The Tampa Scale needs amendment

There is a questionnaire used to supposedly identify ‘fear of movement’ called the Tampa Scale. While I would certainly agree that it is worth identifying which patients have wrong beliefs about their condition and the effects of exercise, I also have serious concerns over some of the elements of this questionnaire. It just doesn’t seem like a rational questionnaire, and yet is very widely used and, it seems, rarely questioned.

I’m going to start with my suggested alternative, then go over the items on the original Tampa scale that I think are not going to help identify mistaken beliefs that could be causing a patient to avoid exercise and activity.

Suggested alternative to the Tampa Scale (for identifying mistaken beliefs − obviously some are true and some untrue as in the original):

 

1. I need to move as little as possible to avoid injury 1 2 3 4
2. Just because something aggravates my pain that usually does not mean it is dangerous 1 2 3 4
3. Sometimes it is a good idea to exercise even though it’s painful 1 2 3 4
4. When people with pain gradually increase their level of activity, they often don’t experience increased pain 1 2 3 4
5. Although my condition is painful, I would probably be healthier if I were more physically active 1 2 3 4
6. Even though something is causing me a bit of pain, I don’t think it’s actually dangerous 1 2 3 4
7. Some people with chronic pain find that exercise reduces their pain levels 1 2 3 4
8. If I exercise less, I’ll get weaker and am then likely to experience more pain 1 2 3 4
9. Worries about injury put me off exercising 1 2 3 4
10. Pain always means I have injured my body 1 2 3 4
11. Pain always means I have injured my body 1 2 3 4
12. Simply being careful that I do not make any unnecessary movements is the safest thing I can do to prevent my pain from worsening 1 2 3 4

Now for my analysis of the original

The ones that make sense (ish):

3. My body is telling me I have something dangerously wrong. (I suppose ‘dangerously’ suggests an element of dramatization if the problem is not life-threatening etc… though surely more a sign of ‘catastrophising’ than movement avoidance?)

Similar to: 11. I wouldn’t have this much pain if there weren’t something potentially dangerous going on in my body.

 

7. Pain always means I have injured my body.

(Probably the most useful one in my view, as this is definitely false and a harmful view.)

 

8. Just because something aggravates my pain does not mean it is dangerous. (Very similar to number 7. Patients need to be informed this is true, if they are not aware it is. Though I would suggest amending it to ‘Just because something aggravates my pain usually does not mean it is dangerous’ because sometimes pain is a sign of danger, obviously! Pain can warn us we are about to tear or break something.)

 

10. Simply being careful that I do not make any unnecessary movements is the safest thing I can do to prevent my pain from worsening. (Does sound a bit extreme, and shows lack of awareness that inactivity may increase pain long-term.)

Related to: 17. No one should have to exercise when he/she is in pain. (Quite moralistic but I suppose passible. ‘Sometimes it is a good idea to exercise even though it’s painful’ would be better.)

 

14. It’s really not safe for a person with a condition like mine to be physically active. (Probably a wrong belief in most cases where the questionnaire would be used, so fair enough.)

The ones that are problematic either in general or for some conditions (such as Ehlers Danlos):

2. If I were to try to overcome it, my pain would increase. (Sounds like an unhealthy battle that might well happen that way! Pacing and acceptance of pain are surely more accepted approaches? How about ‘Gradually increasing my level of activity often doesn’t lead to increased pain’?)

 

5. People aren’t taking my medical condition seriously enough. (No comment needed surely?! Whoever thought that was a sensible one?)

 

4. My pain would probably be relieved if I were to exercise. (For many people this won’t be true, so strongly disagreeing is the rational option.)

The same goes for: 12. Although my condition is painful, I would be better off if I were physically active. (What does ‘better off’ mean? Why not say ‘healthier’? That would be true in more cases. Being physically active – another subjective term  – might make some people less happy due to the increased pain and fatigue and so ‘better off’ might not feel appropriate to them.)

 

6. My accident has put my body at risk for the rest of my life. (Ambiguous. Surely accidents do create a greater risk of re-injury in many cases? Or does it mean at risk of death, which probably would be a wrong belief?)

See also: 1. I’m afraid that I might injure myself if I exercise. (In some cases this might be highly unlikely, in other cases quite likely e.g. if you have EDS and are prone to dislocations and sprains, even during very mild exercise).

The same applies to: 9. I am afraid that I might injure myself accidentally.

A related one is: 13. Pain lets me know when to stop exercising so that I don’t injure myself. (Again, is this really unreasonable in all cases? Since when was completely ignoring pain a good idea?)

