Now I have twitchy legs at night
There are hidden joys of multiple sclerosis. Its one long story of new challenges and survival. My latest problem, twitchy legs, only surfaced recently. It’s an uncontrollable twitch, starting in a muscle but culminating with my leg definitely twitching and repeats itself again and again. For some reason the fun only starts after the sun has set.
An uncontrollable twitch is bad enough
Imagine when the twitch results in your leg moving in ways that you cannot do yourself. This is definitely multiple sclerosis magic, The twitch affects muscles I cannot move myself. So utterly frustrating but at least I know they exist.
The twitches sometimes start when I am watching TV in the evening otherwise its within 20 minutes of getting into bed. Once I am asleep twitchy legs do not wake me up but apparently my legs will continue to twitch even when I’m asleep. It must be fascinating watching the unpredictable and inexplicable movements of a leg while the owner is in a deep sleep.
A mild burning sensation starts in my calf or thigh muscle. The pain or ache becomes more intense within a few minutes. Slowly an involuntary urge to move my leg will develop and then crescendo with a large involuntary twitch.
Sometimes the cycle can be almost as frequent as tremor, other times it might be every couple of minutes. Painless, but it is bloody annoying. Lying in bed and stretching is no help. I almost dread going to bed some evenings. Once the candle has been lit then the only ways to extinguish it are either falling asleep, rarely, or getting out of bed.
When it all gets too much
I get out of bed and slowly shuffle onto the landing clutching onto my zimmerframe. Carefully I walk backwards towards the stairs until my heels are over the edge of the top tread. I must never forget to hang onto the banisters or else who knows what will happen. Then I stand there for at least 10 minutes stretching those infernal calf muscles. The relief is indescribable. Now stretch the thigh muscles also for ten minutes, I do puny lunges using my walking frame.
Back into bed
In bed I quickly fall into a deep sleep but what a ritual. It’s turning into a nightly affair that fills me with dread. Something had to change. More in desperation than expectation I called my MS nurse.
She asked me questions
She really wanted to know what pills I take and when, in particular Gabapentin, Tizanadine and Clomazepam. I have always taken all my pills once I’m in bed, just before I turn my light out. She suggested I take Gabapentin and Tizanadine about two hours before I turn my light out because the problem sounds like spasms and stiffness.
It worked 🙂
This small alteration to my routine has worked beautifully and there are other advantages as well. I wake up in the morning feeling refreshed, full of energy and no cog fog. Just a small tweak to my daily routine. I still twitch but a deep sleep awaits me every evening when I turn the light out. I mustn’t crow ‘cos you never know what’s round the corner. Oh, the hidden joys of multiple sclerosis.
Every morning I have to stretch my stiff muscles
Sometimes I cannot get out of first gear
Fab result from your MS nurse!
The postcode lottery which prevents some people from having access to an MS nurse is ridiculous.
Now we have finished our Thursday clapping I do wish the polticians would give them all the pay rise they deserve!
Well done the MS nurse.
I agree on both post code lottery and pay rise issues. I am very concerned on the impact the current situation is having on charities that do not receive any government backing. As well as the obvious ones like MS Society and MS Trust it is having a huge impact on smaller organisations such as the MS Therapy centres. Watch this space for mycontribution via a sponsored event in September