A FACE OF FIBROMYALGIA
Lady L d Gaga’s G ’ tweet b brings attention to d disorder d known for widely distributed pain
It’s a nerve pain that’s so intense, it can make holding a can of pop impossible.
It’s fibromyalgia — a disorder of the brain and the central nervous system.
It tends to run in families, affects women more than men, and is associated with sleeplessness and traumatic stress, experts say. The National Fibromyalgia Association says that fibromyalgia affects an estimated 10 million people in the United States.
One of its defining features is widely spread pain — not just pain in the bones, joints and muscles.
Lady Gaga’s tweet on Sept. 12 announcing that she suffers from fibromyalgia and its chronic pain heightened attention to what once was deemed a women’s hysterical and made- up chronicle of woes. The Grammy winner ended up postponing the rest of her European tour world tour in September to deal with her health issues. She made a surprise appearance at Saturday night’s benefit “Deep from the Heart: One America Appeal Concert.”
Dr. Dan Clauw, an anesthesiology professor at the University of Michigan at Ann Arbor, has written the definitive research showing how to diagnose and treat fibromyalgia.
“People have a genetic predisposition to fibromyalgia; it runs pretty strongly in families,” Clauw said. “It’s also clear that many, if not most [ fibromyalgia sufferers] have been exposed to stress. Conditions can be triggered by different types of stress or trauma, such as a major car accident, amajor infection or being called to duty in a war.”
The diagnosis can now take just a few minutes during a routine physical, he said. The questionnaire for fibromyalgia was published in Clauw’s article, “Fibromyalgia: A Clinical Review” in the April 16, 2014 edition of the Journal of the American Medical Association ( JAMA).
The key treatments are education, exercise and cognitive behavioral therapy, Clauw said. Pain- relief drugs such as opioids often worsen the pain because fibromyalgia may in part be due to the body over- producing its own natural supply of opioids.
“Giving someone opioids will often make it worse — it’s like throwing kerosene on a fire,” Clauw said.
As many as six to eight classes of drugs can treat fibromyalgia, but any given one of those drugs works with only about one- third of fibromyalgia sufferers, he said. Yet Clauw is hopeful that continued research will result in greater numbers and more effective medications in the future.
For now, the hard work of “tricking the brain” and doing physical therapy exercises have paid off for Sandra Tipton, a retired corporate vice president and strategic consultant who spent five years seeing top specialists and enduring multiple surgeries before a rheumatolo-
“IN ADDITION TO THE GROWING PAIN, I STARTED FEELING FATIGUE THAT I COULDN’T EXPLAIN. IWAS TRYING TO FIGURE OUT IF ITWAS JUST A FUNCTION OF AGING. IT TOOK TIME FOR ME TO SAY, ‘ SOMETHING IS REALLY WRONG WITH ME.’”
gist diagnosed her crippling pain.
Tipton, 67, of Westmont, first noticed a butterfly rash on her face and, after researching it, figured she had lupus. Two of Tipton’s sisters suffer from lupus. A doctor treated her for eczema instead.
Five years later, during Christmas 2005, Tipton said a severe shooting, burning pain in her left leg knocked her down.
“I collapsed,” she said. “For the next 10 hours, I dragged myself to a phone.”
She spent two weeks in a hospital, enduring eight MRIs, a multitude of X- rays and seven CAT scans. Doctors released her because they could find nothing wrong. By that time, Tipton’s facial rash had started burning and she couldn’t sleep.
Just before the collapse, Tipton was driving 60 miles each way to and from work every day, traveling frequently nationwide, and holding down a brutal work schedule. She led strategic designs for pension, medical and benefit plans and policies, particularly for overseeing high- level mergers and acquisitions. Prior to that, Tipton spent 15 years designing and developing compensation and benefits plans, human resources policies and recruitment programs for companies in the banking, technology, manufacturing, research and development and other industries.
