The importance of stretching

I was diagnosed with CIDP in August 2023. Initially I responded amazingly well to IVIG but it didn’t last, and successive treatments had less and less effect, eventually none. I was prescribed Rituxin, but that takes “maybe 2-3 months to start working after the last dose”. So from December I was steadily getting worse, being essentially unable to move at all except for my head through January – March 2024.

I spent virtually all day sitting up in an airbed using voice command on my phone, with my knees elevated to stop me sliding down. My bum fit in the crease and the airbed prevented pressure sores. So basically “Apollo astronaut” position for my legs. At night I had to sleep partly on my side on a foam wedge because otherwise I got phlegm building up in my airway. So, bent legs again (my normal position when healthy).

I’m now recovering and trying to build muscle back – I lost about 20kg. The other problem is that my muscles and tendons shrank and need stretching out for me to stand properly upright, otherwise I’ll walk like a chimpanzee. I’ve now moved to a rehab ward where there are physiotherapists working with me every weekday, and besides, now that I can move again, I can move myself. Before that, I was in a medical ward where, starting I think in March, a physiotherapist would come every day or two for about 10 minutes of mild stretching. Later, they started doing some limb placement – propping my legs and arms with pillows in a couple of different positions that were at least different from my sitting position.

That really  wasn’t enough. It would have been better to have done more stretching and limb placement earlier, for longer, and for that matter better explained to me what the reasons were. Partly it was a matter of staffing and funding – the hospital is chronically understaffed and there aren’t always people available to do much more than the basic feeding/cleaning/medicating – I was grateful just to get set up comfortably with my phone and a few meals, waiting to see if the Rituxin was really going to do anything.