Massage therapy for fibromyalgia (Member Post)

A bit more about fibromyalgia

Fibromyalgia is a condition of unexplained widespread body pain and fatigue. About 1–2% of the population suffer this way — a huge number!1 Its existence used to be controversial, but that is fading now: it is a widely recognized condition. Long Covid helped with that, raising the awareness of how physiology sometimes goes haywire after infections.

Unfortunately, “recognition” is often about as far as it goes: ignorance, mystery, and controversy still swirl around fibromyalgia like a bad small. Just one example: it’s a myth that it’s a diagnosis of exclusion. It has specific diagnostic criteria that can be used to rule it in. But it continues to be a waste-basket diagnosis in practice, hence the perpetual confusion.

For a lot more information about fibromyalgia, see my detailed guide — a book in progress, albeit very slow progress — which also contains a couple members-only sections, which are already unlocked for you if you’re reading this (and that link will take you there). (This post is not an excerpt from that guide, which only briefly addresses the role of massage. It is an excerpt from another one, my big guide to the science and myths of massage therapy.)

My personal experience with fibromyalgia and massage

Full disclosure: I have some skin in this game, which is always a double-edged sword in science communication, both adding value and subtracting objectivity. But I have been one of those fibromyalgia and/or ME/CFS weirdos myself since 2015, and I’ve also had a lot of massage therapy to try to cope with the disease. So I can write about this with professional and personal passion, and I finally got around to it here — just one of dozens of topics I really should write about!

When I was a massage therapist, many years before I became a fibromyalgia patient myself, I had a reputation for gentleness that attracted fibromyalgia clients — many who were refugees from the carelessness and “brutality” of other massage therapists.

Since then, in my publishing career, I’ve heard many more hair-raising reports of overconfident, rough, and bizarre treatment, from readers around the globe. It’s definitely a bit of a thing.

I got lucky with a great therapist for a few years

From about 2016 to 2019, I had an excellent massage therapist, who will probably read this. 👋🏻 ❤️ Her style was ideal for my needs: gentle, cautious and humble. And yet, crucially, she could also skillfully, collaboratively dial up the intensity where I occasionally craved it.

The overall trajectory of my fibromyalgia did not change, and yet her help also still seemed invaluable. I shudder to think how much more stressful those early years would have been without her help. I don’t think that five-star review was based solely on mild, transient relief: it often seemed more lasting. My tendency to get flare-ups never changed, but massage seemed to blunt some of them nicely.

She retired, alas. As good as I had it with my ace massage therapist, the benefits weren’t so astonishing that it has seeemed worth the costs and risks of trying hard to find a satisfactory replacement since then. I’ve only tried a couple times, with poor results: too strong, too haphazard, and too much pseudoscientific bullshit.

I find it hard to relax on a massage table when a massage therapists says, “So, have you tried homeopathy?” or “I’d like to look more closely at your posture today.”

Massaging the disease away is obviously a long shot

You can’t rub out the lupus, and probably not fibromyalgia either.

There’s never been any good specific reason to think that massage can alter the course of the disease of fibromyalgia. After all, we don’t really know how fibromyalgia works in the first place, probably because it isn’t one disease but a category of problems with similar symptoms — none of which are particularly likely to yield to kneading muscle or stroking the skin or yarding on connective tissue.

For instance, some cases of fibromyalgia may be caused by chronic irritation of the spinal cord from various kinds of upper cervical instability. Others may be post-viral syndromes (closely related to long Covid and chronic fatigue syndrome), which involve some profound physiological jiggery pokery.

Clearly massage is unlikely to be able to do much to change either of those predicaments.

The complications of the disease are another matter. Fibromyalgia seems to produce a high-rate of more conventional aches and pains and injuries, especially regional flare-ups of crampy, aching muscle pain — and that’s the kind of discomfort that anyone might seek out a massage for. It’s just that fibromyalgia patients have more and worse! But they may be as individually treatable with massage as they are in anyone else. And how treatable is that? Well, that’s what the rest of the article is about, and one of my books (and parts of all the others). But they are certainly a more conventional and realistic challenge for massage therapy than “cure fibromyalgia”!

