Pain in Parkinson’s




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Pain in Parkinson’s

Not everyone with Parkinson’s has the same symptoms.1 Pain can be a major issue for some people with Parkinson’s, but not for others.1 This information sheet looks at the types of pain associated with the condition and how they can be managed.


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“I tend to get muscle cramps and rigidity in the morning when I wake up. It can be difficult to cope with.”

Judy, diagnosed in 1990

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Diagnosing and treating pain in people with Parkinson’s can be difficult2 and often, common ways of reducing pain, such taking painkillers or doing regular, gentle exercise may not help.
The best thing to do is to find the cause of the pain, so speak to your GP, specialist or Parkinson’s nurse.
Usually, your GP will be able to help you to manage the more common types of pain, such as shoulder pains and headaches. Certain other types of pain, however, such as pain caused by involuntary movements or burning mouth, may need the help of your specialist.

It may help if you, or your carer (if you have one), keep a diary about how pain affects you and when.


Find out more: see our information sheets Keeping a diary: people with Parkinson’s and Keeping a diary: for carers.



What are the main types of pain associated with Parkinson’s?



Muscle (musculoskeletal) pain

This is the most common type of pain experienced by people with Parkinson’s.2 It comes from the muscles and bones, and is usually felt as an ache around your joints, arms or legs. The pain stays in one area and doesn’t move around your body, or shoot down your limbs. These pains may increase as you get older, and may also get worse because of your Parkinson’s.2


Simple painkillers, such as anti-inflammatory medications, and regular exercise should help. You may also find physiotherapy useful.3

Find out more: see our information sheet Physiotherapy and Parkinson’s.




Muscle cramps


Muscle cramps may occur due to a variety of causes in Parkinson’s and may be painful. Muscle cramps associated with Parkinson’s can happen at any time, night or day. At night they may cause pain in your legs and calf muscles as well as restlessness, which leads to disrupted sleep.4
Trying to move around may help. You can also try to soothe cramps by stretching and massaging the affected muscle.5
Although there is limited evidence to show that physiotherapy can help with muscle cramps, some people may find it helpful.6
For some people, a drink of tonic water at night or taking a quinine tablet may help. Speak to your medical team to find out whether this is a good option for you.7


Pain caused by involuntary muscle contractions (dystonia)2


Involuntary muscle contractions or dystonia can affect body parts such as toes, fingers, ankles or wrists, and make the affected part go into spasm.

Contractions are often connected to levodopa and are affected by the changes in the type and timing of your Parkinson’s medication. The pain caused by the contractions often happens in the early morning, and using a medication at night that enters your body slowly instead of all at once may help.

Speak to your specialist or Parkinson’s nurse (if you have one) about how best to manage any pain caused by involuntary contractions.

Find out more: see our information sheet Muscle cramps and dystonia.


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I tend to experience pain if I stay in the same position for a long period of time. I find taking regular breaks and moving around can help.”
Ali, diagnosed in 2005

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Shooting pain (radicular pain)

This is a sharp, often shock-like shooting pain that travels down the arm or leg, and may involve the fingers and toes. Tingling and numbness, or a burning feeling in the toes and/or fingers is also common in people with Parkinson’s.8


Shooting pain is usually the result of a trapped nerve within the spinal cord around the neck or lower back.8 Nerves can get trapped by discs that stick out, which normally act as pillows between the bony vertebrae, or due to arthritis of the spine.
Speak to your GP if you are experiencing this type of pain. In most cases, simple painkillers and regular, gentle exercise may be enough to treat the problem.9
Shooting pain that won’t go away is rare, but if you experience this speak to your specialist. You may need some tests, such as an MRI scan of the spine, to rule out compression of the nerve roots at the spinal cord.9

Pain caused by involuntary movements (dyskinetic pain)2

This sort of pain is not limited to any body part and can be described as a deep, aching sensation. It can occur because of involuntary movements (dyskinesia) that some people with Parkinson’s experience. It can happen before, during or after movement.


If the pain occurs before involuntary movements, it could be a warning sign that they are about to start. If the pain occurs during severe involuntary movements, it may be caused by the twisting action of the movements. Involuntary movements can make shooting (radicular) pain worse if there is an underlying trapped nerve.
Speak to your GP, specialist or Parkinson’s nurse if you are experiencing dyskinetic pain – your Parkinson’s medication may need adjusting.

Find out more: see our information sheet Muscle cramps and dystonia.



Restless legs syndrome

This can cause symptoms such as pins and needles, painful sensations or burning of the legs10. You may feel an irresistible urge to move your legs when relaxing, for example while sitting watching TV or going to sleep.


Night-time pain related to restless legs may be treated with Parkinson’s medication, such as dopamine agonists. Sometimes other medicines may be also be recommended.10 Speak to your GP, specialist or Parkinson’s nurse for more information.

Find out more: see our information sheet Restless legs syndrome and Parkinson’s.



Are there any other types of pain associated with Parkinson’s?

Other types of pain associated with Parkinson’s are less common. These are described below.