And: 15. I can’t do all the things normal people do because it’s too easy for me to get injured. (People with EDS are generally advised to avoid contact sports, for example, so again this is not going to be unreasonable in all cases.)

Also: 16. Even though something is causing me a lot of pain, I don’t think it’s actually dangerous. (Are we really advocating that people do things that cause a lot of pain? I’ve generally not been advised to do that, and indeed if something does cause a lot of pain that could be a sign you are about to or have injured yourself.)

 

Are you a medical practitioner or patient? I’d love to hear your views!

Do also check out my post on re-examining the concept of kinesiophobia in chronic pain patients.

kinga-cichewicz-woman-sitting-in-window-enclosure
Do you think my scale is a better one for identifying when patients are being inactive due to wrong beliefs? Comment below! Photo by Kinga Cichewicz on Unsplash.

 

Re-examining ‘fear of movement’ (kinesiophobia) in those with chronic pain

 

(This post is especially relevant to doctors and physiotherapists and others who work with those in chronic pain)

What many physiotherapists and doctors don’t understand about chronic pain

In medical jargon there is the expression kinesiophobia, ‘fear of movement’. I’ve always found this an odd concept. It is said that many chronic pain patients experience a fear of movement because of associating movement with pain. So, the assumption is that they fear pain. Those with chronic pain are, by definition, those who live with the most pain. It doesn’t seem natural to me to talk of fearing something that is already a major part of your life. If you wear a suit to work every day – you may dislike it, sure, but you wouldn’t fear it, would you? You might wear it only when obliged to do so, and wear super-casual clothes the rest of the time i.e. you may well limit your exposure to it, but fearing it would be unusual.

Chronic pain is something only those who experience it can truly understand. It isn’t accurate to think ‘well, I know what pain is, so chronic pain is just having that a lot of the time’ (which those without chronic pain tend to think either sounds awful or not too bad at all). Prior to getting chronic pain I regularly played full-contact rugby. I loved it. I loved tackling people. I didn’t mind the bloody lip, the bruises and feeling a bit battered. Doing this once a week was, however, NOT a taste of chronic pain in any way. Nor was ju-jitsu, or taekwondo, or boxing. Nor was period pain, or toothache, or a headache. The relentlessness (and total pointlessness of the pain) is not possible to imagine until it happens to you.

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Just because you’ve experienced pain, it doesn’t mean you know what chronic pain is like. (Photograph by Quino Al on Unsplash)

Imagine you enjoy sitting out in the garden when it’s sunny. One day it’s raining and someone asks you why you’re not sitting in the garden. Er, duh. It’s not much fun in the rain. Do you fear rain? No, it’s just not enjoyable sitting out when it’s raining. So why do some medical professionals really have a problem understanding that people’s preferences change when they live with chronic pain? If anyone wants me to live like I did prior to chronic pain, I want them to sit out in the rain, and enjoy it.

Movement avoidance isn’t necessarily due to fear of harm either

Now imagine you’re someone who enjoys going on walks and also reading. Imagine that you have the option to either read for a while or go for a walk while someone repeatedly stabs you in the neck with a fork, and you can’t stop them. I think I can guess what you’d choose. And what if someone tells you that, although the fork stabbing might be unpleasant, it’s not harmful. You’re still choosing reading, right?

Now what do you think about patients who avoid some pain-inducing activities, choosing to do something else instead?

Only when someone tells you that if you don’t choose the walk you’ll get unfit and get stabbed with a fork during even more activities would you reconsider.

head-in-clamp-pixabay
People need to be given a clear and meaningful reason to do a painful activity, otherwise it just won’t appeal. It sounds simple, but seems to get forgotten.

 

A common belief is that patients avoid movement because they believe pain signifies damage to the body. Well, I’m sure some people do, and it’s certainly right to point out that pain can be completely meaningless and unhelpful, as is often the case with chronic pain.

But that’s not necessarily going to make someone start being as active as they used to be, because some activities are just not appealing any more, or not as appealing as pain-free options. I get headaches watching films, so don’t do it as often as I used to, but have gained a great love for podcasts and audiobooks. I’m not scared of the pain watching a film brings on… I’d just rather do something else.

Of course, what really is an issue and what patients do need to know is that if they avoid all physical activity, they’ll lose muscle tone and may experience more pain in the long run. Knowing this will potentially reduce ‘movement avoidance’ in patients who are motivated by long-term goals; perhaps not so much others.

