In this six-part series, Jenni Prokopy of ChronicBabe.com joins Well Community in examining the six most common chronic pain conditions affecting women — chronic fatigue syndrome, endometriosis, fibromyalgia, vulvodynia, TMJ dysfunction and interstitial cystitis.
To read the introduction to the series and a personal perspective from the series author, click here.
Imagine for a moment that you’ve come down with the flu: Your body is stiff and sore all over, your head aches, you feel exhausted, and nothing seems doable — even a couple flights of stairs are a challenge. For millions of women, this is what it’s like to live with fibromyalgia every day.
For decades, fibromyalgia was dismissed by many in health care as a “wastebasket” disease, something doctors diagnosed when they couldn’t pinpoint the cause of pain and fatigue. We now know that fibromyalgia is a real chronic condition, characterized by persistent pain throughout the body, specific tender points of increased pain, and fatigue. It impacts an estimated six million people in the U.S. — and nine of 10 are female.
Developing a definitive treatment protocol has proven elusive, but physicians are finding a multifaceted approach, including complementary techniques such as yoga, massage and biofeedback, can be especially helpful for these patients.
Why is it so hard to diagnose fibromyalgia?
Dr. Bob Hozman, a rheumatologist at Swedish Covenant Hospital, says his fibromyalgia patients are often overachievers who end up misunderstood by friends and family when they suddenly get sick and lose their ability to stay active.
By the time they see Hozman, he says, patients often “have been to a lot of other doctors because they have sleep problems, concentration problems, fatigue, irritable bowel, PMS, headaches … and they are kind of frustrated and upset.”
And chances are good, he says, that they’ve seen one of the many doctors who still don’t believe fibromyalgia is a real diagnosis; he estimates as many as 50 percent fall into this category.
Why the disconnect?
“To be blunt, there is no positive test for it; it is really a clinical diagnosis,” Hozman says.
In 1990, the American College of Rheumatology (ACR) created diagnostic criteria for fibromyalgia, making the condition easier to recognize — but it is often a diagnosis of exclusion and is based largely on patient history, along with the presence of pain at 11 of 18 trigger points throughout the body.
The cause of fibromyalgia is unknown, but it is known that patients experience vastly increased sensory processing; it’s as though the volume on all their senses is turned up. Over time, as their pain becomes chronic, their body’s response to pain signals builds neural pathways that become trained to stay in pain, creating a vicious cycle that’s difficult to break.
Alternative approaches to treatment bring success
Hozman says once he confirms a patient’s fibromyalgia diagnosis, designing a treatment program requires flexibility.
“There’s no cookbook for everybody,” he says, but because fibromyalgia is such a physical disease impacting various areas of the body, patients often uniquely benefit from alternative techniques and exercise programs to build physical stamina and reduce stress, in addition to traditional treatments such as medication and physical therapy.
For example, Hozman recommends Watsu aquatic therapy at Galter LifeCenter, which is water therapy in a warmed pool that allows patients to exercise with almost no impact on their joints, as well as biofeedback therapy, which can help patients tune into their body’s signals and manage their pain moment to moment.
Dr. Ketki Modi, a physiatrist at Swedish Covenant Hospital, says aerobic conditioning is crucial to reducing pain, and she works with patients to create a graded exercise program that helps them gradually build tolerance for exercise. She also emphasizes a program of stretching and yoga — which recent research suggests can be beneficial for many with fibromyalgia.
“If people are really tight and stiff, sometimes the musculoskeletal system isn’t working properly,” Modi says. “They may feel 50 percent better once they’re more flexible.”
Modi also works with her patients on stress management techniques and recommends clinical massage to help improve blood flow throughout the body and increase relaxation.
Treating the psychological component of chronic pain
As with many chronic pain conditions, mood disorders like anxiety and depression tend to develop and exacerbate symptoms in those with fibromyalgia. Pain management support groups can help patients connect with others who are going through similar experiences and feel less isolated.
“It’s been very valuable for people to talk with one another and realize that their experience is not unusual,” says Dr. Steven Kvaal, a clinical psychologist at Swedish Covenant Hospital who runs a psychological pain management group.
For many with fibromyalgia, feeling that other people are taking their pain seriously is crucial. Kvaal helps patients work on relationships with their family and friends, as well as with their physicians, to improve mutual understanding.
Therapies such as “behavioral activation,” a progressive increase in movement to stop the deconditioning that often develops from living with chronic pain, have also proven helpful to many fibromyalgia patients, Kvaal says. Through behavioral activation, patients are encouraged to slowly increase their activities day-by-day — building stamina — because increasing their activity level in a big way all at once can cause a flare-up of symptoms.
Research: What’s on the horizon for fibromyalgia?
Six million women in the U.S. have fibromyalgia, yet research grant funding from the National Institutes of Health in 2010 was only $9 million — that’s significantly disproportionate at $1.50 per person, according to a 2011 report by the Chronic Pain Research Alliance (CPRA).
Health care providers agree more research is needed, but funding isn’t the only challenge slowing down research efforts, says Modi: “With chronic pain there are so many other factors involved it makes it hard to isolate other factors or control for those.”
Modi says she hopes future studies will examine the role of acupuncture, energy medicine, and other types of complementary therapies — and that a possible genetic predisposition will be discovered.
Hozman says he hopes “more practitioners will really believe in it, and will diagnose patients earlier. The earlier you catch a patient, the more you can help them and keep them out of a downward cycle.”
The National Fibromyalgia & Chronic Pain Association (NFMCPA) keeps a partial list of current fibromyalgia-related research projects in the works. The NIH ClinicalTrials.gov site offers a more comprehensive approach.
Megan’s story: Life with fibromyalgia
Megan, 27, has always been very athletic and is used to being beat up on the field now and again — she even played hockey in a men’s league.
But nothing compares to the pain she has felt every day since fibromyalgia took over about two years ago.
“One day, I couldn’t function anymore. One day I couldn’t lift my arms over my head,” she said. “It’s kind of a shock. I cannot do what I used to do. My life’s changed completely; it’s been overtaken by fibromyalgia.”
Like many women with fibromyalgia, Megan’s senses are in overdrive, making her work at a child-focused non-profit extremely difficult; the overwhelming sensations from loud sounds, bright classroom lighting, and constant touch from the preschoolers are intense.
“I’ve never experienced anything like this before. It makes me jump out of my skin,” she says.
In fact, her skin sensitivity is so strong she has trouble finding clothing that doesn’t exacerbate her pain.
Megan, of DeKalb, Ill., is working with a rheumatologist and hopeful that her symptoms will improve. She feels more confident since getting a definitive diagnosis earlier this year: “Once they put a name to what you’re experiencing, I realize this isn’t all in my head, and it’s time to take care of yourself.”
Editor’s Note: The patients we interviewed for this series asked that we protect their privacy by not sharing their names. We felt it was important to share these testimonials to help shed light on the day-to-day impact these conditions have on local women.
5 tips on searching for chronic illness support groups
Support group resources
More resources online