By Monique Curet
Staff Reporter, The Mobile Register
Susan Holsombeck used to run: a few miles on any given weekday afternoon, the Azalea Trail race in spring. Now, she sometimes dreams that she’s running.
Susan Holsombeck and others like her who have been diagnosed with fibromyalgia — a condition that causes persistent, widespread pain, fatigue and poor sleep, among other problems — find that they have to alter their lifestyles, often dramatically, to accommodate the syndrome.
Holsombeck quit her job as an assistant professor of nursing at the University of Mobile because she said the pain didn’t allow her to juggle work and family. And she quit running.
Julianne Jackson, who also has fibromyalgia and lives in Mobile, had to curtail her extensive volunteer activities and scale back her schedule.
Fibromyalgia, which has had established diagnostic criteria only since 1990, is now among the most common reasons people consult a rheumatologist, according to reports.
It’s considered an arthritis-related condition. Although arthritis literally means joint inflammation, the term is “often used to indicate a group of more than 100 rheumatic diseases … (which) affect not only the joints but also other connective tissues of the body,” according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases.
To raise awareness and money for research, the Mobile Bay Area Arthritis Walk will be held today for the first time, said Appie Head, the development director for the Mobile branch of the national Arthritis Foundation, which is staging the event. All walk participants will receive free tickets to that evening’s Mobile BayBears baseball game, Head said.
Living with chronic pain:
The pain experienced by fibromyalgia sufferers seems to vary from person to person, said Dr. Thomas McGee, a Mobile rheumatologist who treats between 200 and 300 people with the syndrome. The pain “typically seems to be continuous and unremitting.”
McGee added that “chronic pain leads to an alteration in pain response,” and a change in mood.
Jackson said it’s difficult to get up in the mornings, and then by late afternoon or early evening, the pain and fatigue seem to pile up.
One day the pain may be stabbing, another day it may be flu-like, Jackson said. She calls fibromyalgia the “invisible illness,” because those with the syndrome often appear outwardly healthy.
Fibromyalgia “is not a degenerative or deforming condition, nor does it result in life-threatening complications,” writes Dr. Don Goldenberg of the Tufts University School of Medicine. “However, treatment of chronic pain and fatigue are challenging, and there are no ‘quick cures.'”
Doctors have told Jackson that when she hurts the most, that’s when it’s most important to move.
Jackson, who walks for exercise, sometimes would cry from the effort of it. But, she said, the walking seems to loosen everything and helps with stiffness and discomfort.
Though doctors are not sure why, people who are fit seem to be less affected by the symptoms, McGee said.
Holsombeck said that when she first was diagnosed, she would go to the gym and become angry because she could only stay for 15 minutes instead of her usual hour.
Both women said they went through a grieving process, mourning for the lives they had before or the future that might be different than expected.
But, Jackson said, a choice has to be made: “Are you going to let it define your life or are you going to walk forward with courage?”
Causes and diagnosis:
It’s unknown what causes fibromyalgia, which is seven times more common in women than in men, according to the American College of Rheumatology. There is no known cure.
Some researchers think it could be caused by an injury or trauma that then affects the central nervous system, while others think it could be triggered by a virus in susceptible people, the National Institute of Arthritis and Musculoskeletal and Skin Diseases reports.
“In addition, some studies indicate that the symptoms of fibromyalgia occur secondary to abnormally heightened pain perception, with associated inactivity and muscle deconditioning,” writes Goldenberg. “Changes within the brain are thought most likely to be responsible for such abnormal pain perception.”
McGee said the syndrome is not a disorder of the muscles and joints but a response of the central nervous system to chronic pain.
Holsombeck was diagnosed about four years ago, after she had cervical fusion surgery, which may have been the byproduct of a whiplash injury.
Jackson, who had meningitis about 15 years ago and has experienced problems ever since, was diagnosed with fibromyalgia about six or seven years ago.
Fibromyalgia is diagnosed in part by a physical examination that reveals excess tenderness in at least 11 of 18 specific, defined spots.
“Individuals are often affected by fibromyalgia for several years before receiving an appropriate diagnosis,” according to Goldenberg. “During the diagnostic process, patients may have undergone multiple testing procedures, consulted with numerous specialists and been incorrectly advised that … ‘there is no clinical basis for your symptoms.'”
Jackson, who at first grappled with accepting the diagnosis, finally came to embrace it. She said she felt like the syndrome was a knock on the door from God, telling her to slow down and be grateful.
She has chosen to keep participating in the things that are most important to her, and she’s taken up painting and writing.
Jackson added, “It’s funny how, if you’re walking slower than everyone else, you get a kind of wisdom.”
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