I have a hypermobility syndrome (probably EDS Hypermobility type). The Hypermobility Syndromes Association's topic for the month is Exercise. So I thought I'd write this blog I've been thinking about for ages.
I've seen loads of physiotherapists, and been told in many different ways that I need to exercise. Which is true, but also not helpful. It took me a long time to discover these little nuggets which made 'exercise' both possible and helpful for me - I share them in case they help you too:
1. Housework can count as exercise. But only if it's done with poise and control. Not if it's in 'desperate flop', or 'zombie on adrenaline' modes..
2. Exercise doesn't have to include running and sports and impossible things. Actually exercise can be almost any moving with control and poise. Things like sitting up with the spine in nice alignment for a few minutes. Or brushing my teeth while standing with my weight properly on both feet and my butt muscles engaged. And I love sitting on my gym ball! Little and often and with a posture focus was key for me.
3. Focusing on doing a physio exercise perfectly - and stopping when I can't control it properly is far more effective for me than pushing to try and finish the reps and then being unable to function.
4. 'Pain' has different meanings for different people. For physio's it usually includes 'that achey feeling when you use your muscles'. For me it meant 'uh oh, this hurts in ways that are not good and can last for days/indicate injury' - muscle ache was classed as 'whoop! I must be doing it right!'. I now know to be more specific.
5. 'Push yourself' doesn't mean 'keep going until you are so exhausted you cannot function for a month, or are in screaming agony for days, or collapse.' Even though it sounds like exactly that. It means 'keep going until you are at the limit of your comfortable - and start building slowly from there.' (You would not believe how long it took me to figure this one out!)
6. 'Do these exercises' is the start of a process - not a statement that inability to complete them means total failure. When the physiotherapist says 'Do these exercises' it sounds like they mean 'do them or I will brand you as not trying hard enough, and not wanting to improve, and spend the next lesson lecturing you so you feel really disheartened and not-listened-to.' Actually they often really mean 'try these exercises as a starting point and as we see how you react we can adjust them to find out what works for you.'
In trying to work out how to get past a physio's fear of me giving up, I came up with this form:
Basically if I can't do what I've been asked, or it leaves me unable to function for days, or worsens the pain for days, then I write the exercise, how many reps/how long I did it for, and what the effect was. Then (once I've recovered) I try again - but with fewer reps/shorter time/variation of the exercise. And record what I did - and the effect. And I keep tweaking the time til I find a level that means I recover within an hour/have acceptable side effects. Then at my next appointment, my 'I can't' turns into 'I've put a lot of time and effort in, and look what I've discovered I can do!'
These 6 realisations have been a huge help for me: I have learned to use my body in better ways, and built strength and stamina, and can manage my pain a lot better than previously (no, it's no cure, but it really has helped). Hopefully reading this will help someone else too. Whether it is helping someone with a hypermobility syndrome (or other condition causing long term pain and needing exercise) get the best out of their physio - or helping a physio to understand their patient.
The leaflets and forms mentioned in the images above include a range of other common misunderstandings which I wish I'd known about sooner. They are all available from Stickman Communicaitons - along with the 'problematic exercise form' - which is available both as a printed copy and as a download.
I've seen loads of physiotherapists, and been told in many different ways that I need to exercise. Which is true, but also not helpful. It took me a long time to discover these little nuggets which made 'exercise' both possible and helpful for me - I share them in case they help you too:
1. Housework can count as exercise. But only if it's done with poise and control. Not if it's in 'desperate flop', or 'zombie on adrenaline' modes..
2. Exercise doesn't have to include running and sports and impossible things. Actually exercise can be almost any moving with control and poise. Things like sitting up with the spine in nice alignment for a few minutes. Or brushing my teeth while standing with my weight properly on both feet and my butt muscles engaged. And I love sitting on my gym ball! Little and often and with a posture focus was key for me.
3. Focusing on doing a physio exercise perfectly - and stopping when I can't control it properly is far more effective for me than pushing to try and finish the reps and then being unable to function.
