Pain

This information explains pain as a symptom of Parkinson's, the types of pain and how to treat them.

Pain is a common symptom in Parkinson’s. Between 4 and 8 in 10 people with Parkinson’s experience pain as a symptom at some time.

Pain in Parkinson’s may be made worse by a specific Parkinson’s symptom, such as rigidity (muscle stiffness). But recent studies suggest that Parkinson’s may also cause changes to the pain areas in the brain. This could cause you to feel more pain.

For example, someone with Parkinson’s who also has mild arthritis may experience a higher level of pain compared with someone who does not have Parkinson’s.

It's important to find out the cause of your pain, so speak to your GP, specialist, physiotherapist or Parkinson’s nurse. Your healthcare professional will want to find out what’s causing the pain. This is to see if there are other reasons for the pain you are having that aren’t to do with your Parkinson’s. You might have more than one type of pain at the same time.

The main types of pain in Parkinson’s

Musculoskeletal (muscle) pain

This is a common type of pain in people with Parkinson’s.

It’s often related to Parkinson’s rigidity (stiff or inflexible muscles) and reduced movements in your joints. It usually feels like an ache in the back and neck. You can also feel it in your ankles, hips and shoulders. But any part of the body can be affected.

Short-term painkillers such as non-steroidal anti-inflammatory drugs (NSAIDs) and paracetamol can help, as well as regular exercise, improving your sleep and physiotherapy.

For some people with Parkinson’s, shoulder pain or a frozen shoulder is the first symptom they notice. If you have this kind of pain, your neurologist can help find the best treatment.

Read our information on physiotherapy and Parkinson’s or read our information sleep and night-time problems in Parkinson’s.

Dystonic pain

This type of pain is caused by dystonia, which is uncontrolled muscle movements (spasms). These muscle movements can be painful. For some people the pain can be severe. These spasms happen when muscles contract (become tighter and shorter), making them stiff.

Contractions can happen in parts of your body such as your legs, feet, hands, ankles or wrists, and can cause twisting movements or spasms in that area.

The spasms can feel like a severe cramp. They can make the affected part of your body take on an unusual posture. For example, the toes may curl up.

Sometimes, dystonia is related to the timing of Parkinson’s medication. Taking medication in different ways and at different times may help your dystonia.

Speak to your specialist or Parkinson’s nurse before making any changes to your medication, including taking painkillers.

Your healthcare team can also help you find the best ways for you to manage any pain caused by dystonia.

Read our information on muscle cramps and dystonia.

Neuropathic pain

Neuropathic pain is caused by damage to the parts of the nervous system that allow us to feel things like touch, temperature and pain. This system is called your somatosensory system.

Neuropathic pain is often called nerve pain.

Central pain

This type of neuropathic pain may be one of the complications of Parkinson’s. It is not properly understood and can be difficult to treat. It can also be caused by other conditions affecting the brain and spinal cord.

Central pain is also known as primary pain.

It can be very painful, and some people describe it as a stabbing, shooting, burning, tingling, prickling or scalding feeling. It can be a constant pain or on and off. It can be made worse by touch, movement, emotions and changes in temperature.

Central pain can sometimes be managed by changing your Parkinson’s medication, talking therapies, or by a prescription painkiller.

To discuss your treatment options, speak to your GP, specialist or Parkinson’s nurse. They may suggest physiotherapy, ways to improve your sleep or occupational therapy. They may also arrange for tests to determine if your central pain is caused by Parkinson’s or another condition.

Radicular pain

Radicular or shooting pain is a sharp, often shock-like pain that travels (or ‘shoots’) down the arm or leg, and sometimes the fingers and toes too. Radicular means relating to the roots of our nerves.

Shooting pain is usually caused by the result of a trapped nerve within the spinal cord around the neck or lower back. A trapped nerve happens when there is too much pressure on the nerve by the tissues that surround it. Dystonia and changes to posture linked to Parkinson’s can cause pressure on a nerve.

Shooting pain that won’t go away is rare, but if you experience this, speak to your specialist.

Speak to your GP or physiotherapist if you’re having pain that feels like this. They will help you work out what type of pain you might have and what could help.

In many cases, regular, gentle exercise can be enough to treat shooting pain. Your specialist or Parkinson’s nurse may also adjust your Parkinson’s medication, or suggest physiotherapy or occupational therapy.

Other treatments for nerve pain

Nerve pain can also be a combination of radicular pain and central pain.

Common over-the-counter painkillers like paracetamol or ibuprofen might not work well for nerve pain as they do for other types of pain. Your doctor can give you more advice about this.

