David Baxter PhD
Late Founder
Fibromyalgia symptoms or not? Understand the fibromyalgia diagnosis process
Mayo Clinic
Aug. 27, 2009
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 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 rheumatoid arthritis, hypothyroidism and mononucleosis 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, fibromyalgia appears to be linked to changes in the way the brain processes pain signals.
Because there is no test for fibromyalgia, your doctor must rely solely on your symptoms to make a diagnosis. Unfortunately, fibromyalgia symptoms may vary widely from one person to the next.
The American College of Rheumatology (ACR) guidelines for diagnosing fibromyalgia require widespread pain throughout your body for at least three months. "Widespread" is defined as pain on both sides of your body, as well as above and below your waist.
In addition, the ACR guidelines direct doctors to test 18 points on your body for tenderness. ACR criteria state that pain at 11 of the points may indicate fibromyalgia. Some specialists question whether these guidelines are useful because fibromyalgia symptoms may come and go, which could affect the number of tender points that would be painful during the test.
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
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.
Testing for other conditions ? such as lupus, multiple sclerosis or sleep apnea ? may make less sense to you. But fibromyalgia can mimic or even overlap many other conditions. Talking openly with your doctor about your concerns 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. The following tips may help.
Ask questions
Ask your doctor to explain each disease and condition he or she is testing for and why the test is necessary. Does your doctor believe your symptoms more closely match another disorder? Or will the test simply rule out a condition that has similar symptoms? When you better understand the diagnostic process, you'll feel less frustrated.
Keep records
Every time you have a test, ask for a copy of your test results. Bring this paperwork with you when you see a new doctor or specialist. 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.
Build a good relationship
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.
Take care of yourself
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. Try to:
Mayo Clinic
Aug. 27, 2009
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 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 rheumatoid arthritis, hypothyroidism and mononucleosis 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, fibromyalgia appears to be linked to changes in the way the brain processes pain signals.
Because there is no test for fibromyalgia, your doctor must rely solely on your symptoms to make a diagnosis. Unfortunately, fibromyalgia symptoms may vary widely from one person to the next.
The American College of Rheumatology (ACR) guidelines for diagnosing fibromyalgia require widespread pain throughout your body for at least three months. "Widespread" is defined as pain on both sides of your body, as well as above and below your waist.
In addition, the ACR guidelines direct doctors to test 18 points on your body for tenderness. ACR criteria state that pain at 11 of the points may indicate fibromyalgia. Some specialists question whether these guidelines are useful because fibromyalgia symptoms may come and go, which could affect the number of tender points that would be painful during the test.
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
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.
Testing for other conditions ? such as lupus, multiple sclerosis or sleep apnea ? may make less sense to you. But fibromyalgia can mimic or even overlap many other conditions. Talking openly with your doctor about your concerns 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. The following tips may help.
Ask questions
Ask your doctor to explain each disease and condition he or she is testing for and why the test is necessary. Does your doctor believe your symptoms more closely match another disorder? Or will the test simply rule out a condition that has similar symptoms? When you better understand the diagnostic process, you'll feel less frustrated.
Keep records
Every time you have a test, ask for a copy of your test results. Bring this paperwork with you when you see a new doctor or specialist. 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.
Build a good relationship
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.
Take care of yourself
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. Try to:
- Manage your stress with strategies such as deep-breathing exercises
- Take time for yourself with a massage or some other relaxing treat
- Eat a healthy diet with a variety of fruits and vegetables
- Exercise regularly, but don't overdo it
- Get plenty of sleep and rest
- Goldenberg DL. Differential diagnosis of fibromyalgia. UpToDate Inc.. Accessed June 4, 2009.
- Q&A: Fibromyalgia. National Institute of Arthritis and Musculoskeletal and Skin Diseases. Q&A Fibromyalgia Accessed June 3, 2009.
- Fibromyalgia. American College of Rheumatology. Patient Education - Fibromyalgia Accessed June 4, 2009.
- 1990 criteria for the classification of fibromyalgia. American College of Rheumatology. 404: Page Not Found Accessed June 4, 2009.
- Assessment of a patient with fibromyalgia. In: Firestein GS, et al. Kelley's Textbook of Rheumatology. 8th ed. Philadelphia, Pa.: W.B. Saunders Co.; 2008. http://www.mdconsult.com/das/book/b...-u1.0-B978-1-4160-3285-4..10038-5--s0170_1097 Accessed June 4, 2009.
- Wallace DJ, et al. The fibromyalgia consultation and differential diagnosis. In: Fibromyalgia: An Essential Guide for Patients and Their Families. New York, N.Y.: Oxford University Press; 2003:65.
- Fransen J, et al. Getting the diagnosis and finding a medical care provider. In: The Fibromyalgia Help Book: Practical Guide to Living Better With Fibromyalgia. St. Paul, Minn.: Smith House Press; 1996:31.
- Fransen J, et al. Building a relationship with your physician. In: The Fibromyalgia Help Book: Practical Guide to Living Better With Fibromyalgia. St. Paul, Minn.: Smith House Press; 1996:59.
