Fibromyalgia symptoms or not? Understand the fibromyalgia diagnosis process

The sooner your fibromyalgia symptoms are diagnosed, the sooner they can be treated. Find out how to ensure you don't spend years searching for a fibromyalgia diagnosis.

If you have widespread pain, you and your doctor may wonder if you're experiencing fibromyalgia symptoms. But determining whether you do indeed have fibromyalgia symptoms isn't an easy process. It's not uncommon to spend years going from doctor to doctor and undergoing tests for conditions as varied as arthritis, depression and multiple sclerosis before reaching a fibromyalgia diagnosis.

The fibromyalgia diagnosis process can be frustrating. Here's a look at why it may take so long to go from fibromyalgia symptoms to fibromyalgia diagnosis and what you can do to make the process more efficient for you and your doctors.

Fibromyalgia symptoms: Not always as clear

Fibromyalgia can't be easily confirmed or ruled out through a simple laboratory test. Your doctor can't detect it in your blood or see it on an X-ray. Instead, your doctor relies on your symptoms. Unfortunately, fibromyalgia symptoms may vary widely from one person to the next.

The American College of Rheumatology (ACR) guidelines direct doctors making a fibromyalgia diagnosis to test 18 points on your body for tenderness. Your doctor puts light pressure with his or her fingers on each point to see whether you feel pain. ACR criteria state that pain at 11 of the points may indicate fibromyalgia. Even that guideline is controversial, though, and some specialists question whether it's useful because fibromyalgia symptoms may come and go. You may experience pain in one area of your body, rather than over your entire body.

To further complicate the diagnosis, you may experience signs and symptoms that are seemingly unrelated to fibromyalgia. Chronic stomachaches or headaches combined with the pain you're experiencing may lead your doctor to suspect other similar conditions first.

Excluding other possible causes for fibromyalgia symptoms

As your doctor moves toward a fibromyalgia diagnosis, he or she may want to rule out many diseases and conditions that mimic or are related to fibromyalgia. Testing for some of these diseases and conditions may make sense to you — for instance, you may find it reasonable that your doctor wants to rule out rheumatoid arthritis, since that disease also causes pain.

But the idea of tests for other conditions may be frightening. When your doctor suggests exams and tests for conditions such as cancer, kidney problems or multiple sclerosis, you may be alarmed.

Ruling out all of these conditions may be part of your diagnosis process. Talking openly with your doctor about your fears can help you understand what he or she is looking for with each test and how each test is part of making a final diagnosis.

What you can do

The sooner your doctor arrives at a fibromyalgia diagnosis, the sooner you can begin treatment to get your fibromyalgia symptoms under control. Here's what you can do to help yourself and your doctor during this process:

• Understand what your doctor is looking for. Ask your doctor to explain each disease and condition he or she is testing for and why. Ask for reliable sources of further information. When you better understand the diagnostic process, you'll feel less frustrated. If your doctor orders a blood test to look for lupus, ask why. Does he or she think lupus is a more likely cause of your symptoms? Or does your doctor just want to rule lupus out?

  If your doctor orders exams or sends you to a specialist for a condition that doesn't make sense to you, ask questions then, too. For example, if you’re referred to a neurologist, you may wonder if your doctor misunderstood your symptoms or perhaps didn't listen to you. Ask questions to clarify the reasoning.

• Keep records of the tests and procedures you've undergone. Each time you see a new doctor or specialist, avoid having to start the diagnostic process all over again. Ask for records of the tests you undergo and the results. Sometimes there may be an advantage to having an exam or test repeated, but in many cases you may save time and money by showing your new doctor your records.

  Many times your records will be forwarded to a new doctor or specialist. But that isn't always the case. In some instances the new doctor or specialist will receive only portions of your medical records.

• Find the right doctor. Find a doctor you trust — someone who communicates well and is willing to work as a team with you. Not all doctors have a lot of knowledge about fibromyalgia, and some may even have outdated notions of the condition. If your health insurance plan allows, switch to a new doctor who is more suitable. Even if a doctor doesn't have a lot experience with fibromyalgia cases, a doctor who is interested in helping you and willing to learn more can be a good advocate for you.

  If you feel that you aren't making progress toward a final diagnosis, it may be time to find a new doctor. Contact your health insurance plan to find out what doctors you're allowed to see. Ask friends and family for referrals. Contact the leaders of fibromyalgia support groups in your area for their recommendations. The National Fibromyalgia Association keeps a directory of support groups on its Web site.

• Build a good relationship with your doctor. Whether with your current doctor or a new doctor, build a good partnership. Be open and honest with your doctor about concerns you may have about the diagnosis process. Avoid coming to appointments angry or making accusations. Tell your doctor you're frustrated and ask how you can help move things along. Ask your doctor to be open about what's frustrating or puzzling about your symptoms.

As you work with your doctor, also take steps to take care of yourself so that you can cope with the uncertainty of not having a definitive diagnosis. Reduce stress by taking time for yourself. Engage in stress-free activities, such as massage and deep breathing. Eat a healthy diet with a variety of fruit and vegetables. Tell your doctor if you're having trouble sleeping.