"It was like a left hook from nowhere," Dal Ferbert said. Doctors couldn't find anything wrong with the mother of two from Lake Forest, yet she had unrelenting pain in her back, neck and shoulder.
"He said, 'You can't see migraines, but they exist.' That was eye-opening for me," said Ferbert, 56, a vice president and general manager at Littelfuse Inc. He started going along on his wife's doctor visits so he could better understand how she feels.
According to a recent study, marriages can suffer when one spouse has fibromyalgia, a chronic condition marked by widespread body pain, tight muscles and poor sleep.
An estimated 3 million to 6 million Americans suffer from the condition, whose symptoms also include fatigue, depression, chronic headaches, joint pain, and cognitive and memory problems. Because medical tests can't find anything wrong, people are sometimes told it's all in their head.
In recent years, however, fibromyalgia has been gaining acceptance among the medical community and the public.
"People with fibromyalgia look OK but don't feel OK," said Dr. Robert Katz, rheumatologist at Rush University Medical Center. "That must be frustrating because you can't read your spouse. Some spouses are generous and understanding and some are skeptical about the whole thing. "
Katz said patients should bring their spouses to doctor visits.
"Fibromyalgia puts a lot of pressure on spouses," said Katz. "It's helpful to bring the spouse to doctor's appointments. If you explain to them this is the intensity of their partner's pain, this is how weather and stress affects how they feel, most of the time they try to help."
The recent study by researchers at the University of Missouri at Columbia looked at 37 married couples in which one spouse had been diagnosed with fibromyalgia. Both spouses recorded diary entries about their marital interactions and personal feelings, said Christine Proulx, assistant professor of human development and family studies in the university's College of Human Environmental Sciences.
The study suggests there is a strong link between fibromyalgia, feelings of depression and fatigue. Proulx found that people with fibromyalgia were almost three times more depressed than their spouses and reported more anger and problems in the marriage, indicating that they were more likely to consider divorce than their spouses. The healthy spouses reported that it was difficult to watch their spouses experience pain.
Proulx said that in other research the gap was narrower.
"There's so much misunderstanding about the condition," said Proulx. "Therapists should consider the health histories of patients. Fibromyalgia is almost another member of the marriage and needs to be incorporated into treatment plans. It's also important to include the spouse in treatment decisions and to educate them on medication and its side effects."
Shari Ferbert said that sometimes "spouses might just think we're being lazy" or wonder why they can't contribute financially.
"I wouldn't be reliable enough to go back to work," said Ferbert, who previously worked as an office manager.
In 1999, Shari Ferbert started Advocates for Fibromyalgia Funding, Treatment, Education and Research, or AFFTER (affter.org). The nonprofit helps fund research and education toward a cure for fibromyalgia.