“Catastrophising” makes rheumatoid arthritis pain worse

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A new study study presented in early June at the annual congress of the European Alliance of Associations for Rheumatology (EULAR), has shown that catastrophising makes rheumatoid arthritis pain worse. 

No kidding. I think we all know that, right?

What doctors don’t seem to know is that most of us are not “catastrophising”. 

The study also included patients with other forms of inflammatory arthritis, including ankylosing spondylitis and psoriatic arthritis.  Interestingly, those with ankylosing spondylitis gave similar results to those with RA, but that catastrophising makes pain worse was NOT shown for those with psoriatic arthritis.  I’m thinking the study is likely very flawed.   But let’s press on.

What is pain catastrophising?

Firstly, lets define “catastrophising” in the study’s terms:  Catastrophising is “the tendency to report pain experience in exaggerated terms, to ruminate about it more, or to feel helpless about it,” 

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Study coauthor Mateusz Wilk, MD, a physician in the division of rheumatology and immunology at University Hospital in Krakow, Poland, told conference attendees that “This is not about experiencing actual pain but rather the cognitive and emotional processes of thinking your pain is worse than it is,”.

Hmmm.  All of that is coming disturbingly close to “its all in your head”, right?

Seems to me that doctors are just coming up with new ways to say the same old offensive thing.

The most important question I wish to pose is: How exactly does Dr Wilk decide if a person is catastrophising OR if the pain truly is severe? 

Most of us who have rheumatoid arthritis have experienced severe pain.  Some of us experience severe pain rarely and some of us experience severe pain daily, but we all know what severe pain feels like. 

By most pain scales a “7” and above is severe, and most of us have gone there and higher on a regular basis. 

But this doctor and this study is saying that we really are having say, a “5” pain, but with our “catastrophising” that becomes a “7”.

Ok.  I’m sure that’s true for some people.  My guess is a small minority of people with inflammatory arthritis.

It’s absolutely NOT true for all people with rheumatoid arthritis. But studies like this teach doctors that we are all catastrophising, and we all need some cognitive behavioural therapy rather than medication to relieve that pain.  I’m all for CBT and learning meditation to help manage pain. But severe pain needs to be acknowledged and treated as severe pain…not dismissed as catastrophising.

Rheumtologists are always huffing and harrrring that “the bloodwork is normal” and there’s no signs of inflammation so you shouldn’t have pain.  This theory explains that very nicely, so I can see this being adopted very readily.  But is that a good thing?  I think not.

How to decide if someone is pain catastrophising

But let’s go read the study and find out how they determined who was catastrophising and who wasn’t. That’s the key to this research.

They asked each participant two questions and asked patients to rate them from 0 (never) to 6 (always).  Scores of 4 or more were considered “catastrophising”.

These are the questions.

  • When I have pain, I feel I can’t stand it anymore.”
  • “When I have pain, I think it’s never going to get any better.”

Um, wow. These seen like very stupid questions to me.  When I’m in severe pain I DO get to the point where I can’t stand it anymore.  I have a breaking point and a few days of severe, constant pain will get me there.  I do not believe that expressing that I can’t stand level “8” pain anymore demonstrates catastrophising (necessarily).   It seems like a pretty normal response to me.  I think this statement is much more likely to indicate severe pain than catastrophising.

If I have mild to moderate pain I can stand it for a very long time.  I live with mild to moderate pain daily and I have a name for mild to moderate pain:  I call it a GOOD day.

I don’t get distressed with this level of pain.  But if pain is severe, and doesn’t stop and you have no pain relief, I think saying you “can’t stand it anymore” is an absolutely reasonable response. 

Question number two “I think its never going to get any better” is a slightly better question, in that it indicates a slightly more negative thought process.  But still a very  normal thought process. 

We all know that flares come…and they go. But what if that flare has been going for weeks or months? Then feeling like its never going to get any better is reasonable. I know that when I have megaflares that go on and on I start to wonder if this is just going to be normal now, or if the pain will ever go back to my previous baseline.  This too, seems reasonable to me. 

Or what if you’re talking about your long-term prognosis…it could mean that you know that this pain will come and go, but it will always come back, it will always be something you need to deal with, and that idea is exhausting so.  I don’t see that as unreasonable either.  And I don’t see that it necessarily indicates catastrophising.  It can also indicate resignation, acceptance, adjusting to reality.

Two rather banal questions aren’t a great way to assess a patient’s psychological makeup and outlook.  Especially when drawing a conclusion that a patient is catastrophising can be catastrophic for their treatment!

If you’re going to accuse patients of catastrophising you need a much better way of measuring it. 

To be honest, for anyone who lives with severe, constant chronic pain, what some doctors call catastrophising is a pretty normal response. 

