In this article I want to look at the relationship between rumination, catastrophising and chronic pain.
We’ve long known that stress has an enormous role to play in our pain outcomes for a lot of inflammatory and chronic conditions,
There has also been a lot of research into our mental states, our thought processes, and how we interact with the world, and how this can affect our pain levels.
Specifically, I’m talking about rumination – running over a thought repeatedly in your head – and catastrophising – thinking of the worst case scenario even if it hasn’t happened.
And tying this together is the role that our relationships, both out in the real world and online, can have.
There are some really helpful studies which we’re going to dive into. I’ll share the links so you can dig into them yourself. It’s great to get the bigger picture and nuance if you have time.
Remember, I’m not a doctor or a psychologist. I’m just someone who’s dealing with a chronic inflammatory condition, ankylosing spondylitis, who enjoys digging into what we can do to help. Specifically what I’ve tried, what I found helpful and my read of the current research.
We’ll start with the study called: ‘Social media comes with good and bad sides, doesn’t it?’ A balancing act of the benefits and risks of social media use by young adults with long-term conditions’ by Ceri Wilson and Jennifer Stock from 2021 (view study).
A quote I quite liked from this one went:
“Participants also reported that reading about others living well with LTCs on online communities could be inspiring, encouraging and uplifting; however, reading about negative experiences could be distressing. This supports the descriptions in the literature of distress contagion from participating in online health communities (e.g. Fergie et al., 2015, 2016; Kohut et al., 2017; van Uden-Kraan et al., 2008).
The sharing and gaining of knowledge related to LTC/s through social media was also described by participants. With regard to online communities, participants talked about the mutual sharing of experiential knowledge related to treatments/medications and coping strategies.
This expands on Fergie et al.’s (2015, 2016) research, who described the useful sharing of research through social media and experiential information through social media-based groups for people with diabetes or mental ill health. However, as with the above descriptions of distress contagion, this sharing could have negative impacts. For example, sharing about declining health could lead to fear of their own future decline.”
I really love that section. It just gives such wonderful nuance and it reflects my own experience of trying to make sense of my own chronic condition online and on social media groups.
The first groups I encountered were some of the larger groups. I was going onto popular social media platforms and seeing the one which had the numbers, assuming that the bigger the hive mind the better. Though some of these groups had amazing moderators and lots of wonderful, supportive people, there was a lot of posting which was very negative.
I really understand that instinct. When you’re in pain, it can be cathartic to share those feelings, to feel understood and supported. There can be real benefit in that.
However, if you’re going through pain and reading about someone with the same condition as you, and how terrible their life is… how despondent they were feeling… how they feel there’s no hope… how nothing’s working… how no treatment is effective… it can send you into a really terrible downward spiral.
It can increase your own levels of rumination and catastrophising because suddenly you’re being primed with someone else’s distress. This is some they called “distress contagion” in this report, which is a great term.
Multiple studies show the power of the nocebo effect
The nocebo effect is the opposite of the placebo effect.
It’s negative expectations leading to negative outcomes that would no otherwise have been experienced.
So for example if you prime someone with negative information about a health protocol or a medication.
Let’s use the example of a painkiller. If there is big writing on the back that says “possible side effects,” and these are highlighted as – “possible side effects: headaches, nausea, vomiting, etc.” – you tend to find a massive, massive upswing in people reporting those side effects.
There is a brain-body connection that is so strong. In experiments where they have not highlighted the side effects, far less people have those issues.
There is a real element of priming that goes on with our brains.
Our brains are prediction machines. They are given inputs from out in the world, but also about our internal states. If there is an expectation of pain, but also conversely an expectation of relief from pain, while it’s not a miracle panacea, there can be outsized effects from this feeling of distress or positivity.
That’s why it’s so important for anyone struggling with chronic pain to really explore what some of those positive relationships are, to see if that can have an impact on their pain management.
We’ll move on to the next study. This is called “Social Pain and Physical Pain: Shared Paths to Resilience” by John A. Sturgeon and Alex J. Zautra (view study).
There are some good quotes from this:
“Greater social support has been associated with lower levels of pain intensity in response to painful experimental stimuli, and these effects have been noted regardless of whether the supportive other is physically present [44,45].
