Let’s get physio.

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.

Post script:

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.

2 thoughts on “Let’s get physio.

  1. I understand; and because I understand, I’m sorry you are experiencing this too.

    My spasticity has triggerpoints also. For instance, if the top of my knee Is touched, my foot jerks forward. Put all of my triggerpoints together and something like putting on pressure hose makes me look and feel like I am convulsing

    It’s a stretch to try to describe in words how our ms bodies behave. It’s a revealing and mostly helpful exercise for the purpose of awareness, but it also brings to light the craziness of it all and with understanding comes a certain sadness and the required grieving that follows…at least for me. It’s always therapeutic to be listened to and describing it educates others.

    The thing about nerve pain, I am told by my neurologist, is that over-the-counter painkillers do nothing to squelch it. I take Neurontin for it, but in low doses because The more I take, the more I sleep. I’m happy that what I take takes the edge off.

    Stay strong.

  2. Hi Dave,

    Wow, you’re really going through the mill atm, aren’t you?

    A few things I wondered are:

    1. Re painful big toe and leg on fire: suggest ask your GP to do a blood test to rule out gout.

    2. The fasciculations must be a real drag, but on the plus side (and this is a big plus), they’ve been going on for ten years, and that they’re ‘only’ in that calf. Have you had an EMG test recently since you said you’re clumsier and more fatigued?

    3. The ‘pain’ of deeply unpleasant sensations in your legs I can relate to, and remember your previous generally unhelpful pregabalin/gabapentin/amitryptiline experiences.

    I have had lamotrogine which has worked to some extent but in combination with the above which you can’t take.Have you tried this?

    I did have considerable relief with nabilone (tired and groggy) but goodbye weird, unexplainable, horrible feelings and hello deep sleep. Good for weekends and when you really have had enough. Referred to Pain Management Team by my neurologist for this: very helpful.

    Chronic neuropathic pain is debilitating and grinds you down, and unhelpfully doesn’t let other people gauge the extent of your suffering.We should invent some kind of measuring device, like a thermometer. Then we’d be given the sympathy we feel entitled to. Well, maybe…

    Hope some of this is helpful.Good luck!

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