Why Won't Your Healthcare Provider Diagnose Fibromyalgia?

Diagnosing fibromyalgia (FM) is difficult, and 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. On the other hand, some practitioners don't believe in fibromyalgia, so they may refuse to consider it. However, that's become less of a problem as research has piled up showing that FM is a very real condition.

Assuming your healthcare provider is among the majority who now accept the reality of FM, they still may have reasons not to start the testing process right away. 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. That testing isn't for FM itself, but to rule out other possibilities. That's because fibromyalgia is a diagnosis of exclusion.

A Diagnosis of Exclusion

So far, medical professionals haven't come up with any objective laboratory or imaging tests that can reliably diagnose fibromyalgia, and until they do, it will remain a diagnosis of exclusion. That means other conditions that may cause the same symptoms you're experiencing must be tested for and eliminated before your healthcare provider diagnoses FM.

That can take a lot of time and testing, especially since some illnesses with similar presentations can be difficult to diagnose in their own right. In some cases, it may take multiple rounds of testing to rule them out with certainty.

Depending on your symptoms, medical history, and findings of a physical exam, your healthcare provider may want to test you for some of these conditions:

• Addison's disease
• Guillain-Barré syndrome
• Hyperparathyroidism
• Hypothyroidism
• Lupus
• Lyme disease
• Multiple sclerosis (MS)
• Myasthenia gravis (MG)
• Osteoarthritis (widespread)
• Polymyalgia rheumatica
• Post-traumatic stress disorder (PTSD)
• Rheumatoid arthritis
• Schwartz-Jampel syndrome
• Scleroderma

Complicating the process, FM is often secondary to other pain conditions or autoimmune diseases, so a diagnosis of one of these conditions doesn't always rule out FM. That's when a specialist is really important, because they're more likely to have the experience to figure out what all is going on.

FM is also likely to involve overlapping conditions, including irritable bowel syndrome, migraine, and sleep apnea. If you're having symptoms from these or other undiagnosed overlapping illnesses, it may change or expand the list of conditions you're tested for.

Tests to Rule Out Other Conditions

Since your healthcare provider may need 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 or lupus.
• 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 osteoarthritis, vasculitis, or inflammatory bowel disease.
• Plasma viscosity: Inflammation thickens plasma, which is the liquid part of your blood. This test detects inflammation by measuring how thick the plasma is.

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.

Symptom Criteria

Once exclusionary testing is done and 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.

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.

Fibromyalgia Healthcare Provider Discussion Guide

Get our printable guide for your next healthcare's appointment to help you ask the right questions.

Download PDF

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Frequently Asked Questions

Am I more likely to suffer from fibromyalgia if I have certain characteristics?

Possibly, yes. Fibromyalgia is most commonly diagnosed in middle-aged women, though anyone can have it. A family history of fibromyalgia may also mean you are more likely to have it.

How is fibromyalgia treated?

There are a lot of different treatment options for fibromyalgia symptoms, including medications such as analgesics, antidepressants, and anticonvulsants; occupational therapy; and lifestyle changes such as diet and weight loss.

A Word From Verywell

This diagnostic process may seem strange, but research shows that it does work for accurately diagnosing fibromyalgia. A correct diagnosis is key for you to get the right treatments, and as grueling as the process can be, it's worth it if it means understanding what's going on in your body and, especially, getting on the path toward feeling better and getting back to your life.