Meaningful social connections may also serve a protective role in reducing nervous system responses in response to pain and stress [44] and by engaging neural networks associated with more adaptive responses to pain, such as reward circuitry [45]. Individuals receiving social support also appear to be more likely to engage in prosocial behavior, protecting them against pain-related exacerbations in negative mood [46].”
“Similarly, positive emotions are among the most important predictors of effective pain adaptation [42,43], and are accessed significantly via one’s social relationships [32]. Positive emotional states have demonstrated a variety of benefits in both healthy individuals and in those with a chronic pain condition, including enhanced stress recovery [47], improved immune function [48] and better cognitive performance under stressful conditions [49].
Positive affective states also demonstrate a variety of pain-specific benefits, including reducing ratings of pain intensity [50], promoting adaptive cognitive responses to pain [51] and increasing the ability to persist in goal-directed behavior under painful conditions [52]. It is thus clear that positive emotional states are key predictors of positive pain-related outcomes.
However, the relationship between the social world and positive emotions is decidedly complex, particularly for individuals living with a chronic pain condition.”
“Although the presence of social support is a key ingredient in positive pain coping, the mere presence of supportive others does not guarantee either short-term or long-term positive benefit…. some individuals with chronic pain may show decrements in their physical or psychological function if their social network is excessively supportive, which may compromise the development of self-sufficiency and effective pain coping [53].”
“… some individuals with chronic pain may emphasize social validation of their pain above all other goals, as they may feel ostracized or isolated due to a belief that their pain is poorly understood by others.
However, this predominant focus on social validation has been associated with less positive functional outcomes, as it may come at the expense of attempts to remain self-sufficient [55]. For example, individuals with pain who experience more frequent solicitous behavior from their loved ones tend to show poorer adjustment to pain and a greater vulnerability to disability…”
There’s so much wonderful information to unpack there.
The overall take I get is that your relationships, social support and social network is vital when it comes to managing pain, whether you’re perfectly healthy or whether you’ve got a chronic condition.
Having those meaningful social connections actually reduces your nervous system responses to pain and stress.
We know stress is at the absolute root. It’s a foundational part of any long-term chronic, especially inflammatory disorder.
Anything which helps lessen that stress by having a good social network which lowers anxiety, gives people meaning and gives people that feeling of support, can have such profound effects.
From my own perspective, when I’ve really been struggling with a flare, for example, I would often find that if I was feeling terrible, but managed to go and see a friend, a really close friend, particularly a friend maybe who I could really be myself with and have a real laugh with, I would get some secession in pain.
It might not kick me out of a flare, but I would definitely notice a dramatically lower sensation of pain, particularly while I was with them. This was profound and it was consistent.
What this report identifies is that it is complex.
It highlights how positive emotions are one of the most important predictors of effective pain adaptation.
I strongly agree with this. Going back to that report on social media, if you are exposed to very negative emotions, humans as social creatures will take that on board.
If you’re struggling with your own pain, stress, anxiety and chronic health conditions hearing negative, negative, negative, that can have a detrimental effect on your own pain sensations.
The key here is to try and focus on those positive emotions and positive relationships where you have support.
Not support where someone only ever shares negative stories (“I feel terrible”… “life is terrible” etc).
Of course, a big part of friendship is doing that, it’s being there for one another, having that honesty, being able to offload.
But we’ve all come across relationships where that’s the only thing someone talks about, where everything is seen through a lens of pessimism.
This is not a criticism of those who approach life like that. I went through times where I thought that pessimism was a part of me and when looking at the world through a negative lens that felt natural and logical.
When I was able to reframe my thinking in terms of the things that are worth appreciating in the moment, it had a profound effect on so many things in my life, including my pain management and I like the way they’ve expressed this in this study.
They finish up on the idea that the mere presence of supportive others does not guarantee short or long-term positive benefit.
They go on to say individuals with pain who experience more frequent solicitous behaviour from their loved ones tend to show poor adjustment to pain and a greater vulnerability to disability.
What they’re talking about here is resilience and how there is a dangerous fine line between having a wonderfully supportive set of relationships, and these can in part be online as well as offline.
There are wonderfully positive social media groups, where people share success stories and great research and reasons to be cheerful. But there can also be situations where support errs on the side of coddling or helicopter parenting.
I’ve experienced this with a close friend where I really wanted to help them and I found myself just constantly saying, “Are you okay? How are you doing?”.
I got the sense (over time) that as well intentioned as it was, this was potentially making them feel worse. As if it reinforced that they weren’t, or shouldn’t, be feeling ok.