Shoulder or limb pain


This is a pain and stiffness affecting just one side of the body, usually an arm or leg. It is constant and aching. People who experience this type of pain may have difficulty making fine finger movements, or they may find that one of their feet drags when they walk.
For some people, shoulder pain may be the first sign of Parkinson’s11 and it is sometimes called ‘frozen shoulder’, though this kind of pain may be caused by many other issues, such as injury or surgery. Parkinson’s may be suspected if a constant, aching pain develops in a person’s arm or leg, and the limb becomes progressively stiffer.
If Parkinson’s is diagnosed, this pain may improve with Parkinson’s medication. For some people, a regular course of physiotherapy may be useful.
If the pain doesn’t go away, you may need to take painkillers. You may also be referred to a local ‘pain team’ or rheumatologist (a doctor who specialises in arthritis and related conditions). If you have a frozen shoulder, you may need an injection of steroids into the joint.12

Pain in the mouth and jaw


Some people with Parkinson’s can experience a burning sensation or pain in their mouth or jaw area.13 This is sometimes called ‘burning mouth syndrome’.This is a rare problem and can happen at any stage of the condition.
A dry mouth can lead to higher rates of tooth decay and gum disease.14 It may also cause dentures to become loose and difficult to control, which can cause pain. It’s very important that you visit the dentist if you are in pain or feel a burning-sensation in the mouth.

Dryness of the mouth can be caused by some Parkinson’s medications (particularly anticholinergics).15 Speak to your GP, specialist or Parkinson’s nurse if you have any concerns, but do not stop taking the drugs before getting professional advice.


There are also things that you can do yourself to ease pain in the mouth. These include drinking water regularly to keep your mouth moist and removing dentures at night to give your mouth a chance to recover.

Find out more: see our information sheet Dental health and Parkinson’s.



Akinetic crisis and pain


This type of pain may occur in the advanced stages of Parkinson’s. The symptoms include severe stiffness, fever, pain in the muscles and joints, headaches and, sometimes, whole-body pain.
Some people occasionally experience this type of pain if their Parkinson’s symptoms suddenly get worse. This can be brought on by abrupt withdrawal of Parkinson’s medication or by infections.16 Severe stiffness in the muscles may also be the cause.
If you have any concerns about this type of pain, speak to your GP, specialist or Parkinson’s nurse.

Headaches


Headaches can occur at any stage in your condition and occasionally may be caused by the medication used to treat Parkinson’s.15
Normally over-the-counter painkillers are enough to help with the pain. If you do experience drug-resistant headaches, tell your GP, specialist or Parkinson’s nurse.
Try not to take a large number of tablets at one time, particularly if you are also taking medication for high blood pressure or heart problems. You should space out the time between taking different types of tablets because together they may actually cause headaches.17 Speak to your GP, specialist or Parkinson’s nurse about how to take your medication in the most appropriate way.

Central pain

Sometimes people with Parkinson's can have a constant, dull, aching pain that affects most of the body. This type of pain is called ‘central pain’2 and is related to Parkinson's itself. Normally pain happens because of damage to the tissues of the body. Parkinson's can affect the way the body experiences pain and can cause pain in the body even though there isn’t any. This type of pain is not properly understood and can be difficult to treat. Central pain sometimes improves with Parkinson's medication, and drugs such as duloxetine may help with this type of pain.2


If you have any concerns about central pain, speak to your GP, specialist or Parkinson’s nurse.

More information and support

At the moment, relatively little is known about pain in Parkinson’s, which means it isn’t always discussed or treated. We’re currently funding the largest-ever study into pain which we hope will help us understand why people with Parkinson’s experience pain, and the best way to manage it. To keep up to date with all of our research, visit parkinsons.org.uk/research



Parkinson’s nurses


Parkinson’s nurses provide expert advice and support to people with Parkinson’s and those who care for them. They can also make contact with other health and social care professionals to make sure your needs are met.

The role of the Parkinson’s nurse varies. Each will offer different services, aiming to meet local needs. Some nurses are based in the community, whereas others are based in hospital settings.

Many Parkinson’s nurses are independent prescribers. This means they can prescribe and make adjustments to medication, so someone with Parkinson’s doesn’t always need to see their specialist for changes to or queries about their Parkinson’s drugs.

Parkinson’s nurses may not be available in every area, but your GP or specialist can give you more details on local services.

You can find out more at parkinsons.org.uk/nurses

Information and support from Parkinson’s UK

You can call our free confidential helpline for general support and information. Call 0808 800 0303 (calls are free from UK landlines and most mobile networks) or email hello@parkinsons.org.uk. We run a peer support service if you’d like to talk on the phone with someone affected by Parkinson’s who has faced similar issues to you. The service is free and confidential – ring the helpline to talk to someone about being matched with a volunteer.


