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After more than 12 years of chronic fatigue and pain, Annette Kam said she "really got desperate." Treatment targets
fibromyalgiaSome patients who suffer chronic pain
Info & support
and fatigue swear by an asthma drugBy Helen Altonn
haltonn@starbulletin.comThe registered nurse at Kapiolani Medical Center for Women & Children went to three doctors before a rheumatologist diagnosed her condition in May 1998. She has fibromyalgia, a debilitating illness that is not widely known.
After trying all kinds of remedies, Kam said she found a treatment that works with "astounding success," and she wants others who are suffering to know "there is hope."
CINDY ELLEN RUSSELL / CRUSSELL@STARBULLETIN.COM
Kam said she would love to work full time getting the word out about the guaifenesin protocol.
The only way fibromyalgia can be diagnosed, Kam said, is by eliminating other possible causes of the symptoms: chronic pain, stiffness, excessive fatigue and tenderness of muscles, tendons and joints. All mimic other illnesses, she pointed out.
Loss of memory and cognitive abilities, called "brain fall," also may occur, she said.
Kam said she tried about 14 different things to relieve her pain, and nothing helped. "The most relief I got was acupuncture, which lasted two days. It's so painful, I wouldn't wish it on anybody, and mine is not half as bad as some in our support group."
She said two women working on doctorate degrees in the group are bedridden. "One goes back to work six or so hours on good days."
However, many fibromyalgia patients from Hawaii and mainland states meeting recently on Kauai celebrated "a miracle" because of their treatment with the medication guaifenesin.
Most had endured physical and emotional pain, loss of jobs and families who did not understand the illness, Kam said. Then they heard of Dr. R. Paul St. Amand, an endocrinologist and clinical professor in California, who made it his life's work to help fibromyalgia and chronic fatigue patients.
St. Amand, his family and nurse all had fibromyalgia, Kam said. He wrote the book "What Your Doctor May Not Tell You About Fibromyalgia."
Kam said she first heard of St. Amand from Miki Kaipaka, a Kauai resident who invited him to talk to doctors there.
"I thought it was the dumbest thing I ever heard, so I didn't go to the seminar," she said. "Being a nurse, I thought, 'How can this help the pain?' It's actually medication they give to patients for asthma, a medication to thin the mucus."
St. Amand discovered it is the best medication for fibromyalgia and has few side effects, she said.
Turning to the Internet for help, Kam said she connected with about 2,200 international fibromyalgia patients and found about 60 reviews of St. Amand's book. "All but two were positive about how it changed their lives. I got so excited."
She asked her doctor to prescribe guaifenesin. He told her it was "junk," but gave her a prescription because it is harmless, she said.
"He also gave me an antidepressant for when it didn't work," she said, noting that long ago, doctors believed the illness was a sleep disorder and often treated it with sleeping pills and antidepressants.
After five months on the guaifenesin protocol, which also involves avoiding certain products, she said she returned to her doctor and "handed him back his antidepressant. He was so shocked. At that point he put me in his Palm Pilot and started referring patients to me."
She has invited St. Amand to come here next April to talk to physicians.
Patients constantly e-mail her about the treatment. Wrote one: "I can't believe it?! Yesterday afternoon for a couple of hours, I was completely pain free!! First time in 20 years! Although the first week was hard because the pain was intense, this little glimpse of what it is like to be normal yesterday has given me encouragement to continue on."
Kam said St. Amand believes fibromyalgia involves the body's inability to get rid of phosphates, which build up and go into the bone and muscle, causing pain. The medication eliminates phosphate, she said.
But those using it must avoid any plant-based products, such as herbal shampoos, mint toothpaste or menthol cigarettes, she said.
Kam formed the Fibromyalgia Support Group on Oahu, also known as iFOG (informed Fibromyalgics on Guaifenesin), now with about 100 members, she said.
About 43 are on the guaifenesin treatment plan, she said. It may be too hard for others, and a lot of them smoke and will not try it, she said.
"It's not a get-well-overnight scheme," she said, emphasizing "it's a very slow process because one year on guaifenesin reverses six years of the disease." Some members have suffered for more than 20 years, she said.
In her case, she said, "I went from a limping nurse who couldn't pass a little old lady on the sidewalk to climbing the Great Wall of China after five months on the protocol, to competing in a national tennis tournament after one year on the protocol.
"If I could quit my job today, I'd do this full time," she said. "That's how excited I am about it. I have such passion to get the word out."
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The fibromyalgia support group meets the last Saturday of every month from 10 a.m. to noon at the Hawaii Kai Retirement Center. Information and support
For more information, Annette Kam can be reached by calling 677-8770 or e-mail: buckwun@aol.com.