I think that’s what they mean in this report by “frequent solicitous behaviour from loved ones”.
Constantly checking in on them can inadvertently prime that person to feel worse.
So too can suggesting that they’ve been dealt a bad hand. It almost enables catastrophising by proxy, even though that’s the opposite of the intention.
I try to do that less and instead focus on what some of the positives are.
It’s hard to do but I found it really helpful even just reading this study. It gives pause for reflection in thinking, “Wow, I need to do that in both my own life and in the lives of the people I’m trying to support and help.”
Next study, we have “Assessing Beliefs Underlying Rumination About Pain: Development and Validation of the Pain Metacognitions Questionnaire” by Robert Schütze, Clare Rees, Anne Smith, Helen Slater, Mark Catley, and Peter O’Sullivan from 2019 (view study).
Just a quick quote from this one, which was:
“Worry and rumination are key psychological processes underlying pain catastrophizing, which is strongly linked to negative pain and health outcomes (Quartana et al., 2009). Metacognitions, or beliefs about thinking, have been shown to drive worry and rumination in people with anxiety and mood disorders (Fisher and Wells, 2009), suggesting they may underlie similar processes in people with pain.”
Again, just reaffirming the role that rumination and anxiety and catastrophising can have, that integral link between the two.
The mental and the physical are not these separate entities in the way that we’ve typically thought about them. They are so interwoven and interlinked.
I think that leads us nicely onto the next study, which is a hospital study called “Pain Catastrophizing is Strongly Associated with Subjective Outcomes, but Not with Inflammatory Assessments in Rheumatoid Arthritis Patients” by Hilde Berner Hammer and Till Uhlig (view study).
This one was a little harder to unpick, but my understanding was that this study involving patients with rheumatoid arthritis who were starting a new treatment.
It then followed up with them after one, two, three, six and 12 months.
What the researchers were looking at were a combination of things.
Patient-recorded outcomes: How did the patients rate their joint pain, how did they rate their overall health and their daily activities?
Clinical and laboratory assessments: The number of tender and swollen joints and the doctor’s overall assessment as well as blood tests, ESR and CRP which are blood inflammatory markers.
They also had ultrasound scans, so they were checking 36 joints and four tendons for signs of inflammation.
Finally, they also looked at pain catastrophising, assessing how negatively patients thought about their pain.
Out of 209 patients, 152 completed the 12-month follow-up.
So what were the findings for this one?
They found pain catastrophising was strongly linked to how patients reported their symptoms and their overall health scores.
However, it wasn’t linked to inflammation markers like swollen joints or CRP levels, which is interesting.
Patients who had high levels of pain catastrophising reported worse symptoms and health scores throughout the study (as in their sensation of pain was high).
The next part is really key.
Those who started with high pain catastrophising were less likely to achieve remission, a state with zero or very few symptoms at six and 12 months. So those people who were catastrophising didn’t get to pain-free (or remission).
This suggests that addressing this negative thinking could be important in treating rheumatoid arthritis effectively.
Just to add to this, there have been other studies where negative thinking and feeling primed or having an expectation has actually led to very strong physical pain markers being found.
This one was interesting because the reporting of pain for these patients was much higher when they catastrophised, but they weren’t necessarily always finding that on the scans or the blood tests. It’s tragic to think that they were having such high levels of pain and this in large part stemmed from how their brains were framing it.
There was an interesting quote on arthritis.org which contained a comment from Claudia Campbell, PhD, associate professor of psychiatry and behavioral sciences at Johns Hopkins Medicine in Baltimore, Maryland.
She believes, “We don’t think that people who catastrophize more only report more pain, but they actually experience more pain.”
That is very much in line with much of the research I’ve read on this.
Let’s finish up with one more study because I think this is such an important topic.
This one is called “Pain Catastrophizing in Rheumatic Diseases: Prevalence, Origin and Implications” by Mateusz Wilk, Olena Zimba, Glenn Haugeberg and Mariusz Korkozcorresponding from 2021 (view study).
This study is quite a whopper. It goes through a range of different rheumatic disorders from ankylosing spondylitis to rheumatoid arthritis to osteoarthritis and many other (largely) rheumatic conditions.
Some quotes I enjoyed from this.
