By Bill Cissell, Journal Staff Writer
Rapid City Journal (Rapid City, South Dakota)
Just getting out of bed each morning is sometimes more than two Rapid City women can handle. Both suffer from diseases many doctors won’t admit exist and, instead, tell the women, “It’s all in your head.”
Pat Usera and Connie Pich suffer from fibromyalgia syndrome and Pich has chronic fatigue syndrome as well. There’s no known specific cause for either disease. Treatments, depending on the patient, range from medications to such things as acupuncture.
Usera, 58, and Pich, 49, say the fibromyalgia causes them pain ranging from mild to debilitating that can move from their muscles to ligaments to tendons throughout the day.
Pich said her chronic fatigue syndrome impairs her memory and concentration and interferes with her ability to get a good night’s sleep.
Usera said she was first diagnosed with fibromyalgia in the 1970s when she experienced severe pain in her shoulders and chest. She said she may have suffered from it as a child.
“I worked for years and years with it because I was always told, growing up, that everything was ‘mind over matter.'”
Stress, overdoing activities, anxiety and changes in weather can contribute to flare-ups.
“When I see clouds coming in, I know I’m going to have a bad day,” Usera said. She said many doctors she went to wanted to put her on Valium and psychiatric drugs.
“You begin to wonder if you aren’t crazy,” Usera said.
Pich was first diagnosed with chronic fatigue syndrome in the early 1980s after she and her husband had a bout of the flu. Her husband recovered in about two weeks, but it took her a year.
Pich finally had to give up her job as a psychotherapist because her memory loss became so bad. About three years later she was diagnosed with fibromyalgia.
Pich said that initially, she used to have about one good day in a year. She experienced feelings of isolation and loneliness and was unable to interact socially.
“My system reacts differently. When adrenaline is released, my system slows down instead of speeding up to give me more energy. It sucks the energy right out of me. I sometimes pass out,” she said.
She said with a combination of medications to help her sleep and some vitamins, she feels able to make some commitments, but still doesn’t know from day to day what her health will be.
Pich said she has an extremely supportive system of family and friends.
Usera said that except for her husband, Abe, the rest of her family doesn’t seem to understand the malady.
“It’s personally sad to me. My family doesn’t deal with us much and that goes even for my grandchildren. This has drawn us away from our family,” Abe Usera said.
Pat Usera said she feels lonely and Abe said he feels a loss of companionship. “People don’t want to be around others in pain,” Pat said.
Pich added, “That’s the crime of this illness; nobody’s getting your good stuff anymore.”
The biggest problem with the two illnesses is the diversity and complexity of symptoms that confront physicians, said Dr. Don Burnap, a Rapid City psychiatrist.
“For most diseases a doctor can do some tests and probably just talk to the patient to learn what the problem is,” Burnap said. But with diseases that aren’t understood, the general attitude is it isn’t real and only in a person’s mind, he said.
Burnap said his job was to help the victims of fibromyalgia and chronic fatigue syndrome to deal emotionally with the illness.
Although there isn’t an identified cause for either illness, Burnap said one cause might be a severe trauma.
After a severe trauma such as an auto accident or a prolonged illness, Burnap said research shows that pain can continue and lead to a “complicated cascade of changes, especially in the spinal cord.”
The Black Hills Chronic Fatigue Syndrome/Fibromyalgia Support Group provides a place for patients to share their concerns and experiences, as well as provide education to the community.
The support group was started in 1995 by Alice James, who has neither of the illnesses but had two friends who did.
She said that after getting her two friends together and seeing how much good it did them to visit with each other, she started the support group. “We had 60 people at our first meeting,” said James.
The support group meets from 10 a.m. to noon on the third Saturday of each month in the Rushmore Room of Rapid City Regional Hospital. For more information [if you live in the Rapid City area], call (605) 343-2293.
Source: Rapid City Journal (Rapid City, South Dakota). (c) Rapid City Journal. Online at http://www.rapidcityjournal.com.