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 By Laura Mecham

Imagine going about daily tasks with a clothespin tightly pinched around your pinkie and no way to release it. However interesting the day’s activities may be, none seem distracting enough to loosen one’s mind from the pain throbbing at the fingertip.

Jan Chambers of Providence uses this analogy to describe the pain she endures daily. She was diagnosed with fibromyalgia, a chronic-pain illness, in November 2006. A year after her diagnosis in 2007, Chambers began the first Cache Valley fibromyalgia support group.

An active wife and mother before she contracted fibromyalgia, Chambers has struggled to cope with its debilitating effects.

“Now I can’t do most of those things I used to do,” she said. “I can do them for a few minutes, but if I do them too long, I pay the price. Holding a position for more than 20 minutes becomes very painful.”

According to the National Fibromyalgia Association, fibromyalgia is characterized by widespread musculoskeletal pain and stiffness, soft tissue tenderness, fatigue and sleep disturbances. Those suffering from the illness experience a range of symptoms varying in severity.

Most researchers agree that fibromyalgia is a central nervous system dysfunction in the soft tissues of the body. A lack or imbalance of necessary chemicals and hormones in the body, such as dopamine that soothes the brain and nerves, causes pain amplification due to abnormal sensory processing in the central nervous system.

“It feels like your body is really going bad on you all over,” Claudia Brilliant of Logan said. Brilliant has experienced the symptoms of fibromyalgia for nearly 10 years, but has not yet received a diagnosis.

It is estimated that 3 to 6 percent of the United States population has fibromyalgia according to the NFA. The majority of sufferers are women but many with the illness go undiagnosed.

Diagnosis of fibromyalgia is often lengthy because many of its symptoms mimic those found in conditions and diseases such as multiple sclerosis, rheumatoid arthritis, hypothyroid.

“It’s really hard to get anyone to diagnose it because they don’t have a test they can give you,” Brilliant said.

Presently, there is no laboratory test available for diagnosing fibromyalgia.

Thus, determining whether one has the illness is more a process of elimination to learn what one does not have, like obstructive sleep apnea and thyroid resistance.

Fibromyalgia patients also experience great pain at specific “tender points” throughout the body. A manual, tender point exam based on the standardized American College of Rheumatology criteria may determine the presence of tender points characteristic to fibromyalgia, aiding in identification of the illness.

According to the NFA, it’s estimated that it takes an average of five years for a patient to obtain an accurate diagnosis.

Root causes of fibromyalgia are also difficult to discern. However, continuing research sheds new light on understanding where the illness may stem from. According to the NFA, recent studies show that genetic factors may predispose some, however, fibromyalgia is usually triggered by an illness or injury that causes trauma to the body.

Chambers’ fibromyalgia was brought on after several surgeries and a fight with cancer, but she didn’t receive a diagnosis for more than a year.

“I had such extreme pain that I just couldn’t find a source for,” she said.

After discovering her pain was chronic, Chambers began heavily researching her illness, hoping to find means to alleviate some of her symptoms.

Her interest took her to education conferences in Salt Lake City and eventually as far as Washington, D.C., in August 2007, where she was trained by the Leaders Against Pain Coalition to lead a local support group.

Upon her return, Chambers created the Northern Utah Fibromyalgia Connection support group in Logan in October 2007.

“It is very therapeutic,” Chambers said of the group, which has nearly 25 members from throughout Cache Valley. “People say to me, ‘My friends have no idea what I’m going through. It’s nice to be in a place where people understand.’”

Chambers’ goal is to help others with fibromyalgia recognize the stressors in their lives that may be creating pain and help them discover how to change their lifestyles to live more comfortably.

“Our bodies are really sensitive and stressors can be anything from people, to odors or even something like a breeze on the back of the neck in a theater,” she said.

The group meets monthly and shares methods for relaxation, discusses new research and receives information from a variety of local health-care providers who are invited to attend.

“It’s amazing because some people have seen 10 doctors, have an unsupportive family, their spouses have divorced them, nobody believes them, and they just don’t have a good network. People need support to live through this disease,” Brilliant said, a regular member of the group.

Through her struggle with fibromyalgia and her effort to aid others, Chambers often draws a comparison between the illness and a dragon that needs to be taken into control.

“When you are at the tail end of the dragon, you cannot lead it or coerce it to respond to you, much less even recognize the difference between the head and the tail,” she said. “This is where support from spouses, family, friends and yes, a support group is very important.”

While the support of others is instrumental in living with the illness, there are also many other means by which those suffering from fibromyalgia may find some relief. Over-the-counter pain medication may subside some of the pain, but a myriad of other medications may be prescribed on a case-by-case basis.

Deep sleep is necessary for the rejuvenation of the body, but is difficult for those suffering from fibromyalgia to obtain due to muscle tension. Creating a steady, suitable sleeping environment and, if necessary, acquiring appropriate sleep aids, may allow for better, deeper sleep, and in turn, less pain.

Other alternative methods of pain alleviation are often sought as well, such as yoga, meditation, diet therapy, acupuncture and chiropractic work.

“At the conferences and in meeting people in our support group, it is inspiring to see other people with fibromyalgia still functioning, maintaining a sense of dignity and finding purpose and enjoyment,” Chambers said. “With chronic pain and illness, you completely lose your sense of self and will start to reformulate the self image.”

As Chambers has begun to uncover means to ease her pain, she has found herself becoming more grateful, seeking joy in the functional areas of her life. This sense of gratitude and joy is what she hopes to continue to bring through her support group to those suffering from fibromyalgia in Cache Valley.

“When you lose it all and then start coming back, gratitude becomes a way of life,” she said. “You’re still living your life, just differently.”

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On the net:

For information about the NUFC and the support group’s meeting times, visit their Web site at www.nufibroconn.org.