It’s not uncommon for those with fibromyalgia and hypermobility to feel oddly disconnected from their own bodies, struggling to put a name to what they’re feeling and often confusing tired with sad, or hungry with anxious. Many of the people we work with describe sitting there knowing full well that something is wrong inside, yet having no words at all to explain it. If that sounds familiar, you’re not imagining it, and there’s actually a decent body of research sitting behind the experience.
That name is alexithymia.
So, the purpose of writing this article is to give those with chronic pain and hypermobility a proper look at alexithymia. Not the vague “mind body connection” nod you usually get. And not a single paragraph buried at the tail end of an article about something else entirely. I am going to go reasonably deep here, because the topic frankly deserves it. We’ll work through what alexithymia actually is. We’ll look at what the research says about its link with chronic pain and fibromyalgia. We’ll dig into why it crops up so often in those with hypermobility. And we’ll ask whether anything can actually be done about it.
This is a bit of a beast of an article, with a fair amount of research packed into it. The sole aim? To show you what’s solid, what’s still early days, and where the confident claims floating around online have started running well ahead of the data.
So, if you’re ready to make sense of why your own body can feel like a foreign country at times, let’s go.
What Alexithymia Actually Is
The word itself comes from the Greek, with a meaning without, lexis meaning words, and thymos meaning feelings, so quite literally it translates as having no words for feelings.
But it’s a fair bit more than simply being a little rubbish at talking about your emotions, and researchers tend to break it down into three distinct features. The first is difficulty identifying feelings, where you’ve got some physical sensation or emotional response clearly going on inside but you can’t quite pin a name to it. The second is difficulty describing those feelings to other people, even on the occasions when you do manage to sense that something is happening. And the third, which researchers call externally oriented thinking, is a tendency to focus on external events and practical matters rather than whatever happens to be going on internally.
Most of the research uses a questionnaire called the Toronto Alexithymia Scale-20, usually shortened to the TAS-20, and scores of 61 or above will generally flag someone as alexithymic. Now, here’s the catch that often gets left out. The research community has actually grown pretty critical of the TAS-20 over recent years. Why? Two reasons. That third subscale measuring externally oriented thinking doesn’t reliably measure what it claims to[11]. And the scale’s predictive power for pain outcomes largely vanishes once you properly account for depression and anxiety[12]. A newer option called the Perth Alexithymia Questionnaire tends to perform rather better, though none of this makes the existing research worthless, it simply means you’ve got to read the numbers with a bit of context attached.
The current best estimate puts alexithymia in roughly 10% of the general population, but in those living with chronic pain that number tends to climb a fair bit higher.
The Chronic Pain Link
The most thorough look at alexithymia across chronic pain conditions to date pooled together 77 separate studies covering just over 8,000 people living with chronic pain[1]. What it found was that people with chronic pain scored substantially higher on alexithymia than people with no health condition at all, and notably higher than people carrying other health conditions that don’t happen to involve pain[1].
Now, if you lead with that headline alone it sounds like an open and shut case, with alexithymia clearly driving the pain. But the data sitting underneath is rather more interesting than that simple story suggests. In a general population study of nearly 1,000 adults in Japan, people scoring in the alexithymic range turned out to be around 2.5 times more likely to also have chronic pain than those with lower scores[2]. The important bit here is that this was a community sample rather than a clinic, so these weren’t people already sat in a pain service waiting room, the relationship simply turned up out in the general public[2].
So here’s where it gets genuinely interesting. Alexithymia reliably correlates with pain intensity, disability, depression and anxiety. But here’s the twist. When you statistically strip the contribution of depression and anxiety back out of the equation, that direct link between alexithymia and how much something actually hurts very nearly disappears[1]. The effect sizes drop from meaningful all the way down to trivially small[1].
What that’s really telling us is that the link between alexithymia and pain probably runs largely through emotional distress, rather than being some direct biological pathway. It doesn’t mean alexithymia is irrelevant by any stretch, it just means the story is a good deal messier than a neat “alexithymia makes pain worse” headline would have you believe.
There is, however, a longitudinal signal worth knowing about here. A prospective study following over 1,400 adults with chronic pain found that higher alexithymia right at the start actually predicted worse pain severity and worse pain interference three months down the line[14]. What makes that more compelling is that it held up even after accounting for pain catastrophising, which is itself a well recognised pain amplifier[14]. So something does appear to be getting added on top of the usual suspects, it’s just not the simple, clean line from A to B that you’ll sometimes see claimed.