But what about inflammation?

The main reason people think that fibromyalgia and massage go well together is that they know that fibromyalgia patients are inflamed (probably true),2 and they believe massage is anti-inflammatory (probably not). They either believe that explicitly and specifically because they remember a study that said so … or they believe it in a much sloppier way because it just seems like the obvious low-hanging-science-fruit explanation for why massage is so awesome in general. Anything that feels that great must be “anti-inflammatory,” amiright?

But it sounds smarter than it is. There’s no good scientific support for anti-inflammatory massage3 … and, even if there was, it’s unlikely that it would be just the right kind of anti-inflammatory effect for fibromyalgia. Inflammation is one short word for immune system activities as diverse as a rainforest. Whatever the immune system is up to in fibromyalgia, it’s probably no more responsive to massage than it is in people with rheumatoid arthritis, irritable bowel syndrome, atherosclerosis, asthma, fever, or sepsis.

“Inflammation” is not one thing, and you can’t treat it like one thing — just like not all fires can be put out with water (that’s a super nerdy blog post about epistemology from physical therapist Erik Meira).

And what about the sensitization? Massaging away the symptoms of fibromyalgia

Fibromyalgia makes you feel bad all over, and massage can feel good all over, and so maybe it’s a good match? As popular as the anti-inflammatory-massage claim is, I think this is actually the more basic and common “logic” of the massage-fibromyalgia link, the main reason massage is thought to be helpful: the hope that it can paint over the awful sensations with something nicer, to try to reduce the suffering.

There might be more to it than just fighting a bad feeling with a nice one.

Fibromyalgia patients suffer from “sensitization,” a marked increase in the sensation of potential threatening stimuli from many tissues. Fibromyalgia could be defined by this — dysfunctional sensitization as the major mechanism of the disease, a kind of neuropathy. Or, more likely, it’s “just” a normal physiological response to an otherwise undetectable pathology. Specifically, it would probably be driven immune disturbance — much like the flu aches, but lasting.

Massage probably cannot change the why of the sensitization.4 But it is plausible that it might be able to temporarily turn down the volume. That’s why “soothing” might be a bigger deal than it sounds like, getting right to the heart of the matter: just the right massage might be able to lift that pathologically low pain threshold, treating the symptom quite directly and robustly. Best case.

An analogy: NSAIDs are particularly good for menstrual cramping for a specific physiological reason, and yet they still aren’t “curing” anything. It’s just that they are better for that symptom than other symptoms, better than other pain killers. Massage for fibromyalgia might be like that.

Or it might just deliver ordinary sensory soothing and distraction, nothing relevant to the mechanism of the disease — still valuable, but weaker and briefer.

Either way, it’s just symptom control rather than treating the root of the problem — but damned if we don’t all need some symptom taming sometimes. (Beware of denigrating symptom masking … especially around chronic pain patients! Makes us cranky!)

Unfortunately, even this simpler rationale for fibromyalgia massage isn’t a clean win, not by a long shot, because sensitization can be easily aggravated — maybe even much more easily than it can be eased.

“Sensitization” is a boosted sensitivity to potentially threatening stimuli — a lowered pain threshold. In fibromyalgia patients, it might be a glitch in the pain system itself, or a normal response to an unknown pathology.

How to harm a fibromyalgia patient in just one hour

Many fibromyalgia patients avoid massage; many feel extremely fragile, like they are made of thin glass, and even a slightly overzealous massage is too intense and has real potential to cause a flare-up.

And still another problem: the malaise. The “oogy” feeling. Just like ME/CFS patients don’t just feel “tired,” fibromyalgia patients don’t just feel “sore.” They share a sickly quality. As mentioned above, it’s more like the flu aches, and that similarity probably isn’t a coincidence.

