No, I haven’t started playing Bingo!
But I do have a new problem to report… it’s my legs… well, it’s my arms and legs…
Since around April this year, all my limb muscles have become very tight and stiff. You know when you’ve not done any exercise for ages and then you walk, run or cycle several miles (not that I ever run), or when you ride a horse after a long time… the next day, or even for a few days afterwards, the muscles you’re not used to using are stiff and you really feel like you’ve worked them.
Well, it’s like that, but I’ve not done any strenuous or new types of exercise AND it’s been going on for more than seven months with no let-up. It doesn’t get better, with exercise or rest… but at least it seems not to get worse either.
It always feels worst first thing in the morning, or if I’ve been sitting for some time, so as I get out of bed or get out of the car, I am so stiff that I move like someone with severe arthritis. And forget sitting cross-legged, kneeling and sitting back on my heels, crouching, or even my usual curled-up-on-the-couch position. It’s just too damned uncomfortable.
My Tai Chi teacher has noticed that I can’t get as low in some positions as I could previously and I have a creakier, less nimble gait when I go up stairs.
With my arms, I find it hard to reach the middle of my back, whether in the shower, to fasten my bra or take off a t-shirt. Even raising my arms straight up feels like a strain. Again, in Tai Chi, there are some moves that involve an arm stretch, which I find difficult or painful. And putting on socks and shoes takes time and energy, if I can reach at all.
I’m not in pain, just limited in what I can easily, comfortably and gracefully do. Everything is tight and inflexible.
After a few weeks of this, I realised it wasn’t just over-exercised muscles and it wasn’t going away. I began to think it might be a presentation of Graft versus Host Disease [GvHD]. Having decided to mention it to the consultant at my next clinic visit, I felt anxious lest they said it was a progressive type of GvHD that might not respond to treatment, or that it wasn’t GvHD at all… and then what…?
I saw Dr Chris that day – a new-to-me consultant. This was the same day as the comic clinic episode I wrote about last week.
Anyway, I brought up the strange tightness in my arm and leg muscles. After clarifying that I am not taking statins, which apparently can have this effect, he suggested doing a blood test for the muscle enzyme CK or CPK, which stands for Creatine kinase or Creatine Phosphokinase.
We didn’t talk about what it might mean or what might need to happen if the test showed an abnormal result. I had a rather special holiday coming up, so the last thing I wanted was to be held back for treatment if the test showed positive.
Fortunately the CK test came back negative. In other words the enzyme was not in evidence, which is good as a positive result could mean myopathy – muscle disease/weakness. All was normal… at least in terms of my blood. This still left a big question mark… What was causing the stiffness? More to follow, but (only because it’s taking me so long to write it and I need to get up to date), here’s a quick spoiler alert…
Chronic GVHD can also affect the skin in a variety of ways, causing… sometimes a tightening and thickening of the skin, known as sclerosis. Sclerosis varies in its severity and can remain confined to the skin or it can spread across joints and tendons. This tightening of the joints and tendons can limit your range of motion and can make it difficult to bend and straighten your arms, legs, and other joints.
– quote from the National Bone Marrow Transplant Link (a US support website)