Fibromyalgia misconceptions: Interview with a Mayo Clinic expert

Connie Ludtke, R.N.

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Fibromyalgia is a widely misunderstood condition that causes widespread pain and fatigue. If you've been diagnosed with fibromyalgia and are trying to learn all you can about the condition, you may come across some myths and misconceptions about fibromyalgia.

In this interview, Connie Luedtke, R.N., the nursing supervisor of the Fibromyalgia and Chronic Fatigue Clinic at Mayo Clinic, Rochester, Minn., answers questions about some of the most common misconceptions about fibromyalgia.

What is the most common misconception about fibromyalgia?
The top misconception is that people think fibromyalgia isn't a real medical problem or that it is "all in your head." It's sometimes thought of as a "garbage-can diagnosis" — if doctors can't find anything else wrong with you, they say you have fibromyalgia. Being diagnosed with fibromyalgia does require that you meet specific criteria, including painful tender points above and below the waist on both sides of the body.

There's a lot that's unknown about fibromyalgia, but researchers have learned more about it in just the past few years. In people who have fibromyalgia, the brain and spinal cord process pain signals differently; they react more strongly to touch and pressure, with a heightened sensitivity to pain. It is a real physiological and neurochemical problem.

Why does this misconception persist?
In our society, people tend to think that there is a cure or a fix for every medical problem. You go to the doctor, expecting he or she will fix whatever's wrong with you with medication or surgery. It's frustrating to people with fibromyalgia because the traditional treatment approach isn't effective. And it's also frustrating to health care providers because they want to help people. But there's no easy fix. It takes lifestyle changes and small steps toward achieving wellness. It's a process.

How have misconceptions about fibromyalgia changed over the years?
More people understand that fibromyalgia is a real problem, often because they know someone who has it — perhaps a sister or daughter or mother. Health care providers are seeing that people who have fibromyalgia can manage their symptoms with lifestyle changes to improve their overall functioning and quality of life. And there's hope for the future.

Are people who have fibromyalgia more likely to try unproven remedies?
People who have any chronic disease that doesn't respond to conventional treatment often turn to other types of remedies. People who have fibromyalgia tend to use more dietary supplements. Some people think that there's a magic diet for fibromyalgia. They think that they should avoid refined flour and sugar, sugar substitutes, the caramel color in some soft drinks, or carbonated drinks in general. But there hasn't been any research-based evidence demonstrating that any of these substances cause the symptoms, nor that removing these substances from your diet works to make the pain go away. There may be anecdotal evidence — people who say that something helps relieve their symptoms — but there's no clearly identified problem foods or magical diet cure yet.

Is a placebo effect at work here?
The power of the mind is a real factor in pain perception. For example, studies have shown that anxiety that occurs in anticipation of pain is much more problematic than the pain experience itself. In that sense, the mind has a negative impact on symptoms.

Many of the people who come to our fibromyalgia clinic are perfectionists who have very high expectations for themselves; likewise they can't adjust to more realistic expectations after they develop fibromyalgia symptoms. These people have difficulty learning to relax. They may push through the pain and keep doing activities to the point they crash and burn and need extra time to recover.

So the pain keeps reinforcing itself in a never-ending cycle. People report lower levels of pain when they can slow their heart rate by deep breathing and doing other relaxation techniques. In our clinic, we teach people about tools they can use to tap into what they have within their own power.

Can misconceptions about fibromyalgia be harmful?
If people with fibromyalgia believe there is no help for them, they're going to stay stuck. Even if there isn't a cure, there are treatments that can really improve their quality of life. When people learn they have fibromyalgia, they can go through the stages of grief and loss — including experiencing anger and attempts at bargaining. When they get to the peace of acceptance, that's when they can realize there are limits to what medical technology can do. There's no magic surgery or pill that can fix this. They need to recognize that it's OK to ask for help with things and that it's OK to give themselves time for exercise and relaxation each day. They need to make their own health a priority.

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