The main sign of tardive dyskinesia (TD) is making movements which:

• you don’t normally make, and
• are totally out of your control.

I had neck stiffness for two weeks and then developed a twitch in my right arm. This quickly developed into both arms cramping regularly. My arm would cramp and spasm and my thumb would end up touching my shoulder.

TD can cause:

• Jerky movements – irregular movements which aren’t rhythmic or repetitive. For example:
  • lip smacking
  • moving your mouth or jaw
  • tapping or moving your hands or feet
  • movement in your hips
  • movement in your upper body
  • blinking your eyes a lot.

• Slow movements – movements which are slow and flowing, including writhing or squirming. For example:
  • wiggling or twisting your fingers, arms, legs, neck or tongue.

• Muscle spasms (also called tardive dystonia) – movements where your muscles suddenly tighten, which might last a short time or for longer periods. For example:
  • making grunting noises
  • having difficulty breathing
  • changes to your posture.

The Dystonia Society website has more information on tardive dystonia.

My leg kept flexing at the knee in quite a big gesture and I had no control of it whatsoever. I also developed a slight tremor in my hands and arms which I still have to this day.

If you have a diagnosis of schizophrenia, you may have experienced unusual movements before taking any medication, including moving your legs and arms a lot or being restless. This might make it hard to recognise or pick out the symptoms of TD.

It made me feel stupid and very depressed. It was funny sometimes, however it soon became painful. I didn’t want to go outside as I felt embarrassed.

Noticing signs of TD early can be really important for reducing the chance of it continuing. If you are taking antipsychotic drugs and are experiencing any of these signs, it’s important to speak to a doctor as soon as possible – even if the symptoms seem mild, or you’re not sure what they are.

This information was published in April 2018 – to be revised in 2021. References are available on request. If you would like to reproduce any of this information see our page on permissions and licensing.