Also, I’ve come across a few things recently suggesting the role of physiotherapists when dealing with chronic pain patients is to get them moving more. Hmm. Well, if that’s what the patient wants, fine. I’m not totally sure, however, that everyone goes to a physiotherapist wanting to be persuaded to sit out in the rain more, or spend more time getting stabbed with a fork, to continue the metaphors.

christopher-burns-unsplash-tennis-player
I’m doubtful as to whether patients attend physiotherapy in order to be persuaded to do more physical activity despite the pain. (Photo by Christopher Burns on Unsplash)

More exercise doesn’t always mean less pain long term

As far as I’m aware, it has not been proven that people with all types of chronic pain will be able to get back to their previous level of activity if they do it gradually. I’ve really tried, both with sudden increases in activity and the opposite, gradually increasing walking time by just one minute per month. In neither case did my pain levels decrease and in neither case was I able to keep up the increase, as the increased pain interfered too much with my sleep. I recognise that many people may find that doing more activity builds muscle and enables them to do more with less pain: but it can’t be the case for absolutely everyone.

For me and for many others, limiting movement is about keeping pain levels bearable and being able to work, sleep and enjoy life as much as possible. It’s not always about fear or a poor understanding of pain, or even poor motivation levels. It is a way of coping and it is a pain management system. It might be the best option for some of us, and though exercise-loving physios may struggle to understand, life’s not all about physical activity. Since developing chronic pain, I’ve really enjoyed doing more art, writing, reading and listening to the radio. I do what exercise I can each day, ideally a short walk in my area looking at the nice gardens and the wonderful lake, and sometimes chores and a few all-body exercises. Chronic pain sometimes requires adaptation and change, and perhaps medical professionals should take the time to delve a little deeper into why a patient is avoiding some things, what could help them to do it again, and whether they have found any alternatives.

Related links:

 https://stickmancommunications.blogspot.co.uk/2017/01/hypermobility-reluctance-to-exercise.html

 

How to prepare for a physiotherapy (or hydrotherapy) appointment

Guest post

This article is specifically for those with chronic pain (of any type but especially from joint hypermobility syndrome/Ehlers-Danlos type III). While some people find that physiotherapy goes smoothly, others (especially with EDS) can find it very problematic. This post aims to help eliminate some of the problems that might occur by proposing novel ideas on preparing for your physio appointments.

Clarify the aims

Ask what the point of things are. Is this a test of your muscle strength? Are they checking if you’ve torn anything? How will the exercises they’ve suggested help you? Do they think your pain levels will decrease as a result of the exercises? After months and months of physio, with no results, I felt very in the dark about what it had all been about.

physio-1778034_960_720

Practice saying ‘no’ (politely)

Going to your first physiotherapy session can be much like P.E. at school. Someone is telling to do various movements, and this might not have happened since those days of smelly changing rooms and uncomfortable P.E. kits. It can be hard to realise this key fact: YOU ARE NOW AN ADULT AND THE PHYSIO IS NOT YOUR P.E. TEACHER. You might think this is obvious, but, trust me, it is so easy to feel you have to do whatever they say. I know I did, for several years, and deeply regret it! The truth is, you know your body and your pain levels much better than they do. If you know they are asking you to do something that will leave you in agony for the rest of the day, say ‘no’. If you know you’ve reached your limits, but they want you to do more, say ‘no’. Don’t just do it and then go home and repeatedly beat yourself up or mutter obscenities about the physio. Go and get some assertiveness self-help books if need be.

You can say things like:

‘I’d rather do that exercise later, when I’ve had chance to recover from this appointment.’

‘I’m not keen on doing that, as it will cause me a lot of pain. Is there an alternative?’

‘I’d like to stop now as I think I’ve reached my limit. Perhaps you can show me the other exercises at my next appointment.’

‘Please can we move more gradually? I’m experiencing very high pain levels already.’

And if you find yourself mutely obeying and regretting it later: don’t beat yourself up. I did it for years. I still am: it’s just so easily done.

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Learn about pacing, and be prepared to mention it

Pacing, in this context, is about moving gradually, and avoiding ‘boom and bust’, which is when you do too much, have to rest, then feel better and do too much again, in an endless cycle. Physiotherapy can perpetuate this cycle, if you’re regularly asked to do too much. The physiotherapist should only be asking you to increase activity/exercises very gradually. If that’s not the case, you may wish to ask if they can go more slowly, as you feel your pain levels are getting out of control.

Don’t prioritise physio exercises over your actual life

By this, I mean if doing the physio exercises is leaving you in too much pain to cook, clean, see your friends, or work, there is a problem. You are doing too much, and it’s going to make you depressed and/or frustrated with life. Tell the physio what is going on. Tell them that you aren’t willing to sacrifice your life to do their exercises. Discuss with the physio whether some everyday activities can stand in for certain exercises.

