Pain can be a major issue for some people with Parkinson's, but not for others.
There are different types of pain associated with Parkinson's and a range of way to manage it.
What are the main types of pain associated with Parkinson's?
Muscle (musculoskeletal) pain
This is the most common type of pain people with Parkinson's experience.
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.
Muscle cramps may have 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.
Trying to move around may help. You can also try to soothe cramps by stretching and massaging the affected muscle.
Although there is limited evidence to show that physiotherapy can help with muscle cramps, some people may find it helpful.
For some people, a drink of tonic water at night or taking a quinine tablet may help. Speak to your healthcare professional to find out whether this is a good option for you.
Pain caused by involuntary muscle contractions (dystonia)
Involuntary muscle contractions (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 changes in the type and timing of your Parkinson's medication.
The pain caused by the contractions often happens in the early morning. Taking medication at night that enters your body slowly, instead of all at once, may help.
Some people also say that relaxation techniques help to manage the pain.
Speak to your specialist or Parkinson's nurse about how best to manage any pain caused by involuntary contractions.
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 in the toes and/or fingers is also common in people with Parkinson's.
Shooting pain is usually the result of a trapped nerve within the spinal cord around the neck or lower back. Nerves can get trapped by discs that stick out, which normally act as pillows between the bony vertebrae.
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.
Heated wheat bags and massage may also be helpful.
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.
Pain caused by involuntary movements (dyskinetic pain)
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.
People with Parkinson's have said that when pain starts before involuntary movements, it is sometimes a warning sign that they are about to start.
In other cases, pain starting 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 are experiencing dyskinetic pain – your Parkinson's medication may need adjusting.
Restless legs syndrome
This can cause symptoms such as pins and needles, painful sensations or burning of the legs.
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.
Are there any other types of pain associated with Parkinson's?
Other types of pain associated with Parkinson's are less common.
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 report having trouble making fine finger movements, or may find that one of their feet drags when they walk.
For some people, shoulder pain may be the first sign of Parkinson's and it is sometimes called 'frozen shoulder'. However, this kind of pain may be caused by many other issues, such as being immobile for an extended period of time.
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.
Pain in the mouth and jaw
Some people with Parkinson's can experience a burning sensation or pain in their mouth or jaw area. 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. 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).
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.
Akinetic crisis and pain
This type of pain may occur in the advanced stages of Parkinson's. The symptoms include severe stiffness and fever.
People with Parkinson's report feeling pain in the muscles and joints, headaches and, sometimes, whole-body pain during akinetic crisis.
Some people occasionally experience this type of pain if their Parkinson's symptoms suddenly get worse. This can be brought on if you suddenly stop taking Parkinson's medication or by infections. Severe stiffness in the muscles may also be the cause.
Headaches can occur at any stage in your condition and occasionally may be caused by the medication used to treat Parkinson's.
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.
Speak to your GP, specialist or Parkinson's nurse about the best way to take your medication.
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' 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 when there is no obvious cause. 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.
If you have any concerns about central pain, speak to your GP, specialist or Parkinson's nurse, as it may not be related to your Parkinson's.
How is pain assessed?
If you're experiencing pain, the best thing to do is speak to your GP, specialist or Parkinson's nurse as they can advise you on appropriate treatments.
You may find it helpful to fill in the non-motor questionnaire for Parkinson's. This will help your healthcare professional to assess your non-motor symptoms, including pain.
It may also be helpful to write down some details about the pain you experience. For example, you could record:
- where the pain is in your body
- the type of pain
- when you feel it and how often
- whether it is worse at certain times of day
- any other details you think are important
This can help you to explain your pain symptoms to your specialist or Parkinson's nurse, who may use the King's Parkinson's Disease Pain Scale to find out more.
How can pain be treated?
Sometimes, common ways of reducing pain, such as doing regular gentle exercise, massage or taking painkillers, can help.
But treating pain in people with Parkinson's can be difficult. 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 manage the more common types of pain, such as shoulder pains and headaches.
Certain other types of pain, 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, keep a diary about how pain affects you and when. This will help you explain your symptoms to your healthcare professional.
There are a number of painkillers that are available without a prescription, which may help ease your pain, including paracetamol and ibuprofen.
You can also buy paracetamol in combination with codeine (co-codamol), although higher doses require a prescription. For many people, paracetamol has few side effects, and you can take 2 tablets of paracetamol up to 4 times a day.
Ibuprofen