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Life, in pain: Part 1 — Chronic fatigue syndrome

Chronic pain has long baffled doctors and often left patients feeling helpless. But a mind-body approach is helping Chicago women reclaim their lives.
Jenni Prokopy
Contributing writer

In this six-part series, Jenni Prokopy of 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.

Part 1 — Chronic fatigue syndrome

Chronic fatigue syndrome (CFS) is perhaps one of the most misunderstood — and maligned — chronic pain conditions experienced by women. For years, it was referred to dismissively as the “yuppie flu,” implying that lazy women used it as an excuse to avoid life’s responsibilities.

In fact, CFS is a debilitating condition affecting some four million people in the U.S. — most of them women. The main symptom of CFS is crushing fatigue, which leads to a vicious cycle of inactivity and reduction in stamina and strength. It’s common for women with CFS to become so de-conditioned that they are unable to work or participate in other fulfilling activities, which contributes to feelings of isolation, anxiety and depression.

But the broad range of symptoms also comes with a broad range of treatment options — making an all-encompassing approach, consistent with the Institute of Medicine’s recent recommendation, a natural fit.

Doing it all

Dr. Ketki Modi, a pain management physician at Swedish Covenant Hospital, often employs a treatment regimen that includes exercise, psycho-therapy, sleep testing, nutrition and medication.

"It’s not about just listening to how long the patient has had the pain, where the pain is and how often it occurs; I’m also listening to other psychosocial issues that may be affecting their pain and understanding how the chronic pain is limiting their life," Modi says. “My approach is mind, body, spirit. I try to address all the issues that are affecting them — their well-being in essence."

In addition to integrating various forms of treatment, many patients find relief from complementary medicine techniques. Dr. Angelique Mizera, a physical medicine and rehabilitation physician at Swedish Covenant Hospital, for example, uses energy medicine and teaches breathing exercises to help her CFS patients reduce stress.

“I use breath work to help institute deep breathing and an autonomic shift by thinking about what you appreciate; thinking about that in your head changes how you feel in your heart,” she says.

Mizera says deep breathing has been correlated with a decrease in pulse rate variability, which helps reduce the stress response in her patients — a big component of dealing with the chronic pain and fatigue of CFS.

Like Modi, Mizera performs a whole-body assessment and evaluates many aspects of her patients’ lives. In her practice, she says, “people are treated holistically; they are not treated like a disease. They are treated as a person — they are comforted, they are nurtured.”

Pacing yourself

One of the most effective treatments for CFS is activity pacing. Dr. Steven Kvaal, a clinical psychologist at Swedish Covenant Hospital who runs a psychological pain management group, teaches his patients pacing strategies.

The key, he says, “is helping people learn that they need to pause and take breaks. And the hard part is not when they start to hurt, but before they start to hurt or hurt worse.”

A common lesson: How many shirts can you iron before you hurt or are exhausted? Twelve? Then take a break after ironing eight. Then go back a do a few more, but break again before you are feeling worse. It might sound easy, but for someone who used to being highly active and is now limited, it’s tempting to work until they feel bad.

“As simple as it may sound, it’s really hard to implement,” Kvaal says, but pacing can make a huge difference in the energy level of a CFS patient.

Research: What’s on the horizon for CFS?

Four million women in the U.S. have chronic fatigue syndrome, yet research grant funding from the National Institutes of Health (NIH) in 2010 was only $6 million — that’s $1.50 per person, according to a 2011 report by the Chronic Pain Research Alliance.

Mizera says performing CFS studies can be challenging because there are multiple perpetuating factors: “It is very difficult to get a treatment group where you can control all the other perpetuating factors, and just test one.”

In 2009, researchers inspired hope in the patient community when they announced a possible link between XMRV, an infectious retrovirus, and CFS in Science magazine. But the Centers for Disease Control and Prevention has since reported a study disputing the link, inspiring a debate among members of the CFS and research communities — and leaving a possible treatment avenue still up in the air.

Meanwhile, the Hutchins Family Foundation launched The Chronic Fatigue Initiative in September 2011, pledging $10 million to support researchers at institutions like Columbia University and the Harvard School of Public Health. The NIH site also offers a list of government-funded CFS research. 

Chelsea’s Story: Life with CFS

Everything changed for Chelsea, a 49-year-old living in Wilmette, Ill., after she experienced a bout of mononucleosis — a known precursor to chronic fatigue syndrome — in 1991.

“I was in between my second and third years [of law school], and I never felt the same after that,” says Chelsea. “I was the kind of person who did anything I set my mind to — [I was] a single mom with two young boys, in law school at Northwestern.”

But after she finished law school and began working in 1995, things went downhill very quickly. She was exhausted, light-headed and woozy all the time and not sleeping very well.

“As a single mom I know what fatigue is, and this was way beyond that,” she says.

A trip to Johns Hopkins resulted in a diagnosis of neurocardiogenic orthostatic hypotension, a type of dysautonomia, which is common in those with CFS.

Treatment helped her somewhat, but her symptoms continued to worsen, and in 1997 she had to quit working. Two years later, she received an official diagnosis of CFS.

“It’s been a battle ever since. I thought I would be away for six months, and I just have never gotten better,” she says.

Chelsea says the disease is very draining: “Everyone is operating on the equivalent of a D-cell battery, and people with CFS have the equivalent of a hearing aid battery.”

She treats her symptoms mainly by pacing herself to manage the energy she does have and trying to ward off energy crashes. Treating the dysautonomia helps too, as do B-12 injections.

“The hardest thing is that it really does a number on your identity; you go from a person who can do things to a person who cannot,” she says.

CFS is so misunderstood that even well-meaning friends and family members have been dismissive, she says.

“It’s crazy because I went from being a person who had credibility … and all of a sudden you have a weird unknown illness, and people think you have no credibility, that you’re making it up, or you have a mental illness,” she says.

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

  1. Look for a group that contains a mix of people from different backgrounds, including some who are near your age; this will help you gather different perspectives and find people you can relate to.
  2. Ask your health care providers if they know of any reputable groups in your area; their recommendations are often trustworthy.
  3. Check with local hospitals to see if they host support groups near you.
  4. Be prepared to use support groups as a supplement to the other support you may receive from friends, family and your health care team — not as your only source of support and encouragement.
  5. If you join a group and realize it’s not really a good fit (it’s too far to drive, or too many people are negative), quit it! Your time is precious. You’ll be able to find another.

Support group resources

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