Diagnosing fibromyalgia (FM) can be challenging. It’s not uncommon for someone to ask their healthcare provider if they could have the condition only to have the suggestion waved off. What’s going on?
Fibromyalgia is a common chronic pain condition that involves fatigue, cognitive dysfunction, sleep disruptions, and many other possible symptoms. When you bring up a possible FM diagnosis with your healthcare provider, you may expect immediate testing to confirm or deny that you have it. But with fibromyalgia, it’s not that simple.
Reasons to Delay Testing
Your healthcare provider may have valid reasons to delay testing you for FM. The first is that your symptoms may not have lasted long enough yet. Under the fibromyalgia diagnostic criteria, symptoms need to have been present and consistent for at least three months.
Another reason is that many healthcare providers aren’t comfortable with the diagnostic process. You may want to ask for a referral to a specialist who’s more experienced with it. A fibromyalgia diagnosis takes a lot of testing followed by a couple of questionnaires.
Who Diagnoses Fibromyalgia?
The best healthcare providers for diagnosing (and treating) fibromyalgia are rheumatologists, followed by neurologists, although some primary care practioners are comfortable with it, as well. It can take time to find a good FM practitioner .
Diagnosing Fibromyalgia
Fibromyalgia is a chronic condition that causes widespread pain, and various other symptoms such as sleep disruptions, fatigue, depression, and anxiety. It can take time for a person to be diagnosed with FM, often up to two years. This is due to the complexity of diagnosing the disease. In the past, one of the ways fibromyalgia was diagnosed was by various “tender spots” on the body. However, this proved not to be very helpful in diagnosing FM, as it was hard for the practitioner to administer the exam, and also left out other important symptoms such as sleep issues.
In 2010 and again in 2016, the American College of Rheumatology (ACR) updated its diagnostic criteria to create a more accurate, faster, and simplified process. The latest 2016 criteria says that a person has fibromyalgia if all of the following three conditions are met:
- Either a score of 7 or greater on the widespread pain index (WPI) with a symptom severity score (SSS) of 5 or greater OR a WPI of 3 to 6 and an SSS of 9 or greater.
- Generalized pain in four of five areas on the body (excluding the jaw, chest, and abdomen).
- Symptoms present for three months or longer.
As a result of these criteria, the diagnosis of fibromyalgia is no longer a “diagnosis of exclusion” where you would have to be tested for a long list of other diseases to rule out FM. However, the diagnosis does not “exclude the presence of other clinically important illnesses.” So you can have overlapping conditions with FM such as sleep apnea and micronutrient deficiencies.
Unfortunately, despite these new criteria, patients are still being tested for other diseases before being diagnosed and medical providers are still using the outdated and no longer recommended pressure point exam. This leads to continued misdiagnoses and delays in treatment.
Tests to Rule Out Other Conditions
Since your healthcare provider may want to rule out a dozen or more conditions, testing can be extensive and often includes blood tests and imaging. Fortunately, some blood tests can help rule out numerous diseases.
Fibromyalgia typically involves low-grade inflammation or no inflammation at all, whereas many diseases with similar symptoms are characterized by high inflammatory levels. Tests for inflammatory markers are often among the first performed when you go in with widespread pain and other possible FM symptoms. They include:
- C-reactive protein (CRP): The liver produces CRP in response to inflammation, so high levels are typical in people with inflammatory diseases such as rheumatoid arthritis.
- Erythrocyte sedimentation rate (ESR or sed rate): This measures how quickly red blood cells settle at the bottom of test tube, which can indicate high levels of inflammation. ESR is a common test for vasculitis or inflammatory bowel disease.
You may also have blood tests for:
- Autoantibodies (indicators of autoimmune disease)
- Thyroid and parathyroid hormone levels
- Adrenal gland function
Imaging studies that may be performed include:
- Magnetic resonance imaging (MRI)
- Computed tomography (CT) scans
- X-ray
- Ultrasound
Other kinds of tests may include:
- Lumbar puncture (spinal tap)
- Nerve function tests (electromyography and nerve conduction studies)
- Sleep study
- Skin or muscle biopsy
You will likely only need a fraction of these, and testing will probably be done in several rounds. It’s common for healthcare providers to start with tests that have a broad significance and base further testing on those results.
For example, if your first round of tests shows you don’t have elevated inflammatory markers, there’s probably no need to test for antibodies indicating autoimmune diseases with high levels of inflammation.
When to Call a Healthcare Provider
Any time you’re having unexplained pain, severe fatigue, or cognitive changes, you should see a medical professional. Tell your healthcare provider all of the symptoms you’ve been having, even if they don’t seem related.
Symptom Criteria
After symptoms have persisted for at least three months, it’s time to start looking at FM diagnostic criteria.
First, you need to have generalized pain in four of five regions. Those regions are the four quadrants of your body plus the “axial” region, which is along the spine. This criterion specifically excludes the jaw, chest, and abdomen.
Next, it’s time for the two FM diagnostic questionnaires—the Widespread Pain Index (WPI) and the Symptom Severity Scale (SSS).
Widespread Pain Index
By definition, fibromyalgia pain is widespread. The WPI includes 19 places on the body and asks you whether you’ve had pain there in the past week. You get a point for every “yes,” with the left and right sides of most areas counted separately. The areas are:
- Jaw (both sides)
- Neck
- Shoulder girdle (both sides)
- Upper arm (both sides)
- Lower arm (both sides)
- Upper back
- Lower back
- Chest
- Abdomen
- Hip/buttock/upper thigh (both sides)
- Upper leg (both sides)
- Lower leg (both sides)
Your healthcare provider may also ask you to characterize your pain. For example, is it dull, sharp, electrical, stabbing, etc.?
Symptom Severity Scale
The SSS has part A and part B. Part A measures three key FM symptoms and Part B looks at other somatic (physical) symptoms you may have. The Part A symptoms are nearly universal among people with FM:
- Fatigue: The fatigue of FM is often described as a persistent mental and/or physical exhaustion. While severities vary, it can become severe and debilitating and isn’t resolved with sleep.
- Waking unrefreshed: People with FM rarely, if ever, wake up feeling rested and refreshed. Instead, they may feel as if they’ve slept very little or not at all.
- Cognitive symptoms: Also called “fibro fog,” the cognitive symptoms of FM can include short-term memory problems, directional disorientation, mental “lags,” inability to multitask, and difficulty with simple math or remembering common words (especially nouns).
For each of these, you’ll be asked to rate your symptoms over the past week on a scale from zero to three.
| Symptom Severity Scale: Part A Answers | |
|---|---|
| 0 | No problem |
| 1 | Slight or mild problems; generally mild or intermittent |
| 2 | Moderate; considerable problems; often present |
| 3 | Severe; pervasive, continuous, life-disturbing problems |
For Part B, you’ll be asked whether, in the past six months, you’ve had:
- Pain or cramping in the lower abdomen
- Depression
- Headache
You’ll be given one point for each “yes.”
Totaling the Score
Once you’re done with this process, you’ll have two scores, a WPI of between zero and 19 and an SSS of between zero and 12. A diagnosis of FM can be made with two different combinations of scores:
- WPI = at least 7 and SSS = at least 5
- WPI = 4 to 6 and SSS = at least 9
How to Talk to Your Healthcare Provider
The symptoms of FM are often life-altering, and going through this long diagnostic process before getting any solid answers can be really hard. And once you get a diagnosis, you’ll need to start making treatment decisions.
You’re bound to have a lot of questions and may not even know where to start. This guide can help you prepare for your healthcare appointment so you can make the most of your limited time.
