELLEN RUSSELL / CRUSSELL@STARBULLETIN.COM|
Fibromyalgia patients who undergo guaifenesin treatment need to avoid products that contain salicylate, such as toothpaste. These alternative pastes do not contain the plant byproduct.
Kalauawa said guaifenesin "made a huge difference in my life. ... Knowing what we have is the biggest help. We're not crazy as some people thought."
She and others at a recent iFoG meeting described similar experiences with crippling symptoms, frustrating efforts to find relief, and side effects from drugs.
"The doctor gave me every pill in the book," said Maylene Kaaikaula, 49, of Waipahu. "It took five years to figure out what I had."
She said she would sit and cry because she could not do things with children and grandchildren. She could not even hug them because it hurt to touch, she said.
She retired early from her job as a communications specialist because it was so painful and stressful, she said. When she heard of guai, she told her doctor that it was what she wanted and stopped all other medications.
Pat Ono, 50, of Nuuanu, said she was hospitalized in September 1999 with severe pain, unable to breathe or swallow. Doctors could not explain it and told her to see a psychiatrist, she said.
She said she was diagnosed with fibromyalgia in 2001 after a series of physical problems that were muscle-related.
She heard of the fibromyalgia support group from a friend and has been on guai since December 2001, she said. Until then, she said, "I was bed-bound, pretty much."
She still has a lot of back pain but has much more energy and a goal to be golfing next year, she said.
Marilou Navalta, 40, of Mililani, diagnosed in April 2000 with fibromyalgia, said she had always been healthy and on the go with two kids. Then she began to have tingly arms, numbness, a stiff neck, intense headaches and pain "like stabbing me with a knife."
She said she "crawled out on the floor just to get to the bathroom, it hurt so much." She had to stop driving her children to sports activities, and she took long-term disability from her job in a laboratory in May 2002.
She began using guaifenesin and is still having physical problems, she said. But she said that where she used to sleep on a recliner to ease the pain, she now can sleep on a mattress.
Wendell Chong, who retired in February after 35 years as a United Airlines flight attendant, said he had become tired and sore and had trouble walking up steps.
He initially blamed his condition on lack of sleep and jet lag but "got afraid, and in March and April every test was done on me." He was referred to different doctors until one poked 10 spots on his body and said, "I know what you've got."
When he saw the Star-Bulletin story, he said, "I was so desperate, I called every Annette Kam in the book looking for the lady who can help me with pain."
She invited him to an iFoG meeting, and he adopted the guai treatment. One of the most difficult changes, he said, is that he must wear gloves to avoid sap while working on his 3.5-acre farm in Kahaluu where he raises root ginger and apple bananas. But, he said, "I'm 100 percent (better) from what I felt."
For more information, e-mail Kam at firstname.lastname@example.org.