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Don’t allow your pain levels to become severe

If your pain levels feel too high, tell the physio. Give them a pain score out of ten relating to the exercises they are asking you to do. They’re probably not going to ask you about your pain levels, and they can’t read your mind. I once had a physio who kept pushing me to do more and more. I felt she was dissatisfied with my progress, and told her my pain levels were at 9/10 all the time so I really was trying. She seemed quite surprised, and sympathetic, and enquired about my pain medication. You might need to see your GP about exploring new methods of pain relief, if you haven’t already. Physio is meant to improve your life: it’s not an endurance test.

Evaluate the process and use your judgment

If you feel something isn’t working, say so. Consider cutting it out. For me, hamstring stretches often caused pain which would last for the whole day. I wasn’t feeling any benefit from them. I cut it out, and never looked back.

You might even find that physiotherapy as a whole isn’t helping. If you get to the point where it seems pointless, perhaps having seen a few different physios over a few months, be prepared to stop going. Physiotherapy doesn’t help everyone.

Do, however, maintain as much activity as you can, which is very important if you have JHS/EDS III. Even a month of less activity can lead to increased pain and disability in the long run: something I experienced the hard way. Set yourself goals for each day so that you maintain (or, if possible, improve) your strength and fitness. On your last physio session, ask for exercises to tone pain-free parts of your body, if appropriate.

Or if you feel you’ve got the picture and can continue gradually increasing the physio exercises by yourself, discuss it with the physio. They might agree you can just continue on your own, saving you from attending further sessions, which can often be quite a big hassle for someone with JHS.

Other useful questions related to JHS/EDS:

Do you think my proprioception/balance and spatial awareness may need some work?

Do you think I might need some guidance on how to avoid over-extending my joints?

Could you give me some exercises to ensure I’m strengthening all the joints in my body, not just the painful ones?

Could this exercise/stretch aggravate my tendency to over-extend this joint?

Are you a physio? Or have you done physio? Have something to say about this article? Leave a comment below.

Related links:

A form you might want to use after your first appointment to prepare feedback for your second (I highly recommend doing this!):

http://stickmancommunications.co.uk/epages/747384.sf/en_GB/?ObjectPath=/Shops/747384/Products/LFCM04

An article aimed at physios: http://www.csp.org.uk/frontline/article/stretching-point-hypermobility-joints-physiotherapy-research#comment-form

EDS-specific advice on preparing for a doctor’s appointment: http://www.edhs.info/#!about1/c21rn

Another article aimed at physios on communicating about chronic pain to patients: https://healthskills.wordpress.com/2016/09/26/i-know-my-pain-doesnt-mean-im-damaging-myself-but-i-still-have-pain/

An article on miscommunication between patients and physios:

http://stickmancommunications.blogspot.co.uk/2017/01/hypermobility-reluctance-to-exercise.html

 

Chronic pain: an unrecognised taboo

On the whole, talking about the chronic pain I experience tends to be greeted with a resounding silence, and/or rapid change of the subject.

If you’d asked me ten years ago to name taboos in the UK, I’d have said things like ‘female masturbation’ and ‘being transgender’. Twenty years ago, I might have said ‘being homosexual’. Particularly in some circles, these things are still somewhat taboo, but much less than they were. Now I’d include chronic pain, but only because I live with it. If you don’t, you’re probably happily oblivious of the awkwardness around the topic.

The Cambridge UK dictionary defines ‘a taboo’ as ‘an action or word that is avoided for religious or social reasons’. Having suffered from chronic pain for several years now, I’ve only gradually become aware of how often I refrain from mentioning pain, and why. On the whole, talking about the chronic pain I experience tends to be greeted with a resounding silence, and/or rapid change of the subject. No doubt this is why I often avoid mentioning it, or mention it briefly and rapidly change the subject myself.

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Living with chronic pain can be a lonely experience when it’s hard to talk about it.

Why the awkwardness?

Are people awkward about chronic pain because they don’t know what to say, like when someone’s parent has died? Or is it because they think you shouldn’t mention it; you should be pretending everything is fine? Hard to know really. Here are my thoughts on possible reasons why people react strangely to talk of pain:

  • Chronic pain, like death, old age and hospitals, is something most people prefer to ignore until forced to confront it. Discussion of these topics causes a sense of unease that people want to avoid.
  • People want to ‘save’ those with chronic pain from talking about something that seems very personal, so strive to change the topic.
  • People are worried about either sounding pitying or heartless, so say nothing or change the subject.
  • Actually, people are only a little awkward but the chronic pain sufferer is expecting awkwardness and that magnifies it in his/her mind.

