What Does Augmentation Feel Like?

Having restless legs syndrome (RLS) is no fun, folks. No fun at all. It’s like a mass of the world’s fastest beetles has started swarming down your legs. Just below the surface of your skin. Out of sight. Out of reach. Most definitely not out of mind. But RLS can drive you out of your mind.

The magic 'pixie dust' pramipexole relieved my RLS

So, imagine that after years of restlessness – fidgeting and wriggling and pacing and stretching your way through life – you finally get some reprieve. The doctor listens. The pharmaceutical company mixes some pixie dust with some unicorn feathers and makes a magical potion that soothes the suffering. Oh, the bliss of stillness.

My husband cannot understand how incredibly envious I am when he sits on a chair and doesn’t move. He just sits there – like it’s the easiest thing in the world. I don’t get it.

But then the pixie dust comes along — the magicians have called it pramipexole — and my restless legs stop moving. We turn on the telly at night and I just sit there with nothing more elaborate than a gentle toe-tapping. The intense urge to move just... gone. It’s sheer ecstasy. This is how other people live. This is how other people sleep. Their body rests. It’s a beautiful thing. I want to hold onto this feeling and never, ever let it go.

Then augmentation comes along and ruins the party.

One night, my medication didn't seem to work

I lived with the joy of stillness for around 5 years before things went awry. I had developed some impulse control issues as a side effect of the pramipexole. But a few too many pairs of shoes on the floor of my wardrobe seemed like a small price to pay for the happiness of living with peaceful legs.

One night I took my tablet but it didn’t seem to work. The afternoon’s escalation of movement urgency didn’t abate. In fact, it started to get worse. While my husband sat in his comfy chair watching crime drama on our big screen, I was lying on my back on the floor doing hamstring stretches.

The creeping and crawling just got worse

I turned over and did calf stretches. I found the Fitball and flopped backwards over it, trying to stretch myself out like a rack. Watching TV upside down, I stretched and stretched. I did laps to and from the kitchen. I did high knee raises. I climbed up and down the stairs. I missed how they solved the crime on the TV.

All the while, the creeping and crawling just got creepier and crawlier. My husband went to bed. I didn’t bother. The wriggly sensations turned painful. I developed nerve pain running from my lower back to my shin. It felt like a living nightmare.

Did I do something to make the RLS worse?

Had I had coffee? Cake? A gin and tonic? Did I do something to make the RLS worse? I couldn’t think of anything. But there I was. Squirming around on my lounge room floor in the middle of the night, wondering what on earth had happened.

It continued for weeks until I finally got an appointment with my doctor. She declared I had developed augmentation – i.e. instead of alleviating my RLS symptoms, pramipexole was now exacerbating them. There was no point taking it. I had to stop.

Briefly switching medications to fight augmentation

I wanted to cry. But there was good news for me. Another miracle drug was now being used for RLS: pregabalin. And much like pramipexole, I responded really well to it. The first night I took it, the symptoms eased. The insanity was held at bay for the time being.

Pregabalin never worked as effectively as pramipexole for me; there remained a shadow of movement urgency. But it was manageable. After about 6 months we reintroduced pramipexole at a very low dose and the ecstatic blissfulness of stillness returned to my body.

I no longer spend my evenings worrying about my legs

That was 15 years ago.

For 15 years I have known stillness. I still have to be careful – alcohol, caffeine, sugar, and some medications all cause periods of restlessness. I still find long periods of travel to be difficult. But I no longer spend my evenings racing up and down the stairs and trying to do the splits to stretch out my achy legs.

Now I watch TV and can pay attention to the storyline. I even find out 'who done it.' I hope I never, ever – for the rest of forever – experience augmentation again. It is most unfun.