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Muscle cramps and dystonia

Pain from muscle cramps and dystonia are common issues for people with Parkinson's. Find out what these are, what causes them, and how they're treated.

What are muscle cramps and dystonia?

Muscle cramps and dystonia are conditions where one of your muscles or a group of muscles tighten or shorten involuntarily, causing pain.

Muscle cramps and dystonia can be confusing as they can feel very similar. You may not always be able to tell the difference between them, but they are caused by separate problems and are also treated differently.

Dystonia is often categorised in 2 ways:

  1. Dystonia can be a condition on its own called ‘primary’ dystonia
  2. Dystonia can be connected to other conditions, including Parkinson’s (‘secondary’ or ‘symptomatic’ dystonia)

What causes muscle cramps and dystonia?

Muscle cramps

It is not always possible to find out the cause of muscle cramps, and people who are otherwise healthy may experience them without there being an underlying cause.

They may be the result of:

  • not moving around enough
  • doing too much
  • poor circulation
  • dehydration

Muscle cramps are more common in people with Parkinson’s, although we are unsure why.

Dystonia

Dystonia is caused by the muscles not relaxing after they tighten or shorten. For people with Parkinson’s, this is often related to the effect of levodopa.

Dystonia is more common in people who have been diagnosed with Parkinson’s at a younger age (under 40), but it can affect anyone with the condition.

‘Off’ dystonia

Dystonia happens most often when levodopa treatment is ‘wearing off’. This is when the drug becomes less effective before your next dose is due.

If you take your last dose of medication last thing at night, you may experience 'off' dystonia when you first wake up in the morning.

This type of ‘morning off’ dystonia is most likely to affect your legs. You might experience painful spasms and may not be able to get out of bed until your first dose of medication begins to take effect.

‘On’ dystonia

Dystonia can also happen at ‘peak-dose’, when your levodopa is at its most effective. It is caused by having too much dopamine in your brain, which can overstimulate your muscles.

Other dystonia

More rarely, dystonia in Parkinson’s is not caused by the effect of levodopa and is actually a feature of the condition itself. This type of dystonia can happen at any time of the day, but usually lasts for a shorter time than dystonia connected to levodopa.

What parts of my body can be affected?

Muscle cramps

Muscle cramps can affect any muscle in your body, although the calf and neck muscles are some of the most commonly affected areas.

Dystonia

Dystonia is more likely to affect the side of your body that is most affected by Parkinson’s. It can affect a single muscle or a group of muscles.

Legs and feet

For people with Parkinson’s dystonia often affects the feet.

Spasms in your calf muscles may make your toes curl into a claw-like position. Your foot may also turn in at your ankle and your big toe may extend.

This can be very uncomfortable, especially if you are trying to put your feet into tight-fitting shoes.

Hands

Hand spasms may happen when you’re making small movements such as writing. This is known as ‘writer’s cramp’ and can be associated with arm tremor.

Head and neck

If you experience dystonia, you may find that your head stays turned to one side, bent forward, or more rarely, backward.

Your healthcare professional may refer to it as ‘cervical dystonia’ or ‘spasmodic torticollis’.

Eyelids

If dystonia affects your eyelids, the eyelid muscles may contract when you close your eyes, either every now and again or for a longer period of time. It usually starts in one eye but can often spread to affect both. 

Symptoms include excessive blinking, irritation, a burning feeling in the eyes and sensitivity to light. Stress, looking up or down, reading, driving or bright lights can make these symptoms worse.

Your healthcare professional may refer to this as ‘blepharospasm’.

Vocal cords

Dystonia in the vocal cords can affect your speech and the quality of your voice.

Your healthcare professional may refer to it as ‘laryngeal dystonia’ or ‘spasmodic dysphonia’.

Side of the face or jaw

This usually affects one side of the face at a time. It may affect the muscles around the eye at first, before spreading gradually to other muscles on the same side of the face, particularly around the jaw and mouth.

Your healthcare professional may refer to it as ‘hemimasticatory’ or ‘hemifacial’ spasm.

How are muscle cramps treated?

There is no one treatment for pain caused by muscle cramps, but you may find it helpful to try the following:

  • stretching and massaging the affected area
  • being more active if you can and trying to move around more during the day
  • taking over-the-counter painkillers, such as paracetamol

You may also find physiotherapy beneficial although it’s worth remembering that it may not work for everyone.