There’s always the worry that silence means something negative like ‘you need to man up’, especially after actually receiving some rude and inconsiderate comments along these lines in the past.

Then there are other reasons why people with chronic pain don’t talk about it:

  • Fear of sounding like you’re complaining and fishing for sympathy.
  • The complexity of the subject, which can only really be covered fully by a long conversation.
  • Fear of sounding ‘soft’.

This article sums up brilliantly the many reasons why revealing a chronic pain condition can make a person feel very vulnerable: it can feel like you are in a no-win situation. But the less you say (or are able to say, before the topic is changed!), the more likely people are to jump to the wrong conclusions. The more you can explain, the more people are likely to gain understanding.

Why we all need to help end this taboo

The trouble with any taboo is that it creates repression and shame. People feel abnormal and are unable to obtain the benefits of discussing something important to them, such as compassion, getting useful suggestions, and that feeling of carrying a lighter load. And the subject of the taboo remains poorly understood, shrouded by prejudices. Estimates of those living with chronic pain vary, but it is undoubtable that the percentage is high: about 7.9 million people in the UK experience moderately or severely limiting chronic pain (between 10.4% and 14.3%) [1]. How many people do you know with chronic pain? Does it match these statistics? If it doesn’t, then maybe you know some people who are living in the silence of this taboo.

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If chronic pain were visible, perhaps life would be easier for those living with it…

We Brits are well-known for a ‘grin and bear it’ attitude and for euphemisms. We say things like ‘things have been better’, when really we mean ‘things are terrible’. Is this helpful when it comes to chronic pain? Well, there’s certainly a need for much ‘patient endurance’, as chronic illness writer Toni Bernhard puts it. And sometimes we do smile, in spite of the pain, and we must. But we shouldn’t feel pressurised to pretend everything is fine if we feel unhappy. We shouldn’t feel unable to set boundaries, to pace ourselves, and to use mobility aids or other aids which ease our burden. Most importantly, we should feel ok about sharing this struggle, this massive part of who we are.

And with 69% of those with the severest level of pain experiencing anxiety or depression [2], improving the social conditions faced by these people should be a high priority. Feeling that pain is taboo isn’t going to lift anyone’s mood – quite the opposite.

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69% of those with the most severe pain experience anxiety and depression, which could be reduced if there were sympathetic listeners on hand!

How can we get there? If you live with chronic pain, try to start sharing when you can. And if you don’t live with chronic pain, be ready to listen, to show some sympathy, and to discuss this issue which has been pushed into the shadows for far too long.

I’ve started talking more about pain, talking about it whenever a good opportunity arises. I’ve started resisting the urge to not talk about it. And you know what? It feels good. It feels a bit revolutionary. It feels like being myself and like opening the door of understanding, even if merely by an inch.

Related links:

http://sufferingthesilence.com/#sthash.QJKIOsPo.dpbs

http://blog.allsup.com/2014/09/nfmcpa-stigma-persists-for-people-with-fibromyalgia-chronic-pain-conditions/

http://www.dailymail.co.uk/femail/article-3204061/Young-people-invisible-chronic-illnesses-like-HIV-Lupus-reveal-conditions-world-new-portrait-series-prove-don-t-suffer-silence-shame.html

https://wordpress.com/read/blogs/120574110/posts/996 a personal description of the advantages of telling people about a health condition

https://wordpress.com/read/blogs/67332141/posts/796   on the stigma of autism

https://wordpress.com/read/blogs/116356880/posts/220  on the stigma of mental health issues

Scholarly articles/research related to this topic:

http://anthropology.mit.edu/sites/default/files/documents/jackson_Stigma.pdf

http://etd.lsu.edu/docs/available/etd-11182013-152753/unrestricted/rlang.pdf

http://www.ncbi.nlm.nih.gov/pubmed/24548852

Other references to chronic pain as a taboo:

http://mikscarlet.com/the-last-taboo-pain-why-does-it-hurt-us-to-admit-to-it/

http://leeockenden.com/specialties/chronic-pain/

http://www.canadianpaincoalition.ca/media/chronic_pain_final_2.pdf

If you would like to suggest a related link, email me!

References

[1] Prevalence of chronic pain in the UK: a systematic review and meta-analysis of population studies by A Fayaz, P Croft, R M Langford, L J Donaldson, G T Jones, http://bmjopen.bmj.com/content/6/6/e010364.full

[2] The Health and Social Care Information Centre, Sally Bridges, 2012 http://content.digital.nhs.uk/catalogue/PUB09300/HSE2011-Ch9-Chronic-Pain.pdf