And weirdly, rather than being clearly “anti-inflammatory” or making people “feel good all over,” massage is actually somewhat notorious for the phenomenon of post-massage soreness and malaise … an effect that often afflicts even healthy people. But if you came in the door feeling that way already? It’s a disaster to aggravate that, and I’ve definitely experienced that disaster personally, and seen it clinically.

It’s starting to seem like massage might be terrible for fibromyalgia!

And yet sufficiently respectful, gentle massage — fine tuned to the preferences of the patient — should not be a problem. In other words, good massage should feel good, for most patients but especially the ones with fibromyalgia. Surely the right massage can help soothe the frazzled nerves of a uninjured patient whose primary symptom is pain?

And if it can’t do that, what good is it? Just like with back pain, fibromyalgia seems like it really should be in massage’s wheelhouse! There's got to be enough science for that to be clinically proven, right?

Right?

🦗🦗🦗

What do the experts reckon?

In 2017, Thieme et al reviewed four sets of treatment guidelines for fibromyalgia, produced by four different organizations.5 Although dense reading, it all boiled down to a really simple conclusion: they generally didn’t agree with each other!

One group strongly recommends against massage therapy! Basically because of the risks and harms I outline above.

Another is weakly against it.

A third recommends it … moderately.

And the fourth? No comment! Not even mentioned.

And that’s fibromyalgia experts trying to tell clinicians how to help fibromyalgia patients. If they can’t, who the hell can?

Read the lines between the guidelines and it’s obvious that no one really knows. Clinical guidelines are a double-edged sword,6 and it quickly gets worse as you stray from the mainstream.

The reason for the inconsistency is obvious …

Not nearly enough science

A 2014 Chinese review of just a handful of studies by Li et al7 is not particularly helpful, but beggars can’t be choosers. If the salamander brand wasn’t so focused on science, I wouldn’t even bother with this one. But my job is to bring the science — even when it’s lame. Like the clinical guidelines, this paper mostly shows off what a shabby state massage therapy research is in.

The types of massage reviewed were all over the map. Some the straightforward (Swedish massage). Others were trendy-but-meaningless, like “connective tissue massage” (the idea of isolating or even emphasizing connective tissue in massage is a biological absurdity, like trying to eat the gristle out of a steak without masticating anything else). and there was rank quackery like “therapeutic touch” (which is literally not massage at all and roughly on par with believing in magic). Arguably this wasn’t a review of “massage therapy” but just miscellaneous stuff massage therapists do, with no chance of a coherent result.

It is somewhat novel because it includes a little Chinese research, but that doesn’t really help, and may even make things worse.8

The review’s conclusions are superficially positive: massage “significantly improved pain, anxiety, and depression in patients with fibromyalgia.”

Did it really though? Turns out that’s only statistical "significance" … not clinical significance. The size of the measured benefit is trivial — much smaller than amplitude of the noise in the data!9

Also, that “conclusion” is based mostly on the data showing some relief from depression and anxiety. That’s the one truly evidence-based benefit of massage, good for anyone, including people with fibromyalgia. Unfortunately, it’s got nothing to do with actually improving their fibromyalgia. If you leave that out of the results, there’s little left.

The data is silent on long term effects, of course.10

The review proves nothing about massage for fibromyalgia one way or the other; it’s obviously inconclusive, despite the positive-sounding conclusion. There are major caveats on what they report. It epitomizes the “garbage in, garbage out” problem with meta-analysis. There was virtually no research on this topic worth analyzing to begin with. Trying to pool the results of several weak studies of quite different things is basically meaningless. To the extent that the study results are generally inconclusive and ambiguous, the conclusions of any review are going to have more to do with the authors’ opinions and biases than the data.

The evidence, as of 2014, constituted faint, muddled, hopelessly unreliable praise … and there has been almost nothing since.

