Today’s post is in collaboration with my good friend Cara, a fellow M.E sufferer. I’m going to be talking through my experience with physio, and Cara will be discussing her experience with Graded Exercise Therapy. Together hopefully we can shed some light on the topic based off of our very different experiences. After you’ve finished reading this, please head over to Cara’s blog to hear her point of view. I’ll make sure to link it at the bottom of this page.
I started going to physio for my M.E probably about 3 years ago, around a year after getting M.E in the first place (I think, if I’m being honest I don’t accurately remember when I started, but it’s been a while anyway). At the time my leg pain at night was absolutely unbearable. I would writhe about my bed in pure agony, for hours, and I genuinely thought surely this level of pain would drive me insane. It was the sort of agony that I’m not sure how the body survives, and that’s me being completely honest. One of my Mum’s bookkeeping clients is a physiotherapy practice so we got in touch with them and I started going on a weekly basis. They changed my life.
I cannot express how amazing it was to go to a medical facility and be met with understanding and belief in a completely non-judgemental way. I didn’t have to “prove” my M.E to them, it was just a given from the start that this was a real issue and they would try everything to help me. And help me they did. I started with acupuncture and massage on my legs. I did this on a weekly basis, and then after some improvement moved it to every two weeks, three weeks, up to once a month. If I was going through a rough patch (say for example college work was getting busy) I would go back down to every two weeks or weekly. We went through this cycle for years, it was up and down but I knew I was reacting correctly to what my body was telling me. If it was struggling I helped it, if it was managing okay I could take a break from it for a few weeks. I made sure to get an appointment before any holidays or big events (for example Christmas) in hopes of minimising my payback afterwards. It worked.
After some time the physio I was seeing left the practice, and since then I’ve bounced around a couple of them – all have been amazing. I stopped acupuncture after my first physio left and have only had massage since. I don’t think I notice a difference without the acupuncture so moving forward I’m in no rush to try it again. However I would recommend it if you’re curious about it as it didn’t do me any harm and I’m glad I gave it a go. I’ve also tried ultrasound on my joints, again I didn’t notice a big difference. When I say massage I imagine you’re thinking of something relaxing – no no. This massage is sore, but it works. It’s not exactly enjoyable getting it done, but it’s bearable and I always walk out of the building so much lighter than I walked in. I walk out and my legs feel like legs, if that makes sense. They don’t feel like solid painful lumps of lead anymore. And it’s the most wonderful feeling.
I haven’t been to physio since Christmas, because I haven’t felt like I needed it. That is a huge deal for me. It’s a sign of definite improvement, something tangible that I can measure against and see how far I’ve come. I would 100% go back as soon as I felt I needed it, probably when I start back at college and things get hectic again. I think the thing I loved the most about physio (besides the pain relief obviously) is that they were able to give me an answer to my questions. They were able to tell me what my leg pain actually was (a problem with my fascia layer we think). I went to the doctors countless times about my leg pain, spoke to several specialists, and all I ever got in response was “oh, that’s odd”. Not exactly helpful. Knowing there was a physical reason my legs were this painful was validating and assured me I was in actual fact not losing my marbles.
I honestly don’t know what I would have done if I hadn’t started physio. I definitely wouldn’t have been able to go to college, or stay at college. I wouldn’t have been able to travel, and I probably wouldn’t be able to drive. They have been absolute life savers. If you’re in the Stirling area of Scotland I cannot recommend PhysioFocus enough, they are some of the kindest and most dedicated people I’ve met in the medical profession. I realise I’m in a very lucky position here and in no way take it for granted. If you’re thinking about trying physio for your M.E I would highly recommend you do so. It’s worth a try, and I really do hope you find someone as understanding as I have.
Since starting physio I can definitely physically do more (I think my last post is testament to that). However I think the difference between this and GET is I haven’t actively tried to increase anything. And I think that’s why it has worked. Like many others I don’t believe in GET and instead believe it to be dangerous. I would never try it. What I’ve done instead is listen to my body and give it as must rest as needed. With that I’ve been able to build up slowly, but there’s been no pushing it and no schedule. I have given my muscles and joints the TLC they needed, and that has been rewarding. I don’t have a schedule of basic daily tasks, because I know that each day is different. Some days I can stand while brushing my teeth, some days I can’t. Some days I can have a shower, some days I can’t. Reacting to my bodies needs in a responsive way has been what has helped me, and I would highly suggest trying the same. I refuse to push my body to its limits, however seemingly small those limits are. If all I can manage is resting then that is what I will do. Have you tried physio or GET? How did you find it?
To read Cara’s experience, click here.