When Barbara Sistrunk began experiencing constant severe pain that seemed to jump from place to place in her body, she wound up jumping from doctor to doctor trying to find someone who could at least alleviate her pain.
“It was so bad that I was going through deep depression because I couldn’t get any relief from it,” said Sistrunk, a member of Walkers Chapel Baptist Church, Fultondale.
Then she found a doctor who knew something about fibromyalgia.
“He got me a lot of literature, and told me that there was no magic pill for this,” Sistrunk said. “He said (its progress) would have a lot to do with how I manage it.”
The disease, which affects approximately 2 percent of Americans, is a form of soft-tissue rheumatism that causes pain and stiffness in the muscles, bones, tendons and bursae, according to the American College of Rheumatology (ACR).
The most prevalent symptom of fibromyalgia tends to be widespread pain throughout the body and in specific muscular “tender points.” These 18 points are areas of the body that are painful when pressed.
These points are also the most common way to diagnose fibromyalgia, according to ACR criteria. That criteria said that a person has fibromyalgia if he or she has a history of widespread pain of at least three months’ duration and pain in at least 11 of 18 specific tender point sites.
Fatigue and exhaustion similar to what one experiences with the flu is another symptom of fibromyalgia, and can even be greater than the pain for some.
Kaye Sutley, corporate director of public relations for Baptist Health Systems, said the fatigue tends to be her worst enemy.
“Sometimes I’m so tired I just can’t raise my arm,” said Sutley, a member of Lakeside Baptist Church, Birmingham.
There are other symptoms from which fibromyalgia patients suffer, such as severe headaches and abdominal pain, as well as related conditions, like osteoarthritis and other rheumatic diseases (see graphic).
Dr. Regina Gilliland of Birmingham, who has been treating fibromyalgia patients for 12 years, is board certified by the American Academy of Physical Medicine and Rehabilitation. She said, “A diagnosis of fibromyalgia is not enough because I have yet to see patients who just have fibromyalgia.”
Gilliland said the fibromyalgia does not make the other conditions worse, but many times their symptoms are similar to those of fibromyalgia, making both them and the fibromyalgia hard to diagnose.
Dr. Louis Heck, a rheumatologist with the Arthritis and Musculoskeletal Center at Birmingham’s Kirklin Clinic, said the overlapping symptoms combined with the fact that blood tests, CAT scans, MRIs and other tests come back clear, creates a diagnosis by process of elimination.
“Doctors have to take these patients at face value,” he said. “You make an effort to treat them and then have them back,” which can cause frustration for those who have fibromyalgia and their doctors.
Sistrunk said she felt doctors weren’t taking her seriously because they wanted to prescribe her nerve pills for the pain and sent her to see a psychiatrist because the pain was just in her head.
But, “I gave up on that theory when they started asking me what kind of relationship I had with my mother,” she said.
Trying to describe their pain and fatigue in a way that others can understand is perhaps the hardest part of dealing with fibromyalgia in relation to others.
Sistrunk said, “At first, it was hard because [my family] just didn’t understand, and a lot of times they got frustrated.”
But now, she said, her family has learned to be sensitive to how she feels and her limitations on the days when fibromyalgia’s symptoms are hitting her the hardest.
Although fibromyalgia may keep someone from participating in normal activities some days, there are other days the person feels fine and can deal easily with the routines of life.
“A person with fibromyalgia can certainly take part in normal church activities,” Sistrunk said. “They’ll tell you what their limitations are.”
And since she found a doctor who understands fibromyalgia and is treating her for it, Sistrunk said her good days far outweigh the bad.
“I wallowed in it for about two years and got to where I couldn’t make it through the day without a nap,” she said. “I couldn’t be the grandmother that I needed to be.”
But now, “I’m going strong,” Sistrunk said.
Following her doctor’s advice, Sistrunk manages her fibromyalgia through a program of exercise, diet, vitamins and education.
“I have found out for me, it’s something that’s up to me to manage,” Sistrunk said. “I became more aware of how what I ate affected me. I went to a rehabilitation place for an exercise program. I’m not in rehab, but I felt they would do a better job (developing one) than I would.”
But the mainstay of her treatment program is neither her doctor, nor the advice she gleans from books and Web sites.
It is the support and prayer from the Sunday School class that she teaches at Walkers Chapel and the prayers of the pastor, Dan Nichols (see story, page 8), who understands her pain.
“Honestly, the Lord has led me to the answers,” Sistrunk said. “Prayer really helped me through because I’m not smart enough to figure it out on my own. [Walkers Chapel Baptist] is a very prayerful church, and I could not have gotten through this without them.”
Sutley agreed, adding that her faith in the Lord has helped her through many rough days. “I know I’m not going through this by myself,” Sutley said. “He is there with me, and He has put other people in my life, like my husband to help see me through.”
What you need to know about fibromyalgia
Fibromyalgia
A form of soft-tissue rheumatism that causes pain and stiffness in the muscles, bones, tendons and bursae. Affects about 7 to 10 million Americans — about 2 percent of the population — 75 percent of whom are women.
Symptoms
Primary: Multiple tender points, widespread aching, stiffness and fatigue
Secondary: Severe headaches, abdominal pain, bloating and alternating bouts of constipation and diarrhea as well as cramps, dizziness, restless legs and pain in the tempromandibular joint (TMJ), hands, arms, feet, legs or face.
Related conditions
Acid reflux, irritable bowel syndrome, spastic colon, skin rashes, mitral valve prolapse, osteoarthritis, rheumatoid arthritis, spinal arthritis and other rheumatic diseases, poor memory, depression and anxiety.
Diagnosis
No test currently exists to identify fibromyalgia. Tests such as X-rays, CAT scans, MRIs and blood tests show nothing. A diagnosis of fibromyalgia is given therefore, by a process of elimination and if, according to American College of Rheumatology criteria, the patient has a history of widespread pain of at least three months’ duration and pain in at least 11 of 18 specific tender point sites.
Causes
No known cause at this time.
Research is being done as to genetic and environmental factors such as stress or injuries, as well as possible chemical imbalances in the body. Abnormalities in the levels of neuropeptides that convey pain messages have been found in those with fibromyalgia.
Prognosis
Nonterminal. Symptoms may flare up sporadically related to conditions such as the weather, diet and stress levels. Some doctors even think fibromyalgia may go away completely after time.
Treatment
No one pill will cure fibromyalgia. Treatment is usually a regimen prescribed by a physician consisting of medication, vitamins, exercise, regulation of diet, massage and other therapies to treat symptoms and pain.
Research
Much research being done into the causes and optimal treatment of fibromyalgia. The Arthritis Foundation is currently sponsoring six areas of research.
These research projects are focused on understanding the role of neurological and psychological factors in fibromyalgia, evaluating ways to help people control their fibromyalgia and evaluating the role of treatment options such as exercise, medications and complementary and alternative therapies.
One such project is located at the University of Alabama at Birmingham.
Dr. Nancy McKendree-Smith is examining how pain anxiety and the nervous system lead to a heightened pain response in people with fibromyalgia.
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