Other treatments for nerve pain might include:

Lidocaine creams or patches. Lidocaine, a local anaesthetic, temporarily stops your nerves sending pain signals to your brain, making your skin feel numb.
A TENS machine.These small, portable devices stick to your skin and send a weak electrical signal through your nerves to help ease pain.
Steroid therapy.
Psychological therapies. These include talking therapies like cognitive behavioural therapy (CBT), which aims to change how you think and act to help you manage your symptoms.

Complementary therapies like acupuncture might help too. Read our information on complementary therapies.

Dyskinetic pain

Dyskinetic pain can be described as a deep, aching sensation. It can happen because of involuntary movements (dyskinesia) which can be a symptom of Parkinson’s.

If you have Parkinson’s, dyskinesia can happen if you have been taking levodopa medication for some time.

Dyskinetic pain that starts during severe involuntary movements may be caused by the twisting action of the movements.

Speak to your GP, specialist or Parkinson’s nurse if you’re having dyskinetic pain. Your Parkinson’s medication may need to be adjusted.

Read our information on ‘wearing off’ and involuntary movements.

Other types of pain

Other types of pain associated with Parkinson’s

Muscle cramps

Muscle cramps happen when your muscles shorten more than they are used to, or when they suddenly tighten, causing sharp pain.

Muscle cramps can happen for a number of reasons when you have Parkinson’s and it’s not always possible to know the cause. They can be painful and can happen at any time.

An activity using a muscle movement you aren’t used to could trigger a cramp.

Muscle cramps can happen at night and could be caused by sleeping in a particular position. A cramp usually lasts a few seconds but it can last up to 10 minutes. Your muscles can feel tender for up to 24 hours afterwards. Trying to move around and being more active during the day may help. You can also try to soothe the cramps by stretching and massaging the muscles.

Speak to your GP, specialist or Parkinson’s nurse for advice on easing muscle cramps. They may refer you to a physiotherapist.

Read our information on muscle cramps and dystonia.

Restless legs syndrome

Restless legs syndrome makes you feel an overwhelming urge to move your legs, especially in the evening, at night or when resting.

Restless legs syndrome can give you a sensation in your legs that is:

tingly
burning or hot
itchy
like a painful cramp.

You might also notice an aching or a throbbing feeling in your legs.

Restless legs can also cause unpleasant feelings in your arms, chest and face.

People have described it as a ‘creepy-crawly’ feeling, or that it feels like they have ‘fizzy water’ in their veins. This can be uncomfortable when your legs touch your bedding or other surfaces.

As symptoms generally get worse in the evening or at night, restless legs can have a major effect on your sleep. Night-time pain related to restless legs can be treated with Parkinson’s drugs, such as dopamine agonists. Your healthcare professional might also recommend other medicines.

Things you can try yourself include:

stretches and exercise
massaging your legs
finding ways to relax
taking a hot (but not scalding) bath in the evening.
avoiding alcohol, caffeine and smoking.

Read our information on restless legs syndrome.

Pain in the mouth and jaw

Some people with Parkinson’s experience a burning, scalding or tingling sensation or pain in their mouth or jaw. This is sometimes called ‘burning mouth syndrome’. This is a rare symptom of Parkinson’s and can happen at any stage of the condition.

Burning mouth syndrome can cause a dry mouth sensation and feeling of thirst. Dryness of the mouth can also be caused by some Parkinson’s medications (particularly anticholinergics).

If you have a burning or painful feeling in your mouth, speak to your dentist, specialist or Parkinson’s nurse. You may be referred to a specialist dentist or maxillofacial doctor (a doctor who specialises in conditions affecting the mouth, face and neck) for further tests or treatment. It’s important that you don’t stop taking your medication before getting advice from your healthcare team.

If you wear dentures, burning mouth syndrome can make them feel uncomfortable or painful to wear.

Ask your doctor or dentist about things that you can do yourself to ease pain in the mouth. These include:

drinking water regularly
avoiding hot or spicy food and acidic drinks
removing dentures at night to give your mouth a chance to recover.

Read our information on mouth and dental issues in Parkinson’s.

Foot pain

People who are less mobile may have pain in their heels caused by:

changes in posture which put their body weight onto their heels
friction from trying to change position in bed, or movements caused by restless legs syndrome.

Read our information on foot care and Parkinson’s.

Akinetic pain and crisis

If your movement is restricted, especially during an ‘off’ period when medication is no longer working, you may have akinetic pain. Akinetic means not being able to move.

