Though she is not Brooks' doctor, Beg said the recent diagnosis could very well explain Brooks' chronic facial pain as well as her overall stiffness, wasting and suicidal thoughts.
Today, at 5 feet 5 inches tall, Brooks weighs just 90 pounds - 40 pounds less than in better days. She can't chew, or eat solid food, or get up or walk by herself. She needs someone with her 24 hours a day.
"I can't imagine living 20 more years like this," said Brooks, sitting in her mother's compact Winter Park, Fla., home.
"It's hard to watch someone you love be in pain and fade away," said Rager, who met Brooks in 2007. "But the way the medical system is set up, there's nothing we can do. She has to suffer every day from now until she dies."
Brooks traces the pain in her jaw back to 1999. She went to several dentists and cranio-facial experts. She tried acupuncture, pain medications, laser pain treatment and even brain surgery, during which a neurosurgeon moved some blood vessels pressing on a facial nerve.
Nothing has brought relief.
"We know that chronically ill patients who are also depressed have lower rates of compliance with their health plans, and poorer outcomes," said Dr. Julie Demetree, a psychiatrist at South Seminole Hospital, in Longwood, Fla.
Although doctors are paying more attention to the relationship between chronic pain and illness and suicide, "there's still room for improvement," she said.
Part of the solution is for doctors to listen more. "You can get a lot from a patient in a 20-minute visit without having to order tests," said Beg.
"Not every specialist is trained to treat depression, but all are trained to ask about it, and that's not done," she said.
Because Brooks is on Medicaid, the list of doctors she can see is short, and the wait for an appointment often long.
Last April a primary-care doctor referred Brooks to a rheumatologist, a doctor who specializes in arthritis. She finally got in to see him last week. He diagnosed her as having rheumatoid arthritis, but never asked about her mental health, said Michelle Brooks, who sat in on the visit.
Though Brooks still feels her situation is hopeless, Rager and her sister are hopeful that the new diagnosis and new treatment regimen, which includes steroids, will turn her around.
"If the diagnosis is correct - and today's blood tests are very accurate - and she gets proper treatment, I would expect her to get better," said Beg.
"I can't believe it's taken us so long to get here," said Rager. "If this really is the solution, think of all the suffering that could have been prevented."
By Marni Jameson
Orlando Sentinel
ORLANDO, Fla. -- Two months ago, Gary Rager's girlfriend asked him to do the unthinkable.
The 44-year-old woman, who has suffered disabling pain for the past three years, asked Rager if he would help her end her life.
"I don't want to kill her, and I don't want to go to prison. But I don't want to see her suffer anymore either," said Rager, a 59-year-old Sanford, Fla., sculptor whose work appears at area theme parks and public spaces throughout Orlando, Fla.
Such are the desperate measures that many afflicted with chronic disabling conditions - and those who love them - contemplate.
Some do more than think about it.
Like many patients in chronic pain, Karen Brooks has seen dozens of doctors over the past few years.
All take tests and discuss her physical health, but few have inquired about her mental health, said her sister, Michelle Brooks, of Maitland, Fla., who takes her sister to her doctors' appointments.
Given the high correlation between chronic illness or pain and depression - even suicide - more providers need to bring up the dark subject, health experts say.
Large-scale studies show that at least 10 percent of suicides - and possibly as many as 70 percent - are linked to chronic illness or unrelenting pain.
Authors of a 2011 British study that looked at the link concluded that patients with such conditions "should be considered a high-risk group for suicide . and much greater attention should be given to providing better . psychological support."
But doctors are often too busy focusing on physical problems to deal with the mental ones that go with them, say those specializing in chronic illness.
Brooks has been diagnosed with several medical conditions in an attempt to explain and treat the severe pain that consumes the left half of her face. Her most recent diagnosis, which she got last week, is rheumatoid arthritis.
A progressive, chronic disease that causes painful inflammation in joints throughout the body, rheumatoid arthritis is often misdiagnosed, said Dr. Shazia Beg, assistant professor of rheumatology at University of Central Florida College of Medicine.
Though she is not Brooks' doctor, Beg said the recent diagnosis could very well explain Brooks' chronic facial pain as well as her overall stiffness, wasting and suicidal thoughts.
Today, at 5 feet 5 inches tall, Brooks weighs just 90 pounds - 40 pounds less than in better days. She can't chew, or eat solid food, or get up or walk by herself. She needs someone with her 24 hours a day.
"I can't imagine living 20 more years like this," said Brooks, sitting in her mother's compact Winter Park, Fla., home.
"It's hard to watch someone you love be in pain and fade away," said Rager, who met Brooks in 2007. "But the way the medical system is set up, there's nothing we can do. She has to suffer every day from now until she dies."
Brooks traces the pain in her jaw back to 1999. She went to several dentists and cranio-facial experts. She tried acupuncture, pain medications, laser pain treatment and even brain surgery, during which a neurosurgeon moved some blood vessels pressing on a facial nerve.
Nothing has brought relief.
"We know that chronically ill patients who are also depressed have lower rates of compliance with their health plans, and poorer outcomes," said Dr. Julie Demetree, a psychiatrist at South Seminole Hospital, in Longwood, Fla.
Although doctors are paying more attention to the relationship between chronic pain and illness and suicide, "there's still room for improvement," she said.
Part of the solution is for doctors to listen more. "You can get a lot from a patient in a 20-minute visit without having to order tests," said Beg.
"Not every specialist is trained to treat depression, but all are trained to ask about it, and that's not done," she said.
Because Brooks is on Medicaid, the list of doctors she can see is short, and the wait for an appointment often long.
Last April a primary-care doctor referred Brooks to a rheumatologist, a doctor who specializes in arthritis. She finally got in to see him last week. He diagnosed her as having rheumatoid arthritis, but never asked about her mental health, said Michelle Brooks, who sat in on the visit.
Though Brooks still feels her situation is hopeless, Rager and her sister are hopeful that the new diagnosis and new treatment regimen, which includes steroids, will turn her around.
"If the diagnosis is correct - and today's blood tests are very accurate - and she gets proper treatment, I would expect her to get better," said Beg.
"I can't believe it's taken us so long to get here," said Rager. "If this really is the solution, think of all the suffering that could have been prevented."
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