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Fibromyalgia researcher reveals secrets of a painful mystery
Sunday 10 April 2011
Fibromyalgia researcher reveals secrets of a painful mystery
With no apparent cause to explain the widespread pains of fibromyalgia patients, many doctors dismissed their complaints.
To Dr. Jon Russell, a Union College alum living in Texas who spent his career tilting against a malady many colleagues regarded like windmills, the patient suffering appeared genuine.
Russell returns to Lincoln this week to talk about progress against a pain whose signature can now be seen in telltale brain chemistry, observed on brain scans and whose symptoms can be diminished by newer medicines.
"I was in fibromyalgia before fibromyalgia was cool," said Russell, explaining how his role evolved over 20 years from correcting misdiagnoses to puzzling over cases complicated by additional medical problems.
Possibly 5,000 people in Lincoln suffer from fibromyalgia, a chronic pain condition usually accompanied by fatigue, trouble sleeping and concerns over declining thinking and memory. Women make up about seven of every 10 sufferers.
In the 1980s, the recently retired associate professor of medicine at the University of Texas Health Science Center at San Antonio admits, fibromyalgia probably was a disease of exclusion -- a label for dubiously regarded widespread pain of mysterious cause.
In 1990, experts from across North America gathered to standardize criteria and solidify a fibromyalgia definition, Russell said. That set off a ten-fold increase in scholarly articles, having given researchers confidence they were describing the same issue.
Although fibromyalgia patients complain of joint pain, he said, it turns out the malfunction lives in the brain. It's the amplification of normal nerve signals.
Russell used a metaphor of two radios: One has a volume knob that works, but the other blares even the subtlest sounds as painful screeches. What feels like a touch to most people feels like a poke to people with fibromyalgia.
Researchers found that in the brains of people with fibromyalgia, pain centers lit up if a thumbnail was pressed with relatively minor pressure. The person felt real pain.
Cerebral spinal fluid samples extracted from fibromyalgia sufferers hinted at the processes, Russell said.
Fibromyalgia sufferers typically have three times the normal level of substance P, a pain amplifier, he said. Blocking substance P reduced pain in hands, he said, but not widespread pain. Substance P was one piece of the puzzle.
Fibromyalgia sufferers also have diminished levels of two important brain signaling chemicals, serotonin and norepinephrine. Prozac, a common antidepressant, works by increasing brain serotonin.
About 40 percent of fibromyalgia patients also experience mood disorders, suggesting a connection, Russell said, but Prozac didn't ease their pain. However, two of the three medicines approved by the FDA to treat fibromyalgia act on serotonin and norepinephrine.
Blocking substance P, Russell said, also improves mood. The third FDA-approved drug appears to act on substance P.
Fibromyalgia sufferers were later found to have high levels of glutamate, the main chemical involved in experiencing pain, Russell said.
Also elevated was a chemical called nerve growth factor, which stimulates repair in brain circuitry. That begs the question, Russell said, "Repair from what?"
Brain scans have shown that people with fibromyalgia lose gray matter -- home to thought and memory -- more quickly than others.
Sufferers of other types of chronic pain experience similar losses in gray matter, he said. The connection between pain and nerve death isn't clear.
That and other big mysteries remain, but Russell asserts there have been huge advances both in understanding the condition and treatment.
Analgesics like aspirin, Tylenol and opioids weren't helpful, he said.
More hints to the disease can be gleaned from the way FDA-approved fibromyalgia drugs work, he said. Two of them fall in the same class, or work in the same way.
One class blocks signals moving from the body to the brain, he said. The other does the reverse.
Each class provides relief to about half of fibromyalgia sufferers, Russell said. When combined, they extend relief to about 80 percent.
"It's probably a clue," he said.
There may be subgroups of fibromyalgia.
Earlier this year, researchers discovered a gene highly associated with fibromyalgia. It may predispose some people to develop the disease.
The discoveries and treatment options have helped move more doctors to consider fibromyalgia as a legitimate diagnosis, Russell said.
There are physicians who went into medicine to handle crises and prefer not to bother with chronic illnesses, he said, but there are others who are empathetic.
When he began his career, he said, fibromyalgia patients suffered an average of nine years before being properly diagnosed. The current estimate, he said, is three years -- ranging from a few months for some to many years for others.
Proper diagnosis and treatment reduce health care costs and improve patient satisfaction, he said.
A study of fibromyalgia sufferers in the United Kingdom, he said, showed a growing frequency of visits to doctors and hospital emergency rooms preceding diagnosis.
"And once the diagnosis was made," he said, "that excessive health care utilization dropped dramatically."
The above originally appeared here.
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