What are the worst case scenarios for myofascial pain syndrome?

This post is an excerpt from my book-length tutorial about trigger points (muscle knots). I heavily revised these sections over the last couple months, inspired by comments made by Dr. Mark Crislip at the Science-Based Medicine conference last July, and by a growing awareness of the importance of pain system dysfunction — the idea that, regardless of the source, severe and chronic pain can lead to a general breakdown in pain perception. — Paul

Sometimes people have a hard time believing that their pain could be caused by trigger points because it’s just so bad. How could it be caused by “just” muscle? It’s important to understand that nearly any amount of pain and misery is possible with trigger points, and with the human nervous system in general. There are three noteworthy kinds of worst case scenarios:

1. unusually numerous and/or severe trigger points (being a “triggery” person)
2. rare but extreme cases where trigger points seem to “take over” and the diagnosis of myofascial pain syndrome no longer seems adequate
3. isolated but fast and savage trigger point activation [note: further discussion of this concept is not covered in this post]

Given the global reach of this tutorial and the ease of digital communications, I have had the opportunity to talk to people suffering from more horrible trigger point problems than I would ever have guessed existed. Working in relative isolation here in Vancouver in private practice, I might well have never come across such cases, even after decades of clinical work. But, thanks to this website, I have heard tales of the worst of the worst. And the extremes are surprising.

Unfortunately, nearly any amount of pain and misery is possible with trigger points.

For instance, I recall a reader from one of Canada’s eastern Maritime Provinces who, after giving birth, developed an alarming collection of hard nodules in her abdominal musculature which seemed to have most of the typical diagnostic signs and symptoms of trigger points. And yet there was nothing typical about their severity: they caused intense and constant pain, shortening her muscles so much that she could barely stand up straight, as though her body was doing a permanent sit-up. These trigger points didn’t go away in response to any therapy she tried, and she had certainly tried a lot of therapies before she spoke to me. She had been in pain like that for more than three years when I spoke to her.

As severe as it was, though, the severity was really the only unusual thing about it — in all other respects it seemed like a typical case of trigger point pain. For instance, the problem remained “regional” (it hadn’t spread throughout her body) and her trigger points acted like trigger points — just really horrible ones. She was a classic case of a “triggery” patient: someone whose muscles were extremely prone to extreme trigger-point formation for unknown reasons. There was probably some X factor in her case, something about her that predisposed her muscles to this fate. But her doctors had certainly cleared her of any obvious diseases, and having X factors that complicate myofascial pain syndrome is the norm. Almost every case of myofascial pain syndrome is aggravated and sustained by poorly-defined X factors. The problem is that, in her case, she had some crazy “perfect storm” that resulted in one of the worst cases I’ve ever heard of — one of the worst that was still clearly myofascial pain syndrome, anyway.

Her trigger points shortened her abdominal muscles so much that she could barely stand up straight, as though her body was doing a permanent sit-up.

There’s another way to be “triggery”: instead of being bizarrely intense, trigger points can also be bewilderingly numerous — an endless plague of more or less average trigger points. This is particularly striking in the young, who seem prematurely aged by the profusion of pain and stiffness. I have seen many minor examples of this in my own massage practice, and heard about more dramatic cases from readers around the world. They are characterized by common symptom themes — for instance, an area like the low back, or the right side of the body, may consistently be the most troubled — but also by a steady supply of unpleasant surprises in other areas of the body, and constantly shifting cravings for pressure in different location.

Such patients often present a great clinical challenge for a massage therapist, in that they seem to want to be massaged everywhere at once, and no sooner do you arrive in one area than they declare that the target has moved. In many cases, I suspect it’s not that therapist and patient are struggling to “find the right spot,” because there is no one “right” spot. Instead, the patient’s priorities and cravings are shifting rapidly: as helping hands “take the edge off” one spot, the patient’s nervous system decisively announces the next-most-desperate area requiring attention. A perfect analogy is the way that a back scratch can seem just perfect one moment, but then the next moment there’s a great urgency for the scratch to be “just a little lower.” I think the same thing happens in triggery patients, but the pain gives it a disturbing urgency. If you consider how strong the “just a little lower” feeling can be, how strong must it be in someone experiencing serious pain? No wonder it sometimes seems as though such a patient can’t be satisfied!