Fibromyalgia Specifically
When it comes to fibromyalgia, the numbers really are quite striking. In one study comparing people with fibromyalgia against those with other rheumatic diseases and against healthy controls, 47.9% of the fibromyalgia group hit the alexithymia threshold on the TAS-20, compared with just 2.6% of the healthy controls[3]. That’s getting on for half the group, and the dimension that came up most consistently elevated was difficulty identifying feelings, which is of course that core struggle of not really knowing what you’re feeling inside[3].
Now, one honest caveat before anybody runs off with the “half of all fibro” line. Across the wider literature these figures swing about massively. We’re talking anywhere from around a fifth to over 90%, depending entirely on the study and the sample being used. That roughly half figure tends to come from clinical samples, people attending specialist clinics, so it naturally sits at the higher, more selected end. Useful, but a long way from the whole picture.
Fibromyalgia also scored higher on alexithymia than chronic migraine did in a direct head to head comparison study, which is rather notable when you consider that both groups were living with chronic pain[5]. Something about fibromyalgia in particular does seem to crank this up, rather than it simply being a generic feature of chronic pain across the board.
On the quality of life side of things, alexithymia, and specifically that difficulty identifying feelings component, directly worsened quality of life in a study of 205 people with fibromyalgia, even once depression had been properly accounted for[4]. There was an indirect effect running through depression as well, so both pathways appeared to be working away at once, with alexithymia dragging on quality of life directly whilst also feeding the depression that then dragged things down even further[4].
If you’re working on your fibromyalgia and want something practical to get started with today, the Full Body Fibro Tool Box has the exercises and strategies that I’d point you towards first.
Why Hypermobility and hEDS Are a Different Beast
So this is where it gets particularly interesting for anyone living with hypermobility spectrum disorder or hypermobile Ehlers-Danlos syndrome. The alexithymia connection in this group isn’t simply a case of more chronic pain leading to more alexithymia. There’s actually a specific mechanistic argument on the table, and it goes all the way down to how the nervous system itself is wired up.
It all starts with interoception, which is essentially the brain’s ability to sense the state of your body from the inside. Your brain doesn’t just sit there passively receiving body signals. It actively runs predictions about them. It forecasts what your heart rate, gut pressure, joint position and temperature ought to be, then updates those forecasts against the actual signals flowing in. And as it happens, our emotions appear to be partly built out of this very process.
Now bring hypermobility into the picture, because hypermobile joints tend to send imprecise proprioceptive signals back up the line. The signals are certainly there, they’re just noisy and vague rather than crisp and clear. A 2024 cross-sectional study of 182 people found that this proprioceptive imprecision in hypermobility sat on a pathway running from neurodivergence through to emotional dysregulation[8]. The brain’s prediction system really starts to struggle when the incoming signals it has to work with are simply too fuzzy to form a reliable guess from. It’s worth being clear about the study design here, though, because it was cross sectional, meaning a snapshot rather than people tracked over time, so it maps out a plausible pathway rather than actually proving cause and effect.
Earlier neuroimaging work had already found that hypermobile people showed heightened reactivity in the insula, which is the brain’s main interoceptive hub, when they were shown emotional images[6]. Their insulas were firing harder rather than quieter, and interoceptive sensitivity statistically mediated the link between hypermobility and anxiety within that same study[6]. So the brain scans had effectively handed us a candidate mechanism to chew on.
On top of that, the connective tissue involved in hEDS and HSD doesn’t simply make your joints a bit bendier, it also wraps itself around blood vessels and nerves throughout the body. The upshot is autonomic dysfunction, where the nervous system’s regulation of heart rate and blood pressure becomes a good deal less stable. And that piles even more noise onto the very body signals the brain is already trying so hard to read[7].
So you end up with a system where the internal signals are imprecise and the autonomic noise sitting on top of them is higher than it should be. The brain’s ability to accurately label what it’s actually sensing gets steadily worse as a result. That, more or less, is how alexithymia might come to develop within this particular group.
A 2016 study put the whole thing rather plainly, arguing that alexithymia isn’t really just an emotion problem at all, but a general interoceptive deficit[9]. People with alexithymia have a habit of muddling pain signals up with emotional distress and the other way around, genuinely struggling to tell whether they’re in pain or anxious, hungry or sad, exhausted or simply a bit low. So when you’ve already got a nervous system pumping out ambiguous signals to begin with, you can see how that underlying confusion only ends up getting worse.