Tipton, with her brother Ted by her side every step of theway, traveled to the Mayo Clinic and other specialty care centers to no avail. Since her pain was burning and moving throughout her body, specialists convinced her to undergo lumbar and cervical spine surgeries, followed by a double surgery —— one to remove her thyroid and the other to replace crushed cervical discs. After three years of continuing to experience extreme nerve pain, Tipton finally got her answer in November 2009 when a rheumatologist diagnosed her with fibromyalgia, linked with her own initial self- diagnosis of lupus.
Tipton credits her brother’s support, keeping a journal and her faith in God with giving her the strength to keep going. “We got to a point where the doctors said, ‘ We really don’t know what’s happening to you.’ That’s scary.”
Ann Deuel, who has worked with child welfare agencies for 30 years and previously ran her own agency, started feeling pain in her arms and upper back.
“It hurt to lift a can of pop,” said Deuel, a director of programs at One Hope United, a not- for- profit child welfare agency that helps children in the Illinois Department of Children and Family Services’ care and young people who are being released from jail transition to independent living. She also serves as board chair at St. Joseph’s Services, which serves children, families and immigrants and hosts anti- violence, after- school and adult educational programming in the Austin and Humboldt Park neighborhoods.
The pain eventually left Deuel feeling as though a knife was sticking through her right scapula and feeling pain when she touched her skin, breathed too deeply or turned over in bed.
Deuel, of Arlington Heights, said a friend who had been diagnosed in 1995 with fibromyalgia after a car accident told her about it — but noted that, at that time, no one believed it was a disease. Twenty years ago, experts thought the complaints were due to women acting histrionically and exaggerating their symptoms to get attention.
So Deuel continued to work through her increasing pain. After all, the 60- yearold Gurnee native, who grew up with five brothers and four boy cousins next door on a 30- acre farm, prided herself on working 12- to 16- hour days and answering emergency child- welfare calls in the wee hours of the morning.
“I’ve always had a strong work ethic,” she said. “In addition to the growing pain, I started feeling fatigue that I couldn’t explain. I was trying to figure out if it was just a function of aging. It took time for me to say, ‘ Something is really wrong with me.’”
It took Deuel five years to get her answer from a rheumatologist, who prescribed medication that works for her pain.
“Fatigue is my toughest challenge,” she said, “but I have the support of my work to adjust my schedule when needed.”
Deuel is grateful that fibromyalgia, although chronic and annoying, doesn’t entail any organ- threatening or life- threatening maladies like cancer, lupus or rheumatoid arthritis. She finds relief in doing Tai Chi, though she admits she’d rather read than exercise. “I said, ‘ No, not exercise. God really has a sense of humor,’” she said.
She has also learned to say no.
“I need to take care of myself,” Deuel said. “I think that women sometimes have a hard time with that.”
Tipton has found relief by working with Marianjoy Rehabilitation Hospital physical therapist Lisa Schwarz, who has taught Tipton to “trick” her brain by looking into a mirror and “telling” herself that her painful hand is actually the opposite, mirror image hand that doesn’t hurt.
Tipton also does exercises similar to the childhood game of “pat- a- cake, pat- acake, baker’s man” and kicking out one leg at a time for nerve health. “It’s an ongoing process,” she said, noting that it’s hard work and requires vigilance to follow a chronic- pain therapist’s instructions.
Schwarz says she leads fibromyalgia sufferers through gentle exercises that follow the direction of the nerves to improve range of motion and circulation around the nerves ( neuro dynamic mobilization). Other exercises strengthen muscles, especially those in the core, hips and shoulder blades. Aerobic exercise with moderate intensity can also help, she said, and physical therapy can significantly help alter the pain.
Sleep improvement is another goal, she said. People suffering from fibromyalgia are encouraged to limit napping during the day, use towels and pillows to find comfortable sleep positions and limiting the amount of time looking at electronic devices shortly before going to bed.
Another coping mechanism is being part of a community, Schwarz said. Marianjoy Rehabilitation Hospital hosts a support group the first Thursday of each month.
“Having that network of understanding and support seems crucial to their recovery and well- being,” Schwarz said.
ANN DEUEL, fibromyalgia sufferer, director at a not- for- profit child- welfare agency