Fibromyalgia (FM) is a chronic condition where there is widespread / whole body pain that is often difficult to diagnose. Some patients may spend years of going to different doctors, undergoing many tests (of which most, if not all, are “negative”), and they may be diagnosed with different conditions such as rheumatoid arthritis, hypothyroidism, or mononucleosis before a diagnosis of FM is finally given. Needless to say, this process can be very frustrating!
The reason for this dilemma is that there is no single diagnostic test (blood test, x-ray/image finding, etc.) that verifies the diagnosis of FM, leaving doctors in a position to “rule out” all other possible “diagnose-able” conditions first, before considering FM as “the” diagnosis. Another challenge is the fact that FM symptoms vary widely from one person to the next and even vary within the same person at different times of the year. There are a few “guidelines” doctors can use to help secure the diagnosis of FM.
One such guideline is from The American College of Rheumatology (ACR) which requires that “widespread” pain be present throughout the body for at least 3 months (“widespread” is defined as pain on both sides of the body, above and below the waist). The ACR also has identified 18 points on the body of which at least 11 of the 18 “tender points” must be present to secure the diagnosis of FM. There is debate as to the accuracy of this rather stringent criteria as FM symptoms can come and go and vary, making the 11 of 18 tender point findings sometimes change between visits. Hence, widespread pain above/below the waist on both left/right sides of the body for at 3 months has become a more accepted indicator for diagnosing FM.
Yet another challenge in pinning down the diagnosis is that the FM sufferer may experience signs and symptoms seemingly unrelated to FM, such as stomach ache/digestive problems or headaches. This can lead the doctor down other paths before considering FM as a diagnosis.
Fibromyalgia can be primary (no other condition caused it) or secondary (other condition(s) lead to the development of FM). Hence, the diagnosis process focuses on identifying conditions which can be identified through standard diagnostic tests, often overshadowing the diagnosis of FM. Testing for conditions such as lupus, multiple sclerosis, sleep apnea, diabetes, Crohn’s Disease, and/or others, often makes sense to both you and your doctor, but adds to the delay in diagnosing FM. Here are some suggestions to help your doctor through this diagnostic maze:
Ask questions: Ask about what each test is for and what the next plan is if the tests are negative. By increasing your understanding, this will reduce your frustration in this process.
Keep records: Obtain a copy of EVERY test you have and share the information with any new doctor or specialist. This can save time and money!
Find the “right” doctor: Find a doctor you can trust and “talk to.” Not all doctors “believe” FM exists and some are close minded to considering it. Try to locate a doctor with a lot of experience with FM cases and is willing to “…work with you.”
Build a good relationship: Be open, honest and avoid anger, skepticism and don’t be confrontational. Be upfront about what is frustrating you about your symptoms.
Take care of yourself: Ultimately, “success” of treating FM demands a “team” effort between you and your doctor. Managing stress (eg., deep breathing exercises), obtain care that works (eg., chiropractic, massage), eat a healthy diet (eg., gluten-free), exercise regularly but don’t overdo it, and get plenty of sleep and rest.