What do actor Morgan Freeman and Irish singer-songwriter Sinead O’Connor have in common with Connie Gall, a retired college financial aid officer?
All three suffer from fibromyalgia, a chronic pain disorder with debilitating effects.
Gall, 59, has lived with fibromyalgia since 1990. Just four months after having back surgery that year, she was in a car accident that gave her severe whiplash.
The whiplash triggered a series of symptoms: migraines, widespread joint and muscle pain, TMJ trouble, restless legs, burning and cold skin sensations, sleep problems, fatigue, tinnitus and polyneuropathy.
Although Gall’s symptoms began 25 years ago, it wasn’t until 2004 that a rheumatologist connected the dots and diagnosed her with fibromyalgia.
Joshua Brinks, FNP, is a family nurse practitioner who works in the Spectrum Health Medical Group East Grand Rapids Family Medicine office and specializes in working with fibromyalgia patients. He and Gall, one of his patients, would like to shed some light on fibromyalgia and debunk some of the common myths associated with it.
Myth No. 1: Fibromyalgia isn’t real, it’s all in your head.
Fact—Fibromyalgia is a central nervous system pain processing disorder.
“It’s a chronic pain syndrome,” Brinks said. “We don’t know what causes it and we don’t have a cure. And so for patients to actually have a name (for their disorder) and to know that … it’s not in their head is very comforting or relieving to them.”
Gall agrees. When she finally found a doctor who “could put a name on what was going on with me, it made me feel validated … and it all started to make sense,” she said. “It’s (your) central nervous system playing games with you.”
In the last decade, more and more health care providers have accepted and acknowledged the reality of fibromyalgia, Brinks said.
“That’s a big step,” he said.
The next challenge is getting more people to understand it.
“It’s hard to explain to people it’s something that’s going on in your brain—that it’s your central nervous system that is controlling how you feel pain,” Gall said.
Myth No. 2: Health care providers diagnose fibromyalgia when they can’t find a “real” diagnosis.
Fact—There are defined diagnostic criteria for fibromyalgia. If a patient meets these criteria and if other diseases are ruled out, the diagnosis is quite clear.
“I can diagnose it in a single visit,” Brinks said, giving two main diagnostic criteria:
- Widespread pain above and below the waist on both sides of the body for three months or longer.
- Eleven out of 18 classic tender points—again, above and below the waist on both sides of the body.
“There’s no blood test for it, although sometimes we do a blood test to rule out other things that can mimic it,” Brinks said.
Myth No. 3: If your muscles hurt so much, there must be something wrong with them.
Fact—The problem isn’t in the muscles themselves, but in the way the brain is interpreting signals.
“The fact is,” Brinks said, “they’ve done studies to look at the muscle fibers, they’ve looked at biopsies, pathology studies—they can’t find anything wrong here.”
So if you have fibromyalgia, you need to “retrain your brain into thinking that if (your) husband gives (you) a hug and that causes pain, it’s not actually causing harm to the tissue,” he said.
Myth No. 4: Fibromyalgia is a syndrome that affects only women.
Fact—Between 10 and 20 percent of fibromyalgia patients nationwide are men, according to the National Institutes of Health.
These statistics match the patient demographics Brinks sees in his practice.
Myth No. 5: Fibromyalgia is rare.
Fact—Experts estimate that more than 5 million adults in the United States have it.
“It’s actually one of the most common pain disorders,” Brinks said.
Myth No. 6: Fibromyalgia is hopelessly untreatable.
Fact—Although fibromyalgia has no cure, several treatments can be helpful. Patients respond best if they keep a positive attitude and try various treatments to find what works for them. Brinks mentioned several:
This is where treatment should start for every patient, said Brinks, who spends extra time helping newly diagnosed patients understand what he knows about fibromyalgia.
Gall advises people to find out as much as they can about their illness and its symptoms.
“One of the things that helped me was to really learn about it,” Gall said. “I found reading about it, understanding what all these things are, it made them less scary.”
Almost all patients with fibromyalgia experience non-restorative sleep.
“We don’t necessarily know why, but … the quality of their sleep is not good, so they wake up feeling tired,” Brinks said. The result: intensified pain.
Brinks tries to help patients develop good sleep behaviors and patterns. He also looks for underlying sleep disorders, such as obstructive sleep apnea, and works to treat them.
Low-impact aerobic exercise
Using an elliptical machine, swimming, riding a bike, going for a fast-paced walk—any of these exercises can improve a patient’s sleep and mood, and they can also reduce pain. “Initially it makes your pain a little worse, but then it gets better with time,” Brinks said. Activities like yoga and tai chi can help, too.
Cognitive behavioral therapy
Try a multidisciplinary approach to treatment, Brinks suggested. Working with a therapist or pain psychologist, some patients experience improvement through relaxation and breathing techniques or through guided imagery.
Brinks often starts patients on a low dose of amitriptyline, which can help improve sleep and pain. He might also prescribe drugs that block the reuptake of serotonin and norepinephrine in the brain, which can help improve a patient’s mood and reduce pain. Some patients also find that anticonvulsant medicines help reduce pain.
The medications’ effectiveness can vary from patient to patient. “Sometimes it’s just one drug, sometimes it’s a combination,” Brinks said.
But narcotics are not in the mix: “Research has shown over and over again that narcotics do not help fibromyalgia,” he said.
Address underlying mood disorders
Treating anxiety and depression, which often go hand in hand with fibromyalgia, can ease the burden of living with the disorder.
Gall is a firm believer in eating right.
“I don’t know what shape I’d be in if I didn’t eat so well,” she said. “If you let that slide, it’s like a domino effect.”
Overall, attitude makes a big difference for people with fibromyalgia, she said.
“I love life. I think this is a pretty cool place to be, and if you’re always talking to the people you run into about the latest thing your doctor has told you to do, that means you’re concentrating on your condition,” she said.
“Except for those days when I’m screaming through those stabbing pains or curled up like a ball with a migraine for three days, I’m going to try to do the rest of life with a smile on my face,” she said.
Brinks said people who have good attitudes and a willingness to try new things will experience better outcomes.
One strategy Brinks recommends is the “three P’s” approach:
- Prioritize—“If you have a day off work and you have 12 errands you want to run, you need to shorten that list,” Brinks said. “What are the things that are most important?” If you take on too much, the stress can impact your sleep and “all of that is like the perfect storm for fibromyalgia to flare up,” he said.
- Plan—Based on your priorities, think about how you should approach your tasks and what’s reasonable to expect of yourself.
- Pace yourself—If you have three errands to run, don’t try to do all of them in the first two hours. Space them out, Brinks said. Gall told of a day when she didn’t pace herself as she prepared the house for a family gathering. She ended up in so much pain, she could hardly enjoy the party.
Above all, Brinks said, don’t let pain rule your life. Recognize there will be good days and bad, and remind your brain that your pain is “not life threatening—it’s annoying and frustrating, but it’s not going to cause terminal illness,” he said.
Still, it may bring about major life changes. For Gall, the pain and other symptoms of fibromyalgia became so bad she eventually had to retire early from a job she loved.
Looking to fill the void, she and her husband began adopting older dogs from animal shelters, giving them a safe home in their later years. The sense of purpose this gives her is a tremendous help, Gall said.
After decades with fibromyalgia, she’s found the best strategy is to face it with grit and resolve.
“Even if I have to do life in pain every day, ranging from a pain level 3 to a pain level 10, I don’t get to go back and do it again,” she said, “so I’m going to try to be as good at it as I can.”