A little bit more science, and mildly encouraging

There have been no more reviews of massage-for-fibromyalgia science since then largely because there is hardly anything else to review — just one obvious candidate, in fact. In 2020, Nadal-Nicolás et al published the results of a tiny little test of the effects of massage on women with fibromyalgia.11

Tiny and ill-conceived: a dubious “control” group that likely suffered from a “frustrebo” effect (AKA “performance bias”), where control group participants were probably not thrilled to be relegated there. Instead of massage, those participants received … wait for it … “ultrasound sessions performed without conductive gel and with the machine turned off.” Lovely!

Also, the intervention was so minimal that it would make massage therapists laugh with disbelief that anyone would think it was worth studying: “moderate pressure for 15 minutes on the posterior cervical musculature.” Seriously?

These are fairly serious flaws.

But we take what we can get in this field. It really doesn’t mean much on its own, but FWIW … that lame massage group got better, by most measures, compared to the ridiculous control group. Just a little. And with one odd exception.12

Also weird, even the presumably disappointed control group members, showed almost the same improvements — from a rub with a cold ultrasound wand! Weird. 🤷🏻‍13

So should people get massage for fibromyalgia?

Yes, if they want it, of course — but cautiously.

The weak evidence isn’t why I’ve stopped seeking out more massage for my own fibromyalgia. My concern is entirely practical — the exasperating and expensive process of finding a sufficiently gentle and humble therapist.

The tricky goal is to find massage that is strongly focused on having a non-threatening sensory experience — pleasing and relaxing and satisfying. It is not easy, and it is not going to be a cure, but it may be helpful. And maybe someday science will even show that it’s helpful!

The most serious likely danger is symptom aggravation — but a close second is the waste of a bunch of time and money chasing a pseudoscientific or downright magical cure, even if it’s gentle. The genuine minor benefits of a pleasant massage can make the hope of bigger benefits seem much more realistic than they are. Far too many massage therapists will insist that what you truly need is a good chakra balancing, or vagus resetting, or emotional trauma releasing.

Not only are such expensive distractions the last thing fibromyalgia patients need, no one should vote for therapy like that for with their hard-earned dollars.

Notes

1. Jones GT, Atzeni F, Beasley M, et al. The prevalence of fibromyalgia in the general population: a comparison of the American College of Rheumatology 1990, 2010, and modified 2010 classification criteria. Arthritis Rheumatol. 2015 Feb;67(2):568–75. PubMed 25323744 ❐
2. Bäckryd E, Tanum L, Lind AL, Larsson A, Gordh T. Evidence of both systemic inflammation and neuroinflammation in fibromyalgia patients, as assessed by a multiplex protein panel applied to the cerebrospinal fluid and to plasma. J Pain Res. 2017;10:515–525. PubMed 28424559 ❐ PainSci Bibliography 53589 ❐

   Although inflammation has been suspected in fibromyalgia, it has been poorly studied to date. This experiment went much further, employing “a new multiplex protein panel enabling simultaneous analysis of 92 inflammation-related proteins.” They looked for these markers in the cerebrospinal fluid and blood of 40 fibromyalgia patients and compared with healthy controls, finding an “extensive inflammatory profile.”

