Now I know physiotherapy can be a controversial subject in the world of M.E. I also know the damage that can be done from following a Graded Exercise Therapy regime which isn’t graded gently enough to be manageable. And that is why it was with some trepidation that I accepted a referral for physiotherapy after my diagnosis with joint hypermobility syndrome.
I have always recognised the importance of keeping my muscles working as much as I can safely do, without causing other symptoms to flare and my condition to worsen. But equally I have always struggled to find suitable exercises that are manageable for me.
Now that is a thing of the past. I was referred to a lovely physiotherapist who, although admitted she didn’t have a lot of knowledge about PoTS, M.E. or hypermobility, she knows a little about them all and is willing learn. Taking everything into account, our first appointment was mainly spent discussing my history, and coming up with a few things I could do differently each day.
So for example, I was already stretching, rotating my ankles, and completing knee extensions twice a day as per my Occupational Therapist’s recommendation at CFS Clinic (who didn’t really know what to advise me to do for the best). In addition to this we added in “armchair marching” whereby I sit and essentially march while seated; lifting each foot off the floor and putting it back down as if I was walking. And finally we also added “crab-walking” through the kitchen each time I went through there; so instead of walking normally through the kitchen, I walk sideways, thus using different muscles, and strengthening them.
Because all of this took a while, and she could tell I was beginning to flag, we didn’t do the usual physical exam as part of that first appointment, instead that would be done in my second appointment.
By this point I could already tell I’d struck gold with seeing this particular physiotherapist – she already understood I had my limits, and that this would need to be a gentle approach if I was to be able to manage it.
The second appointment didn’t disappoint on that score either. After a gentle physical exam, which proved my lower back and hips are one of my more weaker points, she came up with a plan which involved an additional six exercises for me to try and do each day, four of which are done lying flat, one sitting and one standing. The number of reps for each of them varies from 1 through to 5, depending on how I managed them when she talked me through them that day. And some are recommended to be done twice a day, while others only once.
She suggested I start by doing them all only once a day to see how it went, and then try doing the one’s recommended twice a day to see if it would be manageable. There is also one particular exercise with which she has noted the number of reps as “1 or 2 as able”, meaning if I struggle with doing just one, I only need to do one, as she could see my muscles were shaking as I completed it under her guidance.
And she also made the point that there is no point in pushing myself to do it if I’m not well enough, or if it proves too much, as it won’t make me any better and will do more harm than good. If I can’t manage it one day, it doesn’t matter, as long as I go back to it as soon as I am able. If I need to reduce the number of reps I do because it’s taking too much out of me, again it doesn’t matter. We’ll revise the plan at my next appointment.
As it happens I am actually managing all of the exercises quite well, exactly as she suggested them. The fact that they are all gentle, and I think also that many of them are done lying down or sitting, all helps make it possible. I haven’t really had to reduce the rest of my days activities (which isn’t a whole lot), and I’ve been managing to do them even on days where I’ve had other hospital appointments.
I know this is going to be a slow process. Rebuilding muscle strength will take time, but it should be beneficial too. It’s only been a month and already I am seeing small benefits; it’s getting that little bit easier to lift my foot up each step of the steep stairs in our little house, something which has been a struggle for many years now.
I’m hoping that this positive experience continues as the months go on, it certainly seems to be making a difference already and I can only hope that it will continue.