Diagnosing Fibromyalgia

For many people with fibromyalgia, getting a diagnosis isn't easy. For some, it may take years of going from doctor to doctor. In fact, it can take an average of a year and a half and three doctors for people with fibromyalgia to get an accurate diagnosis. The process can be frustrating. However, research has shown that getting a diagnosis of fibromyalgia, along with education about it, is an essential first step in better managing the symptoms of fibromyalgia.

Why is making the diagnosis so difficult?

Making the diagnosis of fibromyalgia can be hard because there is no specific test for it. Your doctor can't see it on an x-ray or do a blood test. Instead, he or she relies on your symptoms.

But fibromyalgia symptoms can vary a great deal from one person to the next. And they can be similar to those of many other conditions. For example, some of the symptoms of fibromyalgia can look like those of rheumatoid arthritis, osteoarthritis, hyperthyroidism, and lupus. Your doctor may do tests to see if these other conditions are causing your symptoms.

Using criteria to make the diagnosis

The American College of Rheumatology has developed criteria for the diagnosis of fibromyalgia. Your doctor may use these to help in your diagnosis. These include:

• Pain all over the body (that is, on both the right and left sides of the body and above and below the waist) for at least 3 months
• Pain in at least 11 of the 18 tender-point areas of the body when pressed mildly but firmly on these areas
• Other signs or symptoms of fibromyalgia, such as fatigue, disturbed sleep, and morning stiffness

Location of the 18 tender points for diagnosis of fibromyalgia. From the National Institute of Arthritis and Musculoskeletal and Skin Diseases.

These guidelines are helpful, but there is still a lot of opportunity to better understand the condition. Some doctors believe that you can have fibromyalgia even if you don't have pain in 11 tender points. Others say that as long as you have widespread pain, you don't need to have tender points.

Tips for working with your doctor to get a diagnosis

The sooner you get a diagnosis, the sooner you may be able to better manage your symptoms. Here are some things you can try:

• Ask questions. Ask your doctor why he or she is doing each test. When you know the reasons, you'll understand the process better
• Keep records. Take notes at each appointment, and ask for the results of each test. That will keep you from having to start the process all over again if you need to see a new doctor
• Find a health care professional. Many health care professionals have experience managing fibromyalgia. Some may have more than others. Try to find one who will work with you as a partner
• Take an active role in the partnership. Learn as much as you can about fibromyalgia. Be open with your questions and concerns, and ask your doctor to do the same with you. That's the way to have a true partner

Key point to keep in mind: Do all you can to take an active role in your diagnosis.