3. A unreplicated and deeply flawed 2012 scientific study (Crane et al.) claimed to find that massage reduced inflammation in intensely exercised muscles. The profession of massage therapy took the conclusions at face value and claims that massage “reduces inflammation” are now common. For more information, see Massage Does Not Reduce Inflammation: The making of a new massage myth from a high-tech study of muscle samples after intense exercise.
4. Another example of a hypothesis about how fibromyalgia might work: it may literally be caused an infection, or something about the aftermath of one. If that’s true, then the immune system is probably going to remain active, and massage can’t get it to stand-down for a bit of relaxation any more than it can cure the common cold. In the most wildly optimistic scenario, sensitization might be substantially powered by severe stress — physical and/or psychological — which is a needle that massage would have a fighting chance of moving. But fibromyalgia probably doesn’t work like that, and it would still be tall order even if it did.
5. Thieme K, Mathys M, Turk DC. Evidenced-Based Guidelines on the Treatment of Fibromyalgia Patients: Are They Consistent and If Not, Why Not? Have Effective Psychological Treatments Been Overlooked? J Pain. 2017 Jul;18(7):747–756. PubMed 28034828 ❐
6. They are generally reliable snapshots of the best ideas available, and mostly avoid the worst. But they are also dry opinion pieces written by a committee showing off their collective professional biases. They often have all of the foibles of a scientific review, but don't even bring the science — which is true even of relatively rigorous medical guidelines. For instance, Tricoci et al. studied the scientific basis for cardiology guidelines in 2009, reporting that they are "largely developed from lower levels of evidence or expert opinion," with only 11% supported by good quality evidence. That's an awful lot of shooting from the hip, cardiology! But that was 2009, practically the Dark Ages, so what about now? "This pattern does not appear to have meaningfully improved," a similar 2018 report concluded. I don’t think this is actually as horrifying as it looks on the surface, but it’s certainly bad enough to make my point: guidelines aren't great.
7. Li YH, Wang FY, Feng CQ, Yang XF, Sun YH. Massage therapy for fibromyalgia: a systematic review and meta-analysis of randomized controlled trials. PLoS One. 2014;9(2):e89304. PubMed 24586677 ❐ PainSci Bibliography 53919 ❐

   Li et al. reviewed just nine randomized controlled trials of massage for fibromyalgia, involving 404 patients. That’s absurdly small, probably too small. For contrast, a new meta-analysis of the relationship between exercise and brain health covered … 2724 randomised controlled trials and 258,279 participants. Now that’s a big pool of data to splash around in!

8. The introduction curiously boasts that “traditional Chinese massage is one of the most ancient massage therapies,” but there is not enough distinctive about Chinese massage that makes it worthy of any focus — and massage is ancient in every culture. This weird, prominently placed statement is a big red flag 🇨🇳 that the interpretation of Chinese data is going to be biased. Which is kind of a thing with Chinese research on anything that overlaps with traditional Chinese medicine. For instance, there are strong reasons to believe that Chinese acupuncture research is so biased it’s worthless.
9. Using the word “significantly” this way is technically correct and defensible … but otherwise misleading to all but the most alert readers. Statistically significant results can be clinically insignificant! Mathematically sound, but nevertheless trivial. This is a common bit of sleight-of-hand researchers use to make their conclusions sound more like good news. See Statistical Significance Abuse.
10. Only two studies had any follow-up data at all. Without promising data about long-term effects, it would be hard to say massage “works” for fibromyalgia even if the short term evidence was much more clearly positive.
11. Nadal-Nicolás Y, Rubio-Arias JÁ, Martínez-Olcina M, et al. Effects of Manual Therapy on Fatigue, Pain, and Psychological Aspects in Women with Fibromyalgia. Int J Environ Res Public Health. 2020 Jun;17(12):4611. PubMed 32604939 ❐ PainSci Bibliography 50140 ❐

12. They got more fatigued. Not sure what to make of that. Were they getting some post-massage malaise, the phenomenon discussed earlier? Were they much more relaxed on average and that registered as “tired”? Like the way relaxation and weariness get tangled up for a lot of people on holiday, or on a Sunday? Or is there even a difference? I’ve often wondered if the reason I sometimes feel so bedraggled after a massage is that experience breaks down my psychological defenses against fatigue. Like everyone with chronic pain, I always feel like I’m fighting to act normal, to soldier on, like I’m marching resolutely into a cold, hard headwind. What happens if a massage takes the “fight” out of you?

    That’s some pretty speculation, but remember that we’re talking about moderate pressure for 15 min on the posterior cervical musculature.” And I’m not sure that’s breaking through my psychological defenses against fatigue!

13. But the control group pretty much always improves, which is a fun fact about clinical trials. I’m always rather amazed by how predictable that effect is. This is specifically why a good study has to be a statistical ménage à trois, comparing the treatment to no treatment and to placebo (known as an analysis of variance, or ANOVA). Failure to do this is a "widespread, stark statistical error" found in about half of all studies (Nieuwenhuis et al) — including this one!