As bad as this scenario can be, I’ve heard of even worse. Unfortunately, although it’s rare, there seem to be some people who’s experience of myofascial pain is defined by trigger points that are both extremely numerous and intense. Push far enough along the spectrum of badness in that direction, and the diagnosis of myofascial pain syndrome ceases to be meaningful.

Rare but extremely severe cases of myofascial pain syndrome

Turn the volume up loud enough on an average sound system, and the music stops being music.

That seems to happen to a few unlucky people who start out being merely “triggery” — a bad enough situation to begin with. The pain signals become so loud and overwhelming that they lose their meaning, and the patient is crippled by vicious and widespread chronic pain, just as severe as painful diseases like rheumatoid arthritis or complex regional pain syndrome. In these patients, trigger points (muscle knots) seem to have taken over the whole body, the problem changed into something altogether different in the process — a whole that is greater and nastier than the sum of its parts.

In July 2009 in Las Vegas I encountered an interesting analogy to this puzzle at the Science-Based Medicine Conference. Mark Crislip, MD, an infectious-disease specialist from Portland (and host of the popular podcast Quackcast), gave a superb presentation about the hypothesis of “chronic Lyme disease.” He made a strong case that it is a misnomer, a meaningless diagnosis, an overconfident attempt to define a problem that cannot actually be defined.

Some patients do seem to have some kind of post-infection meltdown. They don’t still have an infection any more in any sense that we understand infection. But someone is going to have to explain these patients to me someday.

And that is precisely how I feel about patients with unusually severe chronic trigger point pain: I don’t think that they have myofascial pain syndrome in the same sense that we understand normal muscle pain — clearly their cases have gone beyond that, but just as clearly they have had “some kind of meltdown,” and “someone is going to have to explain” them to me someday. Although these cases seem to have their origins in the same kind of myofascial trigger points that Travell and Simons described so thoroughly, it is equally clear that this can lead to a new kind of predicament in the body, one that is more scientifically puzzling than muscle pain (as if we needed any additional mystery here).

All painful conditions share some characteristics, regardless of the source of the pain. As with any chronically painful condition, the pain of trigger points probably becomes difficult to distinguish from wholesale malfunction of the “pain system” — the sum total of all the neurology and psychology that controls pain perception. Speaking generally, then, what is strange and extreme and difficult about these patients may “simply” be the nature of pain system dysfunction. It isn’t so much that they have severe trigger points (though the probably do), but that their pain systems have been “fried” by the experience.

Pain is informative — or rather, it should be informative. It is supposed to tell us about problems and threats, teach us what to avoid, tell us when to lie still. Pain system dysfunction begins wherever pain starts to lose meaning, and that can begin quite early in any painful problem. Anyone who’s had a headache for a few hours will be happy to tell you that they’re not learning anything useful from the pain!

Pain system dysfunction is peaking whenever pain perception becomes seriously mismatched to reality: when non-painful stimuli become painful, when “everything” starts to hurt regardless of whether there is anything wrong or not, when the volume of pain is out of proportion to the severity of anything actually happening in the tissues. In such situations, it is no longer your “tissues” that are hurting, but the nervous system itself. The pain has become autonomous.

And yet there could well still be something wrong in the tissue as well — which tends to ensure the persistence of the meltdown. Imagine waving a magic wand over such a patient and instantly restoring normal pain perception: what would the patient perceive? Perfectly healthy, painless tissues? Not likely! Probably pain would improve significantly, but the restored nervous system would still be obliged to report a number of problems: either the original tissue pain, and/or new tissue distress that arose from the terribly dysfunctional situation. Having scrambled pain perception is probably hazardous in itself.