Are RLS Movements Voluntary or Involuntary?

I have had restless legs syndrome (RLS) my entire life. That’s coming up on 56 years now — quite a long time to be wriggling and jiggling.

For much of my life, I have had people tell me to stop moving, and you know what? It’s jolly hard.

I also have periodic limb movement disorder (PLMD), which generally only affects me while I sleep. The movements with PLMD are completely involuntary. I have woken myself up with leg jerking. I have most definitely woken my husband up – so much so he occasionally suggests I might be more comfortable in the spare bed. And very occasionally, I will have PLMD movements during the day – usually when I’m at rest and my arm or leg just flies out in a big twitch. I get quite a surprise.

But are RLS movements voluntary? I find it is a difficult thing to answer.

What my RLS feels like

For me, the sensations of RLS are like a swarm of beetles cascading down my leg – from my lower back down to my ankles. There is a deep ache associated with the moving sensations. When I move my legs, the ache is eased. It doesn’t go away, but it is less distressing.

During the day, when I’m seated – like now, while I’m typing – I just jiggle like a well-dangled teabag. There’s nobody here to bother. If I try and sit still, the sensations build and build until they’re at bursting point and the desire to move my legs and release the tension is overwhelming. It’s like a spring under tension – it just can’t stay there for too long.

I can start and stop RLS movements

But I can stop the movements. It’s uncomfortable and I can’t stop them indefinitely, but I can stop. Therefore, I consider the movements to be voluntary. I make the decision as to when I can stop and start. If nobody is around to be disturbed, I can jiggle continuously (like now). If there are people nearby who are impacted by my movements, I can stop for short periods of time then engage in much more subtle movements, like pelvic floor exercises or slow stretches.

Involuntary movements and diseases

There are diseases – some of them quite significant – that are characterised by involuntary movements or impairment of voluntary movements. And there are times when I’ve been asked if I have those diseases.

Huntington’s disease, Parkinson’s disease, attention-deficit/hyperactivity disorder, Sydenham’s Chorea, rheumatic rever. I’m sure there are many more.^1-5

If you’re ever concerned about what type of movements you are experiencing, the Mayo Clinic has excellent descriptions of the signs and symptoms of most diseases, including restless legs syndrome.⁶

Tremor is not the same as restlessness

It is also worth noting that a tremor is different from restlessness. Many of the diseases listed above may cause a tremor. Many medications can have side effects that include tremors. There is also a condition called an essential tremor that has no other symptoms aside from a tremor.⁷

I have experienced tremors related to medication side effects (lithium). And there is a strong genetic history of essential tremor in my family. I seem to be in the early stages of developing a mild shake.

Tremor is involuntary

But a tremor is not the same as RLS. It feels completely different. It is not voluntary and it cannot be stopped. My RLS movements are intensely uncomfortable, but I can exert control and stop them when necessary. I feel that being able to distinguish between voluntary and involuntary movements is important and should be discussed with your doctor as there are many associated conditions.

RLS and tremor are a part of my life

While there are times when RLS has driven me to the brink of insanity, I am conscious of the fact that it is not a fatal disease. It worsens over time, but it won’t kill me. Same for the essential tremor.

I find that most of the time, I barely notice my restlessness and tremor. They are just a part of my life. It is when I have to try and exert a modicum of control over the moments that it becomes clear exactly what I can and cannot control. I am grateful that with RLS, there is at least a modicum of control.