From The Vancouver Sun
Fibromyalgics aren't known for being energetic, but there's Iris Koyko, juggling a job, the care of two elderly in-laws, regular exercise, and painting as a hobby.
Cheryl Kowalewski, another fibromyalgic, works, leads a local support group and is organizing a conference later this month.
They can do all this, they say, because of guaifenesin
, an expectorant and mucous thinner found in many cough medicines, which some doctors and researchers believe helps relieve symptoms of fibromyalgia.
Before guaifenesin, Koyko, 64, says she was tired all the time.
Koyko has been taking guaifenesin for almost two years. "The very first night I took it, it was amazing. I woke up and it was like, 'Oh my God I slept,' " Koyko says.
Kowalewski says she still gets tired, "but I'm still doing things." Before guaifenesin she couldn't get out of bed.
Kowalewski, a registered nurse, had to stop working for two years, but went back about two years ago. Last winter she went on a Mexican cruise, climbed a mountain using a rope, and descended on seven zip lines. She's still amazed.
According to Dr. Paul St. Amand, a California endocrinologist, who pioneered the use of guaifenesin for fibromyalgia, an average two months on the drug reverses one year of the disease.
Koyko, was diagnosed with fibromyalgia 25 years ago and figures she tried at least half a dozen different prescriptions, none of which worked or had terrible side-effects, before discovering guaifenesin. Fibromyalgia, also known as the "aching-all-over disease," is a syndrome or collection of symptoms that occur together, but not all patients have them. It's one of the reasons why fibromyalgia is difficult to diagnose. Patients, most of them women, often bounce from doctor to doctor who may tell them they have chronic fatigue, myofascial pain or irritable bowel syndrome, because there is no diagnostic laboratory test for fibromyalgia.
Some doctors think it's psychosomatic, or all in the patient's head. They tell these patients to get a good night's sleep, start exercising, and put them on antidepressants, Kowalewski says. The causes of fibromyalgia are unknown, but there are probably a number of factors involved.
Many people associate the development of fibromyalgia with a physically or emotionally stressful or traumatic event, such as an automobile accident. Some connect it to repetitive injuries. Others link it to an illness. People with rheumatoid arthritis and other autoimmune diseases, such as lupus, are particularly likely to develop fibromyalgia. For others, fibromyalgia seems to occur spontaneously.
Researchers are examining other causes, including problems with how the central nervous system processes pain. Some scientists speculate that a person's genes may regulate the way his or her body processes painful stimuli. According to this theory, people with fibromyalgia may have a gene or genes that cause them to react strongly to stimuli that most people would not perceive as painful.
St. Amand, 80, and a fibromyalgic himself, believes in a genetic cause and says a geneticist he works with has uncovered at least three gene mutations that appear to be connected to the syndrome. His findings have yet to be published, but information on the findings can be found on St. Amand's website, fibromyalgiatreatment.com.
"If we're right, this is a problem in phosphate metabolism," he says on the phone from his clinic, The Fibromyalgia Treatment Center, in Los Angeles.
As phosphates build up, the body stores them in the bones, and then eventually the muscles, tendons and ligaments. The excess hinders the cells' ability to produce ATP (energy) causing muscles to go into spasm.
Eventually lumps and bumps of built-up phosphate form in the muscles, St. Amand explains.
Guaifenesin helps the kidneys to excrete phosphates, thereby restoring normal cell function, boosting a fibromyalgic's energy, he adds.