By JENNIFER WEAVE, The Spectrum CEDAR CITY, UTAH —
When modern medicine fails, utilizing what personal resources are left is the only option in dealing with an indistinct illness that no laboratory tests are available to diagnose. That's what motivated Evelyn Nelson, 50, to take her incurable disease — fibromyalgia — into her own hands. With her husband Keith at her side, the couple took out a second mortgage on their home to install a therapeutic swimming pool. That was three years ago, and now the Nelsons want the public to know about their journey so others do not have to struggle as they did. "After finally being able to put a name to what I had, that is suspected as something I've had since I was a child but I didn't know it, was validating," Nelson said. "I was 25 before I was told I had fibrositis and up until then I just thought I was weird. … But I wasn't. I had a monster that could've destroyed me and it was very, very hard but I won't let it destroy me and no one should."
Fibrositis and fibromyalgia — meaning muscle pain — are classified as the same dysfunction. They are complex chronic pain illnesses that have no cure and affect up to 6 million Americans. The condition disrupts routine life activities that have to be altered to relieve symptoms that include stiffness, pain, tenderness in muscles and tendons at specific "trigger points." The trigger points are distributed over the back of the neck and shoulders, the sides of the breastbone and the bony points of the elbows, pelvis and hips. In addition there are a plethora of consequences that affect the rest of a person's health such as poor sleep, anxiety, depression, fatigue and even irritable bowel syndrome.
Nelson swims in her pool every day to work out the joints and muscles to be able to handle daily living demands. She even instructs other women suffering from similar ailments with swimming exercises three times a week in her homemade pool. That generosity to others is a character trait of Nelson, said her daughter Carrie Armbruster. She recollected as a child her mother reading, coloring, playing with dolls and puppets with her and her siblings while bedridden. "Mom was just always there for us, even in extreme pain from her bed. We just thought it was fun to dog pile on her bed and spend time with her," Armbruster said. She credits her mother for not complaining and being so resourceful in her coping skills when there wasn't the knowledge and understanding of fibromyalgia in the medical community — in the 70's when her mother was afflicted to the point of being told she had less than a year to live, to the present where some physicians are still unaware of the disease. "You wouldn't know that she has fibromyalgia from outer appearances because she is so positive and outgoing," Armbruster said. "She doesn't want sympathy but what she does want is people to be more educated about the disease. It is still quite misunderstood."
Earlier incidents of doctors testing Nelson for Multiple Sclerosis, a brain tumor and other related conditions associated with pain, disability and morbidity occasionally repeat themselves when medical attention is sought. "Last fall, I had horrible pain in my chest that was constant and I was hooked up to an EKG and underwent stress tests that showed nothing," Nelson said. "The doctor wanted to prescribe me anti-depressants just like had been done three or four times in my past." She continued, "I told him that if was always in constant pain that didn't he think he would be a little depressed, too. It's not depression causing my pain, it's the pain causing the depression. Regardless, that had nothing to do with my chest pain that gradually went away over time."
Nelson said she realizes fibromyalgia is a part of life that will always be present. She's chosen an attitude in dealing with it that motivates her to get up each morning, swim in her pool, and keep moving every day. "I am grateful for the battle. It has made me stronger, more compassionate and understanding of others and less selfish," Nelson said in a personal account. "As I have tried to counsel and encourage others, it has brought me great joy to help in the healing process of pain both mental and physical." "I have learned not to be afraid to try new things, to change what I eat, how I sleep and where, and how to process life in a more positive manner," she added. "I have found God in my extremities, and that is sweet indeed. I have learned one very important thing and it is 'Let your hope make you glad, be patient in times of trouble and never stop praying.'"
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