Acute akinesia is a rare and dangerous complication of Parkinson’s. It is also called akinetic crisis or neuroleptic malignant crisis.

Akinetic crisis involves a sudden worsening of Parkinson’s symptoms, which can include severe rigidity, a complete loss of movement, fever and difficulty swallowing.

People with Parkinson’s who have akinetic crisis pain say that they feel pain in their muscles and joints, and experience headaches. Some people also experience whole-body pain.

An akinetic crisis can be brought on if you abruptly stop taking Parkinson’s medication, or if you develop an infection. These can cause Parkinson’s symptoms to suddenly get worse, including making it more difficult for you to swallow pain medication.

Akinetic crisis needs urgent medical help. If it looks like you or someone else is experiencing akinetic crisis, call 999.

Headaches

Headaches can happen at any stage of Parkinson’s and are sometimes caused by Parkinson’s drugs. They may also be related to musculoskeletal (muscle) pain in your neck and poor posture that means you get tension in your shoulders, upper back and neck. This is sometimes called coat hanger pain.

Normally, over-the-counter painkillers are enough to help with headaches. If your headaches are no longer helped by the medication you are taking to treat them, tell your GP, specialist or Parkinson’s nurse.

Assessing pain

If you have pain, the best thing to do is speak to your GP, specialist, Parkinson’s nurse or physiotherapist. These healthcare professionals can talk to you about treatments that are right for you.

When you talk to your healthcare professional, they may ask you:

for more information about pain you have had in the past
where the pain is in your body
about the level of pain you are having
about the effect the pain is having on your daily life.

They also may ask any other symptoms you may have, to check if another illness could be causing your pain.

You may find it helpful to download and complete our non-motor questionnaire for Parkinson's. This will help your healthcare professional to assess your non-motor symptoms, including pain.

Keeping track of your pain

To help you notice any patterns in your pain you could write down some details about the pain you experience. For example, you could track:

where the pain is in your body
how the pain feels
how long the pain lasts
what time of day the pain occurs and how often
whether the pain is worse at certain times of day
any other details you think are important, including how it affects you day to day.

This information can help you explain your pain symptoms to your specialist or Parkinson’s nurse. They may use the King’s Parkinson’s Disease Pain Scale or Parkinson disease pain classification system to find out more.

Treatments for pain

Sometimes, common ways of reducing pain can help. These may include:

doing regular gentle physical activity
massage
taking painkillers
changing the timing of your Parkinson’s medication, after discussion with your specialist or Parkinson’s nurse.

Treating pain in people with Parkinson's can be difficult. The best thing to do is to find the cause of the pain. Speak to your GP, specialist or Parkinson's nurse. They are there to help.

Usually, your GP will be able to help you manage more common types of pain, such as shoulder pains and headaches.

Other types of pain, such as pain caused by involuntary movements or burning mouth syndrome, may need the help of your specialist.

Pain clinics

If you’re finding it difficult to manage your pain, you can ask your GP about a referral to a specialist pain clinic. Services vary in different areas, but pain clinics may offer:

medication
exercise
pain-relief injections
physiotherapy
psychological therapy
complementary therapies.

In some cases, a pain clinic may offer you a pain management programme (PMP). A PMP focuses on improving your quality of life, not just reducing your pain.

Sessions take place in a group of other people who are living with pain. They may include:

group discussions
gentle exercise
management of your feelings about living with long-term pain
relaxation and mindfulness techniques
ways to pace yourself to help limit sudden bursts of pain.

Common painkillers

There are a number of painkillers available without prescription that can ease pain. These include:

paracetamol
co-codamol
non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen.

You can buy co-codamol, which is paracetamol combined with codeine, from a pharmacy. A prescription is needed for higher doses. Co-codamol can cause constipation so it might not be suitable for some people with Parkinson’s.

For many people, paracetamol has few side effects, and you can take 2 500mg tablets of paracetamol up to 4 times in 24 hours. If you are taking paracetamol as a syrup, powder that you add to water to drink or a suppository, then check the dosage on your medication package.

Don’t take co-codamol with paracetamol or other medicines containing paracetamol, unless you’ve been advised to by your doctor. This is because co-codamol already contains paracetamol and having too much paracetamol can be dangerous. Lemsip, Night Nurse and co-dydramol are common medicines that also contain paracetamol.

Find more information about paracetamol and a full list of possible side effects on the NHS website.

