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.

 

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.

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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