Diagnosing fibromyalgia is a complex — and often lengthy — affair. Sure, fibromyalgia has some characteristic symptoms, but widespread pain, fatigue, difficulty sleeping, and mood swings can also be caused by any number of other medical conditions — which people with fibromyalgia may actually also have, because "misery loves company" and fibromyalgia is often comorbid with other disorders. What's more, the severity of fibromyalgia symptoms can fluctuate greatly, meaning you may just feel "nearly OK" when you have that doctor's appointment.
Research shows that something called an FM/a test, which uses a sample of your blood plasma and peripheral blood mononuclear cells (PBMC) to look at your cytokine levels, holds potential. This is because decreased cytokines could just be a "marker" for fibromyalgia. We're still a long way off from a single test that can confirm fibromyalgia or rule it out, however. Because the functional pain disorder appears to be caused by changes within the nervous system that make patients hypersensitive to pain, no physical exam or blood test can diagnose it.
What can you expect from the diagnostic process, then?
Older and newer diagnostic guidelines for fibromyalgia: What do you need to know?
Besides widespread pain, fatigue, poor sleep quality, and cognitive and mood changes, so-called "tender points" are one of fibromyalgia's most defining features. When someone touches these tender points, a person with fibromyalgia will experience a rather heightened pain response — and perhaps scream out in agony.
Older guidelines tested 18 potential tender points — the diagnosing physician would apply pressure to them — to determine whether the patient may indeed suffer from fibromyalgia. To "qualify", the patient had to respond to a minimum of 11 tender points. Though the presence of tender points is indeed an indicator of fibromyalgia, it is important for doctors to be aware of the fact that these tender points don't remain constant. A spot that hurts today may not tomorrow, and vice versa, and many doctors also have little idea how to test whether a particular point is really "tender".
If you believe you may be struggling with fibromyalgia and you see a doctor for diagnosis, your physician may now look for the following:
- Chronic (defined as lasting at least three months) pain over large areas of your body
- Symptoms known to be strongly associated with fibromyalgia — not sleeping well, feeling extremely fatigued much of the time, and cognitive changes such as mood swings and short-term memory loss
- Tender points — but instead of just testing what hurts now, your doctor will ask you where you have felt special pain in the last seven days
These symptoms cannot be explained by other medical conditions if you are to receive a fibromyalgia diagnosis, so your doctor will seek to rule other possible explanations in or out. The conditions your doctor will look at, because they sometimes cause symptoms also associated with fibromyalgia, include:
- Rheumatic conditions like Sjogren's syndrome, lupus, and of course rheumatoid arthritis, osteoarthritis (caused by bone wear), ankylosing spondylitis (inflammatory arthritis that mainly affects the spine and may cause vertebrae to become fused), and polymyalgia rheumatica. Polymyalgia rheumatica leads to a sudden onset of widespread pain, just like fibromyalgia, and also causes severe stiffness.
- Nobody likes to have their symptoms dismissed as "all in the head", but it is a fact that mental health disorders, including depression and anxiety, can cause physical symptoms such as pain and fatigue.
- Hypothyroidism, in which you essentially have a thyroid hormone deficiency, is well known to cause fatigue and weight gain. Not as many people are aware of the fact that it can also induce pain.
- Neurological disorders like multiple sclerosis and myasthenia gravis can also produce fibromyalgia-like symptoms.
Tests you may undergo while being diagnosed with fibromyalgia
Having a whole battery of blood tests may scare you a little, as lab technicians may need to take several vials of blood — but be aware that having your blood taken probably won't take more than a few minutes. Here are the blood tests commonly performed while you are being diagnosed with fibromyalgia:
- A complete blood count, which looks at all the components of your blood — your red blood cells, white blood cells, and platelets.
- Erythrocyte sedimentation rate (ESR). This test looks at inflammatory activity, and in your context specifically seeks to rule polymyalgia rheumatica in or out.
- A C-Reactive protein test again looks for inflammation.
- A thyroid function test determines whether you have hypothyroidism.
- An antinuclear antibody (ANA) looks for autoimmune conditions, including rheumatoid arthritis and lupus.
- You may be tested for vitamin D deficiency, because this is frequently present in fibromyalgia patients.
In addition to blood tests, people being assessed for fibromyalgia will likely undergo a thorough physical examination, which will focus on the joints and muscles, X-rays, a neurological examination, and perhaps even a sleep study. Sleep studies are useful for people who may have sleep apnea and other conditions that disrupt their sleep.
As always, talking to your doctor forms an important component of the diagnostic process too. You'll be asked to describe your symptoms as well as you can, including how severe they are, how long you have been suffering from them, and how they affect your life. You'll be asked about your personal and family medical history. Once your doctor is pretty sure you have fibromyalgia, they will assess where you rank on the "widespread pain index score".
What can you do to help your doctor during the diagnostic process — or to self-diagnose?
Commit to writing a daily "pain log" wherein you detail where you experience pain, how the pain feels, how long the pain lasts, and any activities you notice that seem to make the pain worse or better. You can also describe how you're sleeping — that it's hard to fall asleep, you're woken up by pain several times a night, or you don't feel rested even after apparently sleeping all night, for instance — in this log. Keeping an eye on other symptoms associated with fibromyalgia, like feeling fatigued, finding it hard to keep up with conversations, losing or forgetting things, and experiencing mood swings, can also be helpful to both you and your doctor.
Keeping this kind of journal takes the guesswork out of questions your doctor will definitely be asking you. Rather than saying you "think" you've experienced these symptoms for at least three months, or guessing that you've felt fatigued more days than not, you'll simply be able to whip your notebook out and show your physician how you have been doing. This can speed your diagnosis up.