4. 'Pain' has different meanings for different people. For physio's it usually includes 'that achey feeling when you use your muscles'. For me it meant 'uh oh, this hurts in ways that are not good and can last for days/indicate injury' - muscle ache was classed as 'whoop! I must be doing it right!'. I now know to be more specific.
5. 'Push yourself' doesn't mean 'keep going until you are so exhausted you cannot function for a month, or are in screaming agony for days, or collapse.' Even though it sounds like exactly that. It means 'keep going until you are at the limit of your comfortable - and start building slowly from there.' (You would not believe how long it took me to figure this one out!)
6. 'Do these exercises' is the start of a process - not a statement that inability to complete them means total failure. When the physiotherapist says 'Do these exercises' it sounds like they mean 'do them or I will brand you as not trying hard enough, and not wanting to improve, and spend the next lesson lecturing you so you feel really disheartened and not-listened-to.' Actually they often really mean 'try these exercises as a starting point and as we see how you react we can adjust them to find out what works for you.'
In trying to work out how to get past a physio's fear of me giving up, I came up with this form:
Basically if I can't do what I've been asked, or it leaves me unable to function for days, or worsens the pain for days, then I write the exercise, how many reps/how long I did it for, and what the effect was. Then (once I've recovered) I try again - but with fewer reps/shorter time/variation of the exercise. And record what I did - and the effect. And I keep tweaking the time til I find a level that means I recover within an hour/have acceptable side effects. Then at my next appointment, my 'I can't' turns into 'I've put a lot of time and effort in, and look what I've discovered I can do!'
These 6 realisations have been a huge help for me: I have learned to use my body in better ways, and built strength and stamina, and can manage my pain a lot better than previously (no, it's no cure, but it really has helped). Hopefully reading this will help someone else too. Whether it is helping someone with a hypermobility syndrome (or other condition causing long term pain and needing exercise) get the best out of their physio - or helping a physio to understand their patient.
The leaflets and forms mentioned in the images above include a range of other common misunderstandings which I wish I'd known about sooner. They are all available from Stickman Communicaitons - along with the 'problematic exercise form' - which is available both as a printed copy and as a download.
My rehab lady really appriciated the detailed notes I took in to show her each time, explaining what I did and didn't do and why. She said a lot of patients just lie to her, and it is great to see someone who is really putting the effort in.
ReplyDeleteIt was also a great record for me of how far I had actually come on the journey.
I do think that physios should be trained to communicate better during their qualifiications, they really can do a lot of damage through poor word choices.
This is a great post! Thank you :-)
ReplyDeleteIt explains a lot of things that I didn't understand.
I've struggled with physio - I only got a couple of sessions with the GP-related one and they didn't seem to know anything about hypermobility and ignored my questions (or feedback about how it went). Ditto attempts at the local private sector (the ones I was quasi able to afford if I went without food for a day a week!)
Or the chiro that I think panicked at how messed up I was and heaped loads of exercises on me which I didn't stand a chance of doing regularly...
How do you prioritise which part to work on first? My fatigue is so very bad I'm never really able to do exercises properly (plus attention problems from head injury) but the "little" exercises don't build any progress either. So much of me is weak and unstable that doing exercises for one part seems to hurt another part - but I don't have the energy or strength to be working on all of them at once.
I don't know how to pick which part to work on first.
for instance, I can't do planks, push ups or anything hands-and-knees because my shoulders are too unstable. I tried focussing on shoulders but they never strengthen up enough to make much difference.
The fatigue is such a problem for me. I have to nap after strolling to church, let alone doing any physio. I want to cry at the thought of exercise before I even start.
Any ideas or advice on how to start the ball rolling when you are so fatigued that just sitting and breathing makes you feel ill and want to cry?
I feel stuck in a catch-22!
(It all got much worse a few years ago after a bout of influenza. I can't seem to recover my basic fitness and strength enough to do the rehab/physio exercises for me pre-existing hypermobility.)