Ibuprofen

NSAIDs like ibuprofen may help with pain caused by inflammation, such as joint or muscle pain. It is available in various forms, including tablets, gels, liquids and sprays that can be applied directly to the skin. However ibuprofen is not suitable for everyone.

Speak to your GP or pharmacist before using it if you:

have a history of stomach ulcers, kidney or liver problems or certain heart conditions
are taking medicine to prevent blood clots.

It can also cause digestive side effects such as wind, indigestion or feeling sick.

Using NSAIDs long-term can increase the risk of side effects. For this reason NSAIDs should be taken at the lowest effective dose for the shortest possible time.

It’s important to discuss your choice of painkiller with your GP, specialist or Parkinson’s nurse. Never take more than the recommended dose of any medicine.

Your GP, specialist or Parkinson’s nurse can help you manage pain, including more severe or chronic pain.

Physical activity

How can physical activity help?

Pain can make the thought of doing physical activity more difficult. But physical activity can help you to manage pain.

Physical activity can help you:

keep your joints flexible
manage your weight
strengthen your muscles
improve your mood
keep fit and healthy.

When you start becoming more physically active and, you may find that it’s uncomfortable at first. But as your body gets used to the new movement, in the long term it can help you manage chronic pain.

Exercise for acute pain

For acute pain, it’s best to start with gentle exercises. These exercises will usually be recommended by a healthcare professional such as a physiotherapist.

Functional exercise

For chronic or persistent pain, it’s a good idea to build on what you can already do, with functional exercise. This involves training your muscles to perform common movements that you might do at home or at work.

Ideas include:

taking items in the supermarket off shelves and into your trolley
carrying your shopping up a kerb or step back to your house or car
moving items from a shopping bag into your fridge.

Read from the experts how to safely carry out these functional strength activities.

Exercises to try

There are some simple exercises that you can try around the house to help make daily tasks easier when you have pain:

If you experience pain in your legs, keep them strong by practising standing up and sitting down in a chair.
If your shoulders are aching, start by loosening them with some shoulder rolling actions, then by lifting an object that is slightly weighty (such as a tin of beans) from a shelf, and then replacing it. This increases the range of movement in your back, shoulders and arms, and your strength.

Improve your general fitness

Increasing your level of fitness can help you manage your weight and ensure your joints aren’t under any added pressure. You could try walking, swimming, dancing or gardening. It’s up to you.

Many of our groups have exercise classes you can join and there are online classes to join from home as well. Find a class online or call our helpline free on 0808 800 0303 to find one near you.

We also have podcasts, YouTube videos and other resources to keep you active. Find our resources and read our information on staying active.

Complementary therapies

Complementary therapies are treatments used alongside conventional medicine prescribed by your healthcare professional.

There’s some evidence that acupuncture, the Alexander technique or massage may help reduce pain in people with Parkinson’s.

For other therapies, there isn’t currently any evidence that they help, although some people with Parkinson’s say they have found them helpful. This includes the Bowen technique, CBD patches, Feldenkrais method, herbal medicine, osteopathy and reiki.

It’s important to speak to your doctor before trying a complementary therapy if you have a pre-existing condition, including Parkinson’s. This is because certain complementary therapies might interact with medications or other treatments you’re having for your Parkinson’s.

You should always make sure you go to a trained, registered (where relevant) and fully insured therapist. Your GP, specialist or Parkinson’s nurse may be able to recommend someone.

The NHS has more information including a useful list of questions to ask a complementary therapy practitioner before you start treatment with them. Find more information on complementary therapies on the NHS website.

Pain research

Pain and Parkinson’s research

There’s still a lot we don’t yet know about pain in Parkinson’s, but thanks to recent research, we do know that Parkinson’s can cause pain areas in the brain to become overactive.

Researchers are working hard to find ways to try and reduce these overactive pain areas, although there is no proven treatment at the moment. Research is also looking into the different types of pain that people with Parkinson’s have and how each one could be treated differently.

Find out more about Parkinson’s research and how you can get involved.

Helpline and other contacts

Our helpline and other useful contacts

Our helpline

Call our helpline free on 0808 800 0303 for advice on pain or any aspect of living with Parkinson's.

Other useful contacts

Action on Pain offers support and advice for people living with chronic pain. Visit the Action on Pain website.

Pain Concern provides information to support people living with pain. This includes ways to manage pain yourself to a tool to help you when speaking to your healthcare professional about your pain. Visit the Pain Concern website.

Parkinson's and Pain

Ray and Fiona, his Parkinson's physiotherapist, discuss what it’s like to live with pain as a result of Parkinson's, and show some exercises to help manage it.

Watch more