Here’s a video showing a typical minute in the life of my calf muscles.
Yesterday I added to my Panini sticker book of health professionals by seeing a neurophysiotherapist for the first time. It was mainly about leg pain and my twitchy calves, but also about my general clumsiness, fatigue and my general state of affairs.
My fasciculating legs are a remnant, along with my doublevision, of my last BIG relapse in 2008. While other symptoms have fallen by the wayside or make occasional quick unannounced visits like an unwelcome relative (I’m talking about you, vertigo), my painful legs have been a problem for the last decade. I’m not saying the twitches are painful in themselves, but there’s a correlation: the more painful my legs are, the twitchier they’ll be.
I reckon seeing a physio is one of the best healthcare experiences you can have, as it’s pretty hands-on. It’s just nice to hold someone’s hand, even if they are jerking your arm around. I had my balance, my range of movement, my reflexes, and what sensations I was (or wasn’t) feeling assessed. Most importantly, I got to talk everything out, relaying everything I’ve been through from day one, to someone who genuinely listened.
It also helped me get my head round things. I’ve been using the word ‘pain’ as a box ticking exercise; it’s a convenient way to describe an unpleasant sensation, but it’s not pain in a conventional sense. If it was the pain of a headache, burn, tooth or even a bad back, I could rationalise it, no matter how intolerable – my pain threshold is pretty high (ask my dentist).
This is the pain of extreme discomfort; the pain of an itch you can’t scratch or the ache of an amputee’s phantom limb. At its worst, it’s torture.
I was asked to describe the way my legs feel, and after thinking for a while, I said they feel charged; they have an electricity about them. I’m pretty sure if I listened carefully enough I’d hear the crackle of static or the hum of an overhead power-line. If they wake me up in the night, the charge builds up over a period of about 20 or 30 seconds before discharging in a spasm. Only one leg at a time will be a problem. If I gently touch the sole of my foot or my calf muscle when they’re at their most sensitive, they’ll recoil in a hyper-reflexive instant.
Again, I thank my lucky stars for MS nurses because it’s only this year when I mentioned my legs in one of my nurse appointments that anyone has taken them seriously. Even my neurologist has dismissed them in the past as a twitch that everyone gets (really?) just like a twitching eyelid.
At least now I can take baclofen a couple of hours before I go to sleep and combine these with stretches and exercises to ease my way into the land of nod. I also have a series of follow up appointments with the physio to look forward to.
After writing the above, a mildly arthritic big toe joint has decided to flare up. This is causing me no end of agony from the attached leg alone. When I saw the physio, it was after a fairly comfortable morning of working from home, so typically, I couldn’t demonstrate the worst case scenario. Today’s a different matter, it’s like my whole leg from the knee down is on fire. My reflexes are kicking in every time my foot touches something, making it pretty hard to walk. I’ve taken my baclofen early, and I’m taking ordinary painkillers for the toe, so fingers crossed I’ll get some sleep, but I’m not holding out too much hope.