In the midst of packing to move out of her apartment, Polly Gilreath reached for an armful of books from the top shelf of a bookcase. All at once, “a profound muscle weakness and room-spinning dizziness washed over me like a tsunami,” she recalls.

“I had no choice but to lie down.”

On another occasion the Charlotte woman was dancing at a party when her legs suddenly gave way beneath her. She collapsed into a chair and sat out the rest of the party. That night she couldn’t sleep at all.

Those events were Gilreath’s first warnings that chronic fatigue syndrome, also known as CFS, was about to take her life by storm. CFS affects more than a million Americans, most of them women between the ages of 40 and 59, according to the U.S. Centers for Disease Control. CFS also occurs in men, children and teens.

In Gilreath’s case, the initial dizziness and fatigue were soon followed by other symptoms. At her job as assistant controller for a Charlotte engraving company, she began to experience increasing cognitive problems – short-term memory loss, difficulty finding the right word, slowed thinking processes. She suspected her symptoms might be triggered by chemical fumes in the 200-year-old mill building where she worked.

“By the end of the day my tongue felt so swollen, I couldn’t form words or even get them out,” she remembers. “I began to make more and more mistakes at work, which I would catch a day or two later. It was frightening.”

In February of 2000 she saw Dr. Charles Lapp of the Hunter-Hopkins Center in Charlotte for the first time. Since 1995, he has specialized in treating chronic fatigue syndrome and fibromyalgia, a closely related disease of the muscles and connective tissues.

Lapp diagnosed Gilreath immediately. “He rattled off symptoms I thought everybody had,” she says.

Focus on symptoms
CFS has an abundance of symptoms. The most common ones are unrelenting exhaustion, muscle and joint pain, impaired memory and concentration, sore throat, tender lymph nodes in the neck or armpit, headaches and unrefreshing sleep.

Because there is no known cause, cure or universal treatment for CFS, physicians focus on treating symptoms. An individual treatment program is essential, and the patient must take an active role in the treatment.

“Treatment must be individualized because everybody’s different,” Lapp explains. “Self-care is the main focus. It can become a full-time job just to take care of yourself.”

Lapp and his associate, Dr. Laura Black, use a Stepwise approach that is tailored to the needs of each patient. Stepwise combines education with proper nutrition, low-level activity, symptom management and supportive therapies.

Activity is restricted to low level because overdoing it can bring on a severe relapse, sending a patient to bed for days, weeks, even months at a time. Lapp recommends that patients do low-intensity exercise for two to five minutes at a time, followed by five minutes of rest.

The prognosis for recovery varies from one person to another.

“We do see patients who recover enough to go back to work or school,” Lapp says. “But some people go for a lifetime with this disease.”

More than just being tired
Kim McCleary, president and chief executive of the CFIDS (chronic fatigue and immune dysfunction syndrome) Association of America, an organization dedicated to research, advocacy and education, spends much of her time educating the public about the disease. CFS has often been confused with ordinary tiredness or sleep deprivation. Some patients have been told by health-care professionals that the illness was all in their head.

“Chronic fatigue syndrome is real, it’s serious, and it’s more than just being tired,” McCleary says. “A number of symptoms can be disabling and make it very difficult for people to pursue a normal life. It affects more than a million Americans, three times as many as multiple sclerosis. And when it hits, it has a lifelong impact.”

The association has brought national attention to this disease, resulting in more money being allocated to research into causes and possible treatments. Promising areas of research include the study of genetic differences in CFS patients and the use of infrared light to diagnose the disease.

The association was instrumental in getting the Social Security Administration to recognize chronic fatigue syndrome as a disabling illness, making it easier for patients to qualify for disability benefits.

Matter of choices
For Polly Gilreath, the decision to give up her job and go on disability was a difficult one.

“I’ve always been extremely independent – I started working when I was 16,” she says. “I loved my job. There are no words to tell you what that loss was like.”

She tried to keep working, even taking a chaise lounge to the office and lying down for an hour at lunchtime. But the severity of her symptoms finally forced Gilreath to go on full-time disability in 2001. In 2003 she developed breast cancer and underwent a lumpectomy, followed by radiation.

“The radiation nearly did me in,” she says.

Gilreath contends that most people, including many doctors, don’t understand what it’s like to live with CFS.

“Picture an hourglass and imagine

that you have 20 percent of the grains of sand that a normal person has,” she explains. “That includes all your brain power and muscle strength. CFS is a disease of choice – will I take a shower or do the laundry? Fix my hair or straighten the house? There are times when I can get out and travel, but everything I do comes at a price.”

The support of family members, especially her husband, Don, daughter Stacey and 5-year-old granddaughter Kyla, helps to keep Gilreath going.

“My granddaughter is my happy pill,” she says. “But I know I’ll have a day or two in bed after she visits.”

GOOD CFIDS GIRL
A poem by Polly Gilreath

Today I will not hurry.
Today I will not worry.
Some energy I will save for my husband
And tell him that I love him.
Today I will count my blessings
instead of dwelling on what my days
are missing.
Today I vow not to overdo
focusing only on what I can do.
Today I will set limits,
and squelch my rebellious spirit,
knowing that crashing is as near
to feeling like
DYING
as one can get.

For More Information
Hunter-Hopkins Center
10344 Park Road, Suite 300
Charlotte
704-543-9692
www.drlapp.net/

The CFIDS Association of America
P.O. Box 220398
Charlotte, NC 28222-0398.
704-365-2343
www.cfids.org/

U.S. Centers for Disease
Control & Prevention
www.cdc.gov/cfs/

National Institutes of Health CFS
www.niaid.nih.gov/publications/cfs.htm

Support Group
Polly Gilreath recently started a support group for CFS and fibromyalgia sufferers in the Lake Norman area. The group meets the second Wednesday of every month from 1 to 2:30 p.m. at Huntersville United Methodist Church, 100 Ranson St. For more information, call 704-392-5064.