This one relates to AS:
“Other studies have indicated a correlation between PCS (Pain Catastrophizing Scale) and elevated composite disease activity scores, such as Bath Ankylosing Spondylitis Disease Activity Index (BASDAI), emphasising the impact of maladaptive cognitive pain perception on achieving low disease activity and remission [54, 67].
Despite effective treatment of inflammation, individuals with possible central sensitisation may retain high disease activity scores. Moreover, a stronger perceived control over treatment was correlated with lower levels of catastrophizing thoughts, suggesting a potential link between perceived control and the degree of central sensitisation in these patients [70]. Higher pain catastrophizing was also associated with impaired HRQoL”
“Several analyses have highlighted the potential implications of higher pain catastrophizing on the disease course and patient-related outcomes. Most notably, it is consistently linked to a heightened perceived pain experience [42, 43]. A study by Lefebvre et al. [44] suggests that catastrophizing plays a crucial role in shaping how individuals remember their previous pain experiences [44].
Clinically, these findings imply that patients with higher catastrophizing scores may have a more precise recollection of their pain. While a connection between pain and catastrophizing exists, the impact of catastrophizing on physical limitations becomes more pronounced when acceptance levels are low [45]. In obese RA patients, higher PCS scores were associated with increased pain, reduced physical function, and a greater tendency to overeat [46].
Quality-of-life deterioration was consistently found to be associated with catastrophizing in various analyses [27, 43, 47, 48]. Berthelot et al. [49] reported significantly elevated Routine Assessment of Patient Index Data 3 (RAPID3) questionnaire scores in catastrophizers [49]. From a psychological standpoint, pain catastrophizing has emerged as a noteworthy mediator in the relationship between pain intensity, daily affect, and depressive symptoms [50].”
“… In certain studies, greater pain catastrophizing has been associated with a reduced likelihood of achieving remission [52, 53]. However, in another analysis, there was no independent association between higher levels of pain catastrophizing and the achievement of low disease activity.”
As with everything, there’s some nuance, some studies show different things, but overwhelmingly, from the studies I’ve looked at, the correlation between catastrophising and ruminating about the worst case outcome and increased levels of pain is strong.
Ruminating about the pain itself, feeling a sense of hopelessness, being surrounded by negative news and negative stories can increase pain levels, can decrease quality of life, can make life harder, can make chronic pain even more emphasised.
I think the best way to approach this is more knowledge. That’s why I hope studies like this help you as much as they help me.
What I take away from all of this research and my own experiences of dipping into social media groups and having good ‘real-life’ social friend groups is that it is important to have people who understand you.
As cliched as it might sound it’s also important to know that you’re not alone and that there are other people going through the same thing.
At the same time, make sure that you protect yourself and you put yourself in positive groups.
By that I mean groups filled with people who are sharing what’s working for them. People who are sharing their successes, people who are sharing some really good research that gives hope.
People who are celebrating the little wins and people who are there for you to support you and to help you understand that this isn’t a death sentence. This is something that can be managed.
Surround yourself with people like this and it will help you stay positive and reframe your mindset.
It’s about finding the right tribe of people but also making sure it is supportive and it is forward-thinking.
I think sometimes with the online world, the more extreme posts are (where a lot of negative emotion or conflict or disagreement or pain is expressed, which is totally understandable) the more clicks, likes, comments and exposure they get. Sometimes that can flood your social media feeds.
That’s why it’s important to find an approach that works for you.
I’m someone that does really seem to get affected by reading negative outcomes.
I remember when I was first on this journey, I was going on to groups and seeing people writing really long, heart-rending posts with suicidal ideation. I found it absolutely heartbreaking.
I could feel my own mood and my own thought processes going down an even darker spiral.
This can be really challenging, particularly when you’re new to your own diagnosis and you’re scared and overwhelmed.
If your primary input is lots of people saying, “there is no hope”, “this is the worst thing in the world”, “I don’t want to be alive”, it will have an affect.
I hope that the studies we’ve talked about here help emphasise why it’s so important to try and protect yourself from those sort of ruminating or catastrophising states.
Positive emotions, having meaning and having good social relationships (particularly in real life – online is no replacement for real life) is so, so important.
If you find yourself going on social media and just feeling rubbish, give yourself a break. Text a friend or call a friend or arrange a meetup and do something that makes you feel good.
I think I’ll leave it there. I hope you found this helpful. As ever, please do share it with anyone else who you think could benefit and do get in touch if you’ve got any comments or feedback.
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