Most of the time I’m resilient. I don’t focus on my pain. I don’t look forward into an endless pain-filled future. I do not get anxious and upset about what the future may hold or wonder if the pain will get worse, or if I’ll be able to cope. I know those thoughts aren’t going to help and I stay very firmly grounded in the present moment.

I learned meditation techniques that help me stay present and help me manage pain.  I approach my life in a very purposeful and mindful way.  I do stretches and exercises every day to maintain my strength and function (to a degree). I have accepted my pain, I have accepted that severe pain that few people will ever understand is going to be part of my life every single day, for the rest of my life.  Those thoughts do not cause panic or anxiety. They are truths about me. 

I do not catastrophise in any way, shape or form.

But some days, when I’m exhausted and life has thrown too much at me and then a megaflare kicks in and the pain medication isn’t touching it, the pain gets me down. Sometimes I get depressed.  Sometimes I feel sorry for myself and wonder “why did this happen to me?”. 

That would be considered catastrophising.  But I think that’s a very normal, very human response to the kind of pain that I live with. 

If I felt that way every day and I was allowing those thoughts to dominate, then I would agree, that my mental health was making my physical pain worse.  But for a person who lives with high impact chronic pain to feel this way from time to time is absolutely normal.  What they need is pain relief, not psychotherapy.

And here’s the really important thing – the severe pain came first.  The emotional reaction, second.  Its not a chicken/egg thing…pain causes the negative emotions. The negative emotions don’t cause the pain. 

At least for me.

But if I did this study, I may well be classed as a catastrophiser if I answered these questions on a rough day.

So this study is pretty rubbish as far as I’m concerned.  You would need a much more comprehensive questionnaire or assessment to determine who does and who does not catastrophise. 

The whole pain sensitisation theory and catastrophising has become so popular in recent years that now every person who is in pain gets treated as if they have a sensitised pain system, or a comorbid mental illness.

That’s true for some people, not all people. 

I lived with someone who catastrophised.  I found it extremely difficult to deal with.  They would make mountains out of molehills.  They would carry on and on about the pain, they would work themselves into a frenzy of anxiety.  They would demand to be taken to the emergency room when I knew that nothing would be done for them and we’d just be sitting there for eight hours and given Panadol.  I found it exhausting, but I worked with them and taught them techniques to not dwell on the pain or allow panic to take over. I am a trained meditation teacher.  It takes time to learn these skills.  And commitment.

Point being, a catastrophiser is a very obvious thing.  Usually, you’ll find catastrophising in someone new to pain. Not in someone who has been living with daily pain for 15 years.  Most people who live with high impact chronic pain have learned these techniques and do not complain of pain unless it is severe.

To ask someone two questions and then classify them as a catastrophiser, to say that their pain is not that severe, they are just exaggerating, is doing a great disservice to all chronic pain patients.  And research like this is encouraging that approach. The end result is that their pain will be dismissed and minimised and under-treated.

If you’re going to label someone a catastrophiser you need a far better way to measure the “catastrophising” than asking two rather obtuse questions. 

These days every physician, physical therapist or psychologist immediately assumes that someone who is living with chronic pain is a catastrophiser.  They have read the central pain sensitisation theory and they “know” that chronic pain is not caused by tissue damage, but a nervous system dialed up to “11”.  They also “know” that people who live with chronic pain avoid exercise because they’re afraid of the pain getting worse, and they’re afraid of doing damage to themselves if they exercise.

NONE of that is true for me. NONE. Which means I can’t get the treatment I need and I am constantly patronised by health professionals.

Dear medical professional, please take a thorough history first. Assess my behaviours and personality type before you slap a diagnosis on me! 

That’s actually your job. We are all very different people. There are people who catastrophise and won’t get out of bed if they have even a little pain, they are a tiny minority of the arthritis population. There are people who won’t exercise because they’re convinced it will make their pain worse, but here’s the thing, for some people exercise DOES make their pain worse. You also have to accept and acknowledge that as fact.  And yes, some people’s mental makeup means that they will wallow in their pain and play the victim.  Again, a small minority of people with arthritis.

So please, do not treat all patients as if they are catastrophising. Especially not on the basis of studies like this.  Some people you encounter will catastrophise, you should be able to recognise them very easily by their behaviours and the things they say.  Most of all LISTEN to the patient in front of you, don’t come in with pre-conceived ideas like “all patients catastrophise and that is the cause of their chronic pain”.

It’s not fair and you’ll be doing you’re a patient a huge disservice because you won’t be giving them the treatment they need.  Not to mention your patient will leave your consult feeling dismissed, demeaned and that their pain has been minimised and ignored.  And they will still be in terrible pain.

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