A preliminary study of 25 people with hEDS found significant negative associations between affect regulation, alexithymia included, and psychophysical health, with alexithymia in particular linked to worse pain perception[13]. It’s a small sample, so it’s best treated as a hint rather than the final word on anything, but it does point in much the same direction as everything else we’ve looked at.
For more on the overlap between hypermobility and dysautonomia, and how these conditions tend to feed into one another, the POTS, EDS, and MCAS trifecta post covers that whole area in a lot more detail.
What About POTS and Dysautonomia?
Dysautonomia, of which POTS is one of the more recognised forms, sits right at the crossroads of everything we’ve been discussing. POTS, or postural tachycardia syndrome, involves the autonomic nervous system failing to properly manage your blood pressure and heart rate when you change position, and it turns up very commonly alongside both hEDS and HSD.
Now, I should be straight with you on this one. There isn’t a body of research out there directly measuring alexithymia in POTS populations in the way there is for fibromyalgia, so we can’t lean on it. What does exist is the broader picture we’ve already covered, with autonomic dysfunction worsening interoceptive signalling[7], and that interoceptive deficit sitting right at the very core of alexithymia[9]. So the mechanistic argument is solid enough to take seriously, the direct population data just isn’t there yet, which is well worth keeping in your back pocket whenever you see confident claims about this particular link doing the rounds online.
Is It a Trait You’re Born With, or Can It Change?
This is one of those questions that gets a proper argument going in the research, and it genuinely matters for what you end up doing with the information.
A 2025 longitudinal study tracked people across three separate measurement points over the course of seven months and found that their alexithymia scores barely moved at all[10]. Anxiety wobbled about quite a bit over that same period, yet alexithymia held remarkably steady throughout. The study reported an intraclass correlation of 0.60, which is decent evidence pointing towards a fairly stable trait[10]. In plain terms, alexithymia isn’t simply acting as a stand in for how low you happen to be feeling on any given day.
On the other side of the coin, though, there’s a separate fibromyalgia study in which 100 people went through six months of duloxetine combined with aerobic exercise. Across the group as a whole, their TAS-20 scores fell from a mean of 61.5 down to 54.2[15]. In the subgroup who’d actually scored as alexithymic at baseline the fall was bigger still, dropping from 65.68 down to 58.25, which was clearly still elevated but meaningfully lower than before[15]. Tellingly, that drop tracked alongside genuine reductions in pain, which is certainly not nothing[15].
So the most honest read on all of this is probably as follows. Alexithymia looks to be primarily a stable trait, but with a component that does seem to shift around when your overall health and pain burden change, and both of those things can comfortably be true at the very same time.
What Actually Helps
The treatment evidence in this particular area is honestly a fair bit thinner than I’d like it to be, so I’m not going to sit here and dress it up as something it isn’t.
There’s no large randomised controlled trial of anything designed specifically to target alexithymia in chronic pain, so what we’re left with is rather more indirect. Duloxetine paired with aerobic exercise improved alexithymia scores alongside the wider fibromyalgia symptoms in one prospective study[15], though that was observational rather than a properly controlled trial, so it needs reading cautiously. The aerobic exercise part is the genuinely interesting bit. There’s a reasonable argument that improving your autonomic regulation through movement would cut down the interoceptive noise. And that should in turn make those body signals a fair bit easier to read.
Alexithymia in this context looks to be substantially about interoceptive dysfunction, rather than a purely psychological problem in the old fashioned sense. So the things most likely to help are the ones that improve the actual quality of those internal signals. That means pacing, autonomic support and steady rehab. And alongside that, approaches that explicitly build the skill of noticing and labelling your internal states. Think body focused therapy, mindfulness based work, and structured pain education that finally hands you a vocabulary for what you’re genuinely feeling.
Generic “just try to be more aware of your feelings” advice probably isn’t the mechanism here, though, because that’s essentially trying to patch a wiring problem with a quick pep talk.
The Bottom Line
So where does all of this actually leave us. Alexithymia is genuinely more common in those living with chronic pain, and it’s distinctly elevated in fibromyalgia, with roughly half of those in clinical research samples scoring within the alexithymic range. In the hypermobility conditions there’s a specific biological argument sitting on the table, where noisy proprioceptive signals, autonomic dysfunction and insula hyperreactivity all combine to make reading your own internal body states that much harder.
