Chronic Fatigue Syndrome—

‘It’s Just A Way Of Life’ Without Relief

By Kendra Bobowick

Margot Saraceno’s pain is a longtime companion as familiar to her as each purl she twists into a nearly finished afghan. Maneuvering beneath the unfurling strand of yarn to find room in her chair, Ms Saraceno glances at the fireplace and notes the photographs of her children and grandchildren. She smiles briefly until the effort falters as her grim expression reclaims her countenance.

“I am in pain 24 hours a day. I am exhausted and can’t sleep, and I’m depressed,” she said. Margot was long ago diagnosed with fibromyalgia, a condition described by some sources as interchangeable with chronic fatigue syndrome. As Chronic Fatigue Syndrome Awareness month winds down, she hopes to draw some attention, and possibly reach others in need of help, she said.

Loosely defined, fibromyalgia is a musculoskeletal pain and fatigue disorder for which the cause is still unknown. Chronic fatigue syndrome (CFS) is also described as an illness without distinct explanation. Studies detailed by the Centers for Disease Control and Prevention provide a definition that approaches clarity but remains fuzzy nonetheless. According to cdc.gov/ncidod/diseases/cfs, “CFS symptomatology is a multidimensional phenomenon overlapping with other unexplained fatiguing syndromes…”

The convoluted scientific definitions say nothing that Ms Saraceno could not have described, however.

In her experience, fibromyalgia is interchangeable with chronic fatigue, she said, “And vice versa.”

Ms Saraceno is the western Connecticut support group leader for the Connecticut Chronic Fatigue, Immune Dysfunction Syndrome and Fibromyalgia Association. She also heads a support group that meets at St Mary’s Hospital Conference Center in Waterbury every second Monday of the month from 6:30 to 8 pm.

Her support group and prayer are her primary sources of relief.

“You pray, that is good, and it’s all you can really do,” she said. “When it comes to fibromyalgia and fatigue you can’t get much help, so few doctors will treat people.”

Unrelieved by professional treatment, she summed up her years of experience saying, “Different doctors look in different directions to find what is wrong.”

Offering several explanations she has heard, Ms Saraceno said, “Some think it’s the brain and its chemistry that doesn’t click, some look at spinal fluid…” She has received neither a conclusive explanation, nor relief.

The only definitive clues to her suffering point to when the pain began. Ms Saraceno knows the exact moment the problems started, and offers her own speculations about her fatigue and fibromyalgia.

She had often traveled for work and found herself out hiking one afternoon in 1991.

“I had come home from work and had been bitten by a flea in the Adirondacks. I drove home that night and my knee was red and swollen, and the next morning I had a rash from head to toe,” she said. Ms Saraceno said she was “in so much pain I couldn’t move.” Following were five days in the hospital, “where they could not identify the problem.”

She also made a visit to the Center for Disease Control. Eventually she could move again, “but the pain never went away,” she said.

Partly believing in a guess from medical professionals, Ms Saraceno said, “The bite threw my immune system off so bad that it couldn’t recover.”

In the years to follow she arrived at another conclusion: “Once you have fibromyalgia, you have it, period.”

Ms Saraceno continued to work, “but not 100 percent,” she said. In 1999 she encountered another devastating hurdle. “Uterine cancer threw my immune system off even more,” she said.

With a mixture of sadness and irony, she said, “I went through the cancer more easily than the fibromyalgia.”

What It Feels Like

Although her pain has no understandable source, the threatening enemy she describes leaves unmistakable marks.

“In my case, my body attacked itself and attacked my thyroid,” she said. Another painful encounter occurred with her teeth.

“About five years ago it attacked the bone in my lower gum and dissolved it. Teeth had to be pulled,” she said.

Desperate for relief yet resigned to explain her problems as “just a way of life,” Ms Saraceno said her condition and resulting complications, “are the kind of thing doctors just can’t explain.”

Regarding fatigue, she explained her nightly pattern. “In most cases you can fall asleep, but not to stay, you wake up a couple hours later, then sleep another hour…”

She manages roughly four hours of sleep uninterrupted, at the most, she said.

Her everyday life is often burdened with exhaustion, discomfort, and limitations.

She describes what she calls, fibro-fog. “On some days I just don’t know…I am in such a fog that I just don’t know what to do with myself. I am in such a state of disorientation,” she said. “But that passes.”

Her pain is restless, moving from one spot to another on her body from day to day, she said.

“There is severe pain maybe throughout the body, but the next day it’s in the shoulders,” she said. “Next it’s the stomach — the pain travels.”

Muscle spasms also plague her. Centered on her coffee table is a thick volume of medical information regarding her conditions. Each time she experiences a pain, such as a numbness she described along the side of her face, she refers to the tome.

“This will tell me if it’s fibromyalgia,” she said. She wants to determine between symptoms of a stroke, for example, and the moving pains she has experienced for more than a decade.

Normal household routines become insurmountable for Ms Saraceno.

“I can clean the counters or make my own food, but nothing heavy,’ she said. Vacuuming is an impossibility. “I would be in bed the entire next day,” she said.

By juggling her expenses Ms Saraceno said, “I have someone do the vacuuming. I can’t really afford it, so I just cut out some other things.”

She drives, attends church, and does volunteer work, “But nothing stressful or strenuous,” she said.

(See related article regarding doctors’ approaches and treatment methods in this section)