I don't have access to a HMS-knowledgeable physio and GPs are beyond useless (as was the rheumy who diagnosed me.)
Anyone else find physio becoming impossible due to fatigue?
I totally understand what you mean! - so many things you need to address but simply not enough energy to do it. I can't give medical advice but personally I found that I had to 'start from the middle and work outwards' - so first working on core stability (things like sitting on a wobble cushion for a few minutes at a time - gradually doing longer until it is easy - then starting to move arms/legs while sitting with my spine in a good position to make it more challenging....then progressing to sitting on a gym ball....and then starting to work on shoulders and hips. It is only fairly recently that planks and other hands/kness type exercises. Core work also seemed to help my fatigue - and you can even bounce on an exercise ball for a cardiovascular workout! (once you've got the hang of sitting on it of course!) ...I don't know if this will help you, but hopefully you find something that does.
Delete:-) Thank you. It helps to hear how someone else understands, you know?
DeleteThe idea of bouncing on an exercise ball made me giggle. I'd never have thought of that, but it sounds quite cool and "do-able" as cardio goes.
I'm going to keep re-reading this post/article - it's given me quite a bit to think about.
Excellent blog!!
A wheelchair using bendy friend started doing 'aoerobics' style exercises while bouncing on a gym ball - it seemed a genius idea so I tried it and loved it. - put some lively music on and bounce away - over time adding various arm movements and bounce variations to use different muscles :D
DeleteI wonder how you are getting on now, Anonymous. These things depend on a lot of variables but it sounds to me like maybe my approach might help you. Physio got me nowhere, increased my pain levels and reduced my ability to do everyday things. I decided to really focus on everyday things and develop a pacing regime I could stick to. For you, this would mean working out what you can reasonably manage each day with rest breaks. Once I figured this out, things went a whole lot better. You might find that doing small tasks with lots of rest breaks really helps (I think Hannah has some posts about this too). Anyway, really hope you're ok x
DeleteYour right that housework can count as exercise! I'm a regular gym user and love to run, but I still feel well exercised after giving the house a good clean, and feel like I need a sit down with a cup of tea once I'm done. Most people don't think of it as exercise though.
ReplyDeleteAlberto Lawrence @ Institute of Sport Physiotherapy
Yes I got into a kind of disagreement with a specialist once on this point. I can only keep pain manageable by not walking more than 25 minutes a day in total. Some days I go out for a walk and other days I cook or clean (I find that when I cook or clean, I walk about one third of the time so I can cook for about 1 hour and a quarter). The specialist told me cooking and cleaning don't count. That made no sense to me. I always do the maximum I can, but it's essential I include cooking and cleaning or I'd easily overdo things and end up in boom and bust. Also, I wish physios would consider practical applications for exercises so that I can get something done while doing the exercise! In the early days I'd do their exercises and then be unable to cook, clean or go out. Now I know I don't have to do that.
DeleteActually cleaning isn't always one-third walking, sometimes it's half. I figured them all out eventually, and I now manage things so well I rarely get unmanageable pain.
DeleteI have had the same issue with my physiotherapist. It is important to voice your concerns and limitations during your first appointment, and to make sure that he or she is listening. Once my physio got to know me a bit and realized that I was there to work as hard as I could, all was great.
ReplyDeleteEmmett Fletcher @ CK Physiotherapy
Oh, just came across this article and forwarded to our physiotherapy team at HealthClues. Learning how patients sometimes perceive the simple and routine tips can be quite helpful in developing good rapport and understanding.
ReplyDeleteA lot of friends of mine also make programmes for exercise with me but when the time comes I am overloaded with the work and in the end have to visit Physiotherapy North Ryde to get rid of pains that I have while sitting on my working chair.
ReplyDeleteI find exercising a hard work to do. Specially when you are more than 150 lbs. But I have known a Physio who became my best friend, he helped me understand the importance of living a healthy lifestyle and love life to the fullest.
ReplyDelete