How "Mysterious" is Fibromyalgia Pain?

Is it Still a "Poorly Understood Illness"?

SCIEPRO/Getty Images

"Fibromyalgia is a mystery."

"No one really understands where the pain comes from."

"Fibromyalgia is a poorly understood condition."

You see these kinds of statements about fibromyalgia all the time, and they may hinder your understanding of what's going on in your body. That may make you feel less in control and hamper your ability to feel better – or convince you that you can't.

A study published in the International Journal of Rheumatology in late 2014 (cited below) compared ratings on what's called the "Mystery Scale" for Pain Beliefs and Perceptions between people with fibromyalgia and those with rheumatoid arthritis (RA).

RA isn't particularly mysterious. It's generally described clearly and concisely as an autoimmune and inflammatory type of arthritis. So, not surprisingly, the fibromyalgia group scored much higher on the Mystery Scale. The researchers said this may be an area that needs to be addressed by doctors because it reflected a poor understanding of the condition.

Is Fibromyalgia Really Mysterious?

We certainly don't know as much about fibromyalgia as we do RA or other pain common conditions such as lupus or multiple sclerosis. However, we've learned a lot in the past couple of decades and your pain may not be as mysterious as you think.

The root of the problem is that fibromyalgia pain isn't like the most common types of pain. When you go to the doctor for common pain, you point to where it hurts and he or she examines that area for damage, from either injury or disease. That's pretty straight forward.

When you have fibromyalgia pain, though, it's widespread. It might move around your body as well, causing stabbing pains near your breastbone one minute and your lower abdomen the next. It's usually a dead end for a doctor to look at the place that hurts, especially if you hurt everywhere.

That's because, according to the prevailing theory, our pain comes from a disordered nervous system.

Right about there is where a lot of people's eyes glaze over, so let's take a look at what that means in a simple, straight-forward way.

Understanding Nervous-System-Based Pain

Your nervous system is made up of your brain, spinal cord and peripheral nerves. (Peripheral, in this case, means away from the spinal cord.)

Take a good look at the picture at the top of this article – it shows how nerves run all through your body, from larger ones along the core of your body to smaller ones in your hands and feet.

When there's a problem at one point along the nerve, it can cause pain there as well as elsewhere along the nerve. For example, back in college I had carpal tunnel syndrome, which involves nerve compression in the wrist. My wrists and hands hurt the worst, but I also had pain in my elbow and shoulder, along the path that nerve traveled to get back to the center of my body. People with sciatic nerve pain, which originates in the spinal area, can have pain all the way down their leg.

If a dysfunction at a single joint or narrow passageway can cause pain along an entire limb, consider that in fibromyalgia, the entire nervous system is dysfunctional. Now that all-over, randomly moving-about pain makes more sense, doesn't it?

It's not so mysterious now, is it?

Pain Signals: Two-Way Traffic

When you touch something, your nerves send signals to your brain about texture, consistency, temperature, etc. Most people know that. But did you know that your brain sends information back to your nerves?

That information may be, "Stop touching that thing! It's dangerous!" Or it may be, "Hmm, that's a new sensation but it's not painful. It could be X, or maybe Y … I'm not quite sure yet."

Think of nerve signals as emails, and pain signals as emails marked "urgent." Imagine you're checking your inbox and suddenly three urgent messages come through.

Wow, that looks like a big deal, right? You're obviously going to kick into high gear and deal with those right away.

In fibromyalgia, nerves may send excess pain messages to your brain, or your brain thinks something that's mildly painful actually hurts worse than it does. The brain then responds in excess and puts the body into a higher alert mode than is necessary.

The end effect is that the pain you perceive, after all that back and forth, is amplified. Your brain "turns up the volume." This is called hyperalgesia, which means "heightened pain." We also have a pain type called allodynia, which is pain from stimuli that shouldn't cause pain.

These pain types can take a little uncomfortable pressure from your waistband and turn it into an intolerable burning swath across your abdomen. In someone else, it would take tissue damage to cause that kind of pain.

No matter where your pain comes from, it involves your nerves. You may have a bad back, or an old knee injury that gives you problems. The thing is, whether it's a joint, a bone, a muscle, or connective tissue, it communicates pain to the brain via nerves. When you have fibromyalgia, all of your pain and all of your unpleasant sensations are heightened.

We don't yet know everything about our pain, but as you can see, we're getting a handle on it. A growing body of research provides new information on continuous basis.

Why the "Mystery" Label, Then?

Fibromyalgia was a huge mystery for a long time. (See: A History of Fibromyalgia.) Even after decades of research, we're still sorting out a lot of issues: What triggers it? How can we treat it better? Can it be cured? Is there an objective diagnostic test?

What many people don't realize, though, is that we have those questions about a lot of illnesses – even some that, to the public, appear to be much more established.

Take multiple sclerosis, for instance: we know what physiological mechanisms cause the symptoms, but we don't know what sets those mechanisms in action (the cause of the illness); there's no universally effective treatment and no cure; there's not a single, definitive diagnostic test. The same can be said for many illnesses, especially neurological ones.

The statements about fibromyalgia pain being mysterious, or about this being a poorly understood illness, are in part left over from when we didn't know as much. It's more of a perception issue than a fact.

What this means for you is that you can understand your pain, and once you understand it, you're better prepared to deal with it emotionally, make informed decisions about treatments and lifestyle changes, and communicate with others about your illness. You'll have a lot more success if you focus on what we do know rather than what we don't.


Cassisi G, et al. Reumatismo. 2014 Jun 6;66(1):72-86. Pain in fibromyalgia and related conditions.

Clauw DJ, et al. Mayo Clinic proceedings. 2011 Sep;86(9):907-11. The science of fibromyalgia.

Ferrari R, Russell AS. International journal of rheumatology. 2014;2014:593507. Pain mystery score beliefs: a comparison of fibromyalgia and rheumatoid arthritis.

Continue Reading