Our helpline can also put you in touch with one of our local information and support workers, who give one-to-one information and support to anyone affected by Parkinson’s. They can also provide links to local groups and services.
We also have self-management programme for people with Parkinson’s, partners and carers. It is an opportunity to reflect on life with the condition, learn about self-management and think about the future. To find out if there is a group near you visit parkinsons.org.uk/selfmanagement

Our website parkinsons.org.uk has a lot of information about Parkinson’s and everyday life with the condition. You can also find details of your local support team and your nearest local group meeting at parkinsons.org.uk/localtoyou


You can also visit parkinsons.org.uk/forum to speak with other people in a similar situation on our online discussion forum.
Thank you

Thank you very much to everyone who contributed to or reviewed this information sheet:


K Ray Chaudhuri, Professor and Head, National Parkinson Foundation Centre of Excellence, Kings College Hospital
Anna Sauerbier, BRC Clinical Fellow in Movement Disorders, National Parkinson Foundation Centre of Excellence, Kings College Hospital
Monty Silverdale, Consultant Neurologist and Movement Disorder Specialist, Salford Royal Foundation Trust
Thanks also to our information review group and other people affected by Parkinson’s who provided feedback.
How to order our resources
0845 121 2354
resources@parkinsons.org.uk
Download them from our website at parkinsons.org.uk/publications
We make every effort to make sure that our services provide up-to-date, unbiased and accurate information. We hope that this will add to any professional advice you have had and will help you to make any decisions you may face. Please do continue to talk to your health and social care team if you are worried about any aspect of living with Parkinson’s.

We’re the Parkinson’s support and research charity. Help us find a cure and improve life for everyone affected by Parkinson’s.
Can you help?
At Parkinson's UK, we are totally dependent on donations from individuals and organisations to fund the work that we do. There are many ways that you can help us to support people with Parkinson's. If you would like to get involved, please contact our Supporter Services team on 020 7932 1303 or visit our website at parkinsons.org.uk/support. Thank you.

Parkinson’s UK

Free* confidential helpline 0808 800 0303

(Monday to Friday 9am–8pm, Saturday
10am–2pm). Interpreting available.

Text Relay 18001 0808 800 0303


(for textphone users only)

hello@parkinsons.org.uk

parkinsons.org.uk

*Calls are free from UK landlines and most


mobile networks.

Last updated February 2014. Next update available February 2016.

© February 2014. Parkinson’s UK is the operating name of the Parkinson’s Disease Society of the United Kingdom. A charity registered in England and Wales (258197) and in Scotland (SC037554).


References

1. NHS choices: Parkinson’s symptoms

http://www.nhs.uk/Conditions/Parkinsons-disease/Pages/Symptoms.aspx [Accessed 3/12/13]
2. Ha, Jankovic J (2012) Pain in Parkinson's disease. Movement Disorders 2012 Apr;27(4):485-91
3. Ford, B (2010) ‘Pain in Parkinson's disease’ Movement Disorders 25,51 100
4. National Collaborating Centre for Chronic Conditions (2006) Parkinson's disease: national clinical guideline for diagnosis and management in primary and secondary care. Royal College of Physicians. p124
5. CKS Leg cramps. http://cks.nice.org.uk/leg-cramps#!scenariore commendation

[Accessed: May 14 2013]


6. Blyton F et al (2012) Non-drug therapies for lower limb muscle cramps. Cochrane Database Syst Rev. 2012 Jan 18;1:CD008496
7. CKS Leg cramps

http://cks.nice.org.uk/leg-cramps#!scenariorecommendation:1 [Accessed 4/12/13]


8. Ford, B (2010) ‘Pain in Parkinson's disease.’ Movement Disorders 25,51 98–103
9. CKS Sciatica (lumbar radiculopathy)

http://cks.nice.org.uk/sciatica-lumbar-radiculopathy#!scenariorecommendation:2 [Accessed 3/10/2013)


10. NHS choices

http://www.nhs.uk/conditions/restless-leg-syndrome/pages/symptoms.aspx [Accessed 3/12/13]


11. Farnikova K et al (2013) Musculoskeletal problems as an initial manifestation of Parkinson's disease: a retrospective study. J Neurol Sci. 2012 Aug 15;319(1-2):102-4
12. CKS (formerly Prodigy) (2013) Shoulder pain. http://cks.nice.org.uk/shoulder-pain#!scenariorecommendation:5

[Accessed: May 14 2013]


13. Coon EA, Laughlin RS (2012) Burning mouth syndrome in Parkinson's disease: dopamine as cure or cause? J Headache Pain. 2012 Apr;13(3):255-7.
14. Muller, T et al (2011) ‘Caries and periodontal disease in patients with Parkinson’s disease’ Spec Care Dentist 31(5): 178-81.
15. Scottish Intercollegiate Guidelines Network (2010). ‘Diagnosis and pharmacological management of Parkinson’s disease: A national clinical guideline’ (SIGN guideline 113); 55
16. Simonetto M (2008) ‘Acute Akinesia, an unusual complication in Parkinson's Disease: a case report.’ Neurol Sci. 2008 Jun;29(3):181-3



Pain in Parkinson’s (2014)

If you have comments or suggestions about this information sheet, we’d love to hear from you. This will help us ensure that we are providing as good a service as possible.
We’d be very grateful if you could complete this form and return it to Resources and Diversity, Parkinson’s UK, 215 Vauxhall Bridge Road, London SW1V 1EJ. Or you can email us at publications@parkinsons.org.uk. Thanks!
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