Fibromyalgia myths: The truth about nine common myths

From the FMS Global News Desk of Jeanne Hambleton

Courtesy of Mayo

By Mayo Clinic Staff

Fibromyalgia is a widely misunderstood condition that causes widespread pain and fatigue. If you have been diagnosed with fibromyalgia and are trying to learn all you can about the condition, you may come across some of the many common myths and misconceptions about fibromyalgia. Do not let these myths confuse you or discourage you from seeking help for your fibromyalgia symptoms. Here is a look at nine common myths about fibromyalgia and why each is wrong.

Myth: Most doctors do not believe fibromyalgia is a real condition.

Truth: This myth may come from a misunderstanding. Since fibromyalgia is defined by a list of symptoms, claiming that fibromyalgia is not real is essentially saying that your symptoms aren’t real. That does not make sense. Most doctors believe your symptoms are real.

The controversy comes when deciding whether fibromyalgia is a disease process that can be reversed or cured. Most doctors believe fibromyalgia is a set of symptoms that are not caused by an underlying disease. Most doctors believe that fibromyalgia symptoms can be managed, but there is no underlying disease to “cure.”

In some cases, a doctor may not be familiar with fibromyalgia. He or she can refer you to someone who knows more about the condition.

Finding a compassionate doctor can be a frustrating part of living with fibromyalgia. But do not give up if you haven not found the perfect doctor. Focus on finding a doctor who is willing to listen to you and take you seriously.

Finding a doctor who is an expert on fibromyalgia may not be practical, for instance, if there are not many specialists in your area. But a doctor who is willing to learn more about fibromyalgia and listen to your concerns can be an invaluable ally.

Myth: Fibromyalgia damages your joints.

Truth: Though fibromyalgia pain can be severe at times, it does not damage your bones, joints or muscles. Some people worry that when pain worsens, it means that fibromyalgia is progressing. But that is  not the case. While increasing fibromyalgia pain can make it difficult to go about your daily activities, it is not damaging your body.

Myth: You look fine, so there’s nothing wrong with you.

Truth: You know this is a myth, but friends, family and co-workers who do not understand fibromyalgia may sometimes hold this belief. It can cause tension when others wonder if you are faking your pain because they think you do not look sick. Resist the urge to get angry and withdraw rather than explain how you are feeling.

Open and honest communication can help others better understand fibromyalgia. Be honest about how you feel and let others know that if they have questions, you are willing to listen and explain.

Myth: You were diagnosed with fibromyalgia because your doctor couldn’t find anything wrong with you.

Truth: Fibromyalgia is a specific diagnosis based on your symptoms, not a diagnosis you are given when there is nothing wrong with you. The American College of Rheumatology developed a set of criteria to help doctors diagnose fibromyalgia.

Diagnosing fibromyalgia often takes time. Since there is no single test that can confirm you have fibromyalgia, your doctor will often run tests and procedures to rule out other conditions. Enduring repeated tests can be frustrating, but it is an important part of determining whether your symptoms are caused by fibromyalgia or something else. The results will guide your treatment.

Myth: Fibromyalgia causes pain. Those other symptoms you are experiencing must be caused by something else.

Truth: Fibromyalgia can cause symptoms in addition to pain. Many people with fibromyalgia also experience fatigue and difficulty sleeping. Other fibromyalgia symptoms may include headaches, sensitivity to light, dizziness, memory problems, and numbness and tingling in your arms and legs. A number of other conditions commonly accompany fibromyalgia, including irritable bowel syndrome, bladder control problems and mood disorders, such as depression and anxiety.

Myth: No treatments for fibromyalgia exist, so it is no use going to the doctor.

Truth: There is no standard treatment for fibromyalgia, and the Food and Drug Administration has approved just one drug for treating fibromyalgia. But you have many options for controlling fibromyalgia pain, including medications, lifestyle changes, and complementary and alternative treatments. Often you will need to try a few treatments in different combinations to determine what works best.

Myth: On days when you are feeling good, you should try to do as much as you can since you may be unable to accomplish everything you want on other days.

Truth: Overdoing it on the good days may catch up with you. You may feel exhausted the next day and your fibromyalgia symptoms could worsen. But that does not mean you should keep your activity to a minimum. Doing very little could weaken your muscles and increase your pain.

Cope with the good days and the not-so-good days by finding a balance. Pace yourself. Set goals for each day. Your goals should be reasonable. And they should include daily exercise and time for yourself, such as time to relax or listen to music.

Myth: Fibromyalgia is a life-threatening disease.

Truth: Fibromyalgia is not fatal and it does not damage your body. Fibromyalgia symptoms fluctuate over time, sometimes getting worse and sometimes becoming milder. Fibromyalgia pain rarely disappears completely, but you can learn to gain some control over it.

Myth: You cannot have a productive life with fibromyalgia.

Truth: Learning to control your fibromyalgia pain takes time. It is likely that the pain will never completely go away and you will have to accept that your life might never be the same. But that does not mean your life cannot be satisfying and productive.

Work with your doctor to adapt your daily activities so that you can have time and energy for what is important to you. Your strategy may include a number of approaches, such as setting goals, for instance, making time for relaxation exercises every day, or making lifestyle changes, such as walking most days of the week.


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