The link between alexithymia and pain intensity specifically appears to be mostly mediated by depression and anxiety. That doesn’t make it unimportant in the slightest, but it does mean the relationship is far more about emotional amplification than any direct “alexithymia causes pain” sort of mechanism.
The whole trait or state question lands somewhere fairly sensible, coming out as probably mostly trait but with a component that genuinely responds to your state, particularly when the fibromyalgia itself is being actively treated. And the TAS-20 has its known structural problems, so a degree of inconsistency in the research is honestly baked in right at the tool level before you even start.
What all of this means in practice is actually rather human. Putting a name to alexithymia might finally make sense of experiences that previously felt completely baffling. Why it’s so hard to know what you’re feeling. Why pulling apart your physical symptoms from your emotional ones turns out to be so genuinely difficult. In the context of hypermobility and fibromyalgia, it’s a physiological consequence of how your interoceptive system happens to be running, and it certainly isn’t a character flaw or a personal failing on your part.
If you want to work on the broader functional picture in fibromyalgia, the Full Body Fibro Course is where I’d point you to start, since it walks you through the whole rehab approach right from the ground up.
FAQ
What is the difference between alexithymia and emotional numbness?
They can certainly look fairly similar from the outside, but they really are two different things underneath. Emotional numbness, which often comes along with depression or dissociation, is about a blunted or entirely absent emotional response in the first place. Alexithymia, by contrast, is far more about the processing of whatever internal state you do happen to have, so you might genuinely feel something but simply can’t identify or label it. People with alexithymia will often report feeling physically unwell without ever being able to say what’s wrong emotionally, so numbing is really about quantity whilst alexithymia is much more about clarity.
Does everyone with fibromyalgia have alexithymia?
No, not at all. The research suggests that roughly 47 to 48% of people with fibromyalgia in clinical samples score within the alexithymic range[3]. That’s well above the general population figure of around 10%, but it still clearly means that a great many people with fibromyalgia don’t have it, so it’s a common feature rather than a defining one. And as with most of the research in this area, those samples tend to be made up of groups attending specialist clinics, which may not fully capture the spread of everyone living with the condition out in the wider world.
Can I test for alexithymia myself?
The TAS-20 is freely available and very widely used, though as covered further up it does come with its limits. The Perth Alexithymia Questionnaire has been more recently validated and tends to be rated rather more highly by current researchers[12]. Neither of them is a diagnostic tool on its own, though. So if you score highly and the description genuinely fits, it’s well worth raising with a psychologist or pain specialist who can put the whole thing into proper context for you.
Is alexithymia a mental health condition?
It’s generally treated as a personality trait or a fairly stable psychological characteristic, rather than a psychiatric diagnosis in its own right. It shows up in perfectly healthy people and then at much higher rates across various clinical groups, and some researchers frame it as a neurodevelopmental feature, partly because of how often it ends up overlapping with autism and ADHD. It isn’t actually listed in either the DSM or the ICD as a standalone condition that you can be diagnosed with.
If alexithymia is mostly a stable trait, why bother identifying it?
Because understanding the mechanism genuinely changes how you go about tackling it. If you know that part of your pain experience is being amplified or muddled by poor interoceptive signal quality, you can start to target that specifically. Movement, pacing, autonomic support, body focused work. Rather than assuming the problem is either purely structural or purely sitting in your head. Naming a mechanism obviously doesn’t mean you fix it overnight, but it does at least stop you trying to solve a maths problem using a grammar rulebook.
