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