A physiotherapist will assess your muscles and the movements that are affected. They can then give you stretching exercises that may help to ease stiffness and soreness. These types of exercises may also help to improve your posture. Doing this will prevent the affected muscles from becoming weaker or shorter.

Your GP should be able to refer you to a physiotherapist. However, some people may want to pay to see a private physiotherapist.

If you choose to do this, we recommend that you contact the Chartered Society of Physiotherapists for details of trained and registered physiotherapists.

If you’re still having difficulties, speak to your GP or specialist about medication that can help to ease cramping, such as quinine or muscle relaxants.

How is dystonia treated?

Medical treatment

The first step is to try to work out what is causing your dystonia. If the dystonia is connected to levodopa, your medication regimen may need adapting.

You may find it helpful if you or your carer keep a diary that shows how your dystonia relates to your medication. This will help to explain the problem to your specialist or Parkinson’s nurse.

The timing of medication for dystonia

If you experience early-morning ‘off’ dystonia, it may help to take a controlled-release dose of your medication last thing at night or to take your first dose of the day crushed, to speed up its effect.

Make sure you check with your specialist or Parkinson’s nurse that your medication can be taken in this way – not all drugs are safe to be taken crushed or broken.

Another strategy is to take a long-acting medication last thing at night.

There are also dissolvable medications available. These are quicker to take effect than standard tablets (although often shorter acting). Your specialist or Parkinson’s nurse may suggest a combination of a standard tablet and a dissolvable one for your first dose of the day.

Some people also find it helpful to have more regular doses or to add other medications to their drug regimens to make their levodopa work for longer. Speak to your specialist or Parkinson’s nurse for more information.

If you experience peak-dose dystonia, you may wish to speak to your specialist about replacing fast-acting medications with slower ones, or a medication that releases a continuous lower level of dopamine stimulation.

If you have any questions about dystonia or its treatment, speak to your specialist or Parkinson’s nurse.

Other things that may help

If your dystonia does not respond to changes to your Parkinson’s medication, there are other options you can discuss with your GP, specialist or Parkinson’s nurse, including:

  • drugs that relax your muscles such as diazepam (Valium) and clonazepam (Rivotril)
  • baclofen (Lioresal). Baclofen can also be used to treat cramp
  • anticholinergics such as benztropine (Cogentin) and biperiden (Akineton)
  • yawning to ease dystonia in your vocal cords
  • talking, lying down, singing, laughing, chewing or putting pressure on the eyebrows to relieve dystonia in your eye lids

Remember that not all of these treatments will be appropriate for everyone. So make sure you talk to your GP, specialist or Parkinson’s nurse about what’s best for you.

Botulinum toxin

Botulinum toxin (Botox, Dysport or NeuroBloc) is a powerful nerve toxin that is sometimes used to treat dystonia. It can be injected in small doses into the affected muscle.

This treatment needs to be repeated every 2 to 3 months.

Sensory tricks

Many people find that ‘sensory tricks’ give temporary relief from spasms, although there is no scientific evidence to explain why.

Tricks can involve touching the affected body part, or a nearby body part, before or while you make the movement that usually triggers a spasm. This seems to prevent or shorten the spasm by distracting the brain.

You can speak to your GP, specialist, Parkinson’s nurse or a physiotherapist about sensory tricks.

The Dystonia Society also has a list of tricks for reducing dystonia that people have shared with them.

Relaxation

Some people may also find that being relaxed helps with their dystonia.

What makes someone relax differs from one person to the next, but you may find having a warm bath or massage helpful, or trying complementary therapies such as yoga.

Surgery

Surgery for dystonia is not common, but may be considered if you don’t respond to drug treatment.

Surgical procedures that are already used for Parkinson’s, such as deep brain stimulation, have been shown to help dystonia. Speak to your GP, specialist or Parkinson’s nurse to see if this option is open to you.

Useful contacts for dystonia

The Dystonia Society

This organisation offers support to all people with dystonia. It has a range of information on the different forms of the condition and the treatments available. It also has a number of local branches throughout the UK.

The Chartered Society of Physiotherapy

This organisation can give you details of qualified physiotherapists in your area.

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