– The Fibro Guy Team –
References
- Aaron, R.V., Fisher, E.A., de la Vega, R., Lumley, M.A. and Palermo, T.M. (2019) ‘Alexithymia in individuals with chronic pain and its relation to pain intensity, physical interference, depression, and anxiety: a systematic review and meta-analysis’, Pain, 160(5), pp. 994 to 1006. doi: 10.1097/j.pain.0000000000001487
- Shibata, M., Ninomiya, T., Jensen, M.P., Anno, K., Yonemoto, K., Makino, S., Iwaki, R., Yamashiro, K., Yoshida, T., Imada, Y., Kubo, C., Kiyohara, Y., Sudo, N. and Hosoi, M. (2014) ‘Alexithymia is associated with greater risk of chronic pain and negative affect and with lower life satisfaction in a general population: the Hisayama Study’, PLoS One, 9(3), p. e90984. doi: 10.1371/journal.pone.0090984
- Marchi, L., Marzetti, F., Orru, G., Lemmetti, S., Miccoli, M., Ciacchini, R., Hitchcott, P.K., Bazzicchi, L., Gemignani, A. and Conversano, C. (2019) ‘Alexithymia and psychological distress in patients with fibromyalgia and rheumatic disease’, Frontiers in Psychology, 10, p. 1735. doi: 10.3389/fpsyg.2019.01735
- Tesio, V., Di Tella, M., Ghiggia, A., Romeo, A., Colonna, F., Fusaro, E., Geminiani, G.C. and Castelli, L. (2018) ‘Alexithymia and depression affect quality of life in patients with chronic pain: a study on 205 patients with fibromyalgia’, Frontiers in Psychology, 9, p. 442. doi: 10.3389/fpsyg.2018.00442
- Ghiggia, A., Bottiroli, S., Lingiardi, V., Tassorelli, C., Galli, F. and Castelli, L. (2022) ‘Alexithymia and psychological distress in fibromyalgia and chronic migraine: a cross-sectional study’, Journal of Psychosomatic Research, 160, p. 111048. doi: 10.1016/j.jpsychores.2022.111048
- Mallorqui-Bague, N., Garfinkel, S.N., Engels, M., Eccles, J.A., Pailhez, G., Bulbena, A. and Critchley, H.D. (2014) ‘Neuroimaging and psychophysiological investigation of the link between anxiety, enhanced affective reactivity and interoception in people with joint hypermobility’, Frontiers in Psychology, 5, p. 1162. doi: 10.3389/fpsyg.2014.01162
- Sharp, H.E.C., Critchley, H.D. and Eccles, J.A. (2021) ‘Connecting brain and body: transdiagnostic relevance of connective tissue variants to neuropsychiatric symptom expression’, World Journal of Psychiatry, 11(10), pp. 805 to 820. doi: 10.5498/wjp.v11.i10.805
- Eccles, J.A., Quadt, L., Garfinkel, S.N. and Critchley, H.D. (2024) ‘A model linking emotional dysregulation in neurodivergent people to the proprioceptive impact of joint hypermobility’, Philosophical Transactions of the Royal Society B, 379(1908), p. 20230247. doi: 10.1098/rstb.2023.0247
- Brewer, R., Cook, R. and Bird, G. (2016) ‘Alexithymia: a general deficit of interoception’, Royal Society Open Science, 3(10), p. 150664. doi: 10.1098/rsos.150664
- Larionow, P., Mudlo-Glagolska, K. and Preece, D.A. (2025) ‘Is alexithymia a trait or a state? Temporal stability in a three-wave longitudinal study’, Journal of Clinical Medicine, 14(8), p. 2628. doi: 10.3390/jcm14082628
- Veirman, E., Van Ryckeghem, D.M.L., Verleysen, G., De Paepe, A.L. and Crombez, G. (2021) ‘What do alexithymia items measure? A discriminant content validity study of the Toronto Alexithymia Scale-20’, PeerJ, 9, p. e11639. doi: 10.7717/peerj.11639
- Aaron, R.V., Preece, D.A., Heathcote, L.C., Wegener, S.T., Campbell, C.M. and Mun, C.J. (2024) ‘Assessing alexithymia in chronic pain: psychometric properties of the Toronto Alexithymia Scale-20 and Perth Alexithymia Questionnaire’, Pain Reports, 10(1), p. e1204. doi: 10.1097/PR9.0000000000001204
- Camerota, F., Mariani, R., Petronelli, G., Rabissi, B., Vizzini, M.A.S., Di Trani, M., Roselli, V., Pasquini, M., Renzi, A. and Celletti, C. (2025) ‘Affect regulation capabilities in hypermobility Ehlers-Danlos syndrome: exploring the associations with pain perception and psychophysical health’, Brain Sciences, 15(2), p. 202. doi: 10.3390/brainsci15020202
- Aaron, R.V., Mun, C.J., McGill, L.S., Finan, P.H. and Campbell, C.M. (2022) ‘The longitudinal relationship between emotion regulation and pain-related outcomes’, Journal of Pain, 23(6), pp. 981 to 994. doi: 10.1016/j.jpain.2021.12.008
- Atasoy, M., Kalaoglu, E., Takim, U. and Gokcay, H. (2025) ‘Investigation of alexithymia levels in fibromyalgia before and after treatment’, Clinical and Experimental Rheumatology. doi: 10.55563/clinexprheumatol/45nmy7
