Misconceptions about fibromyalgia abound – even among doctors – starting with the belief that it may not even exist. For sufferers, that means delayed diagnosis and treatment of this debilitating, painful condition. Jenna Abts, 27, a Seattle-based artist, knows that situation well. She has suffered from fibromyalgia since she was a teen, when she was initially misdiagnosed with anxiety. “Most doctors dismissed my complaints of joint pain as some kind of hypochondriac fantasy,” she says.
“I saw four doctors before I was lucky enough to find an internal medicine doctor who recognized the symptoms. I’m sure that given that I was a teenager, nobody thought to look at a chronic pain disorder.”
Her situation isn’t uncommon. It takes an average of five years to get diagnosed, according to the National Fibromyalgia Association (NFA).
One reason is that fibromyalgia can’t be identified through diagnostic tests such as blood work, MRIs, CT scans and X-rays, says Patrick Wood, M.D., a fibromyalgia specialist who practices in Seattle.
Also complicating diagnosis: The condition can strike with a host of co-existing conditions – such as chronic fatigue syndrome, depression and lupus – and involve pain in many parts of the body. As a result, many people with fibromyalgia struggle to find both answers and relief.
Here, experts explain the science behind 5 common beliefs about this chronic pain disorder.
1. Fibromyalgia isn’t a real disease
Well, that’s actually true. It’s not a disease, but a disorder.
Because there are no diagnostic tests, doctors rely on self-reported symptoms, patient histories and a physical examination to see if patients fit this criteria.
To be diagnosed with fibromyalgia, patients must have chronic, widespread pain that has been present for at least three months. Pain has to occur on both sides of the body, above and below the waist.
The exam also includes checking for soreness in 11 of 18 “tender point sites,” which include the back of the head, upper chest and tops and sides of knees. These are tested by applying moderate pressure on each area.
2. Fibromyalgia is all in the patient’s head
This is false, but many patients are left feeling that way when doctors don’t detect their fibromyalgia or misdiagnose it as solely the depression, anxiety or trauma that often accompany it.
When they do find a doctor who suspects fibromyalgia, the physician must convince patients they aren’t imagining their symptoms.
“I sometimes show them evidence from a 2002 study [done at Georgetown University Medical Center and the National Institutes of Health] proving that patients with fibromyalgia feel pain more acutely than other people,” says John Stracks, M.D., an integrative medicine physician who practices at Northwestern Memorial Hospital in Chicago.
According to the NFA, symptoms can include the following:
- Joint and muscle pain
- Chronic tension headaches and migraines
- Anxiety, insomnia
- Hypersomnia (sleeping too much)
- Irritable bowel syndrome (IBS)
- Tingling, burning and skin sensitivity
- Chronic low-grade fever and flulike symptoms
- Restless legs
- Vision problems
- Impaired memory and cognitive function
Both can leave patients with low energy levels, but because they stem from different causes, using the same treatment for both could be harmful, he adds.
5. Fibromyalgia isn’t treatable
Not true. There are several ways to manage it.
The Food and Drug Administration has approved medications to treat fibromyalgia. But they do, however, come with potential side effects, including weight gain, drowsiness and loss of sex drive.
Depression and/or depressive symptoms are prevalent among patients with fibromyalgia, so treating that problem can improve quality of life.If stress is a factor, as it is for many fibromyalgia sufferers, cognitive behavioral therapy (CBT) can provide better ways to manage it. Several reputable studies, including one in 2006 by the University of Louisville, Ky., have found people with high levels of childhood trauma are more likely to develop fibromyalgia. For these patients, Stracks calls on the help of clinicians with experience in trauma healing.
Fibromyalgia patients should consume foods with anti-inflammatory properties, to prevent pain caused by inflammation.
“That means limiting foods with simple sugars and carbohydrates, fatty meats, and processed and fast foods,” Stracks says. “Instead, people with fibromyalgia should eat mostly lean meats, complex carbohydrates, fruits, vegetables, and nuts and seeds.”
Patients should also avoid food additives like monosodium glutamate and the artificial sweetener aspartame, which can increase pain. Taking fish oil supplements and avoiding common allergens, such as eggs, wheat and dairy, may also help.
Gentle exercise such as yoga, water aerobics and daily walking can be helpful, Stracks says.
Learning more about how fibromyalgia affects your body and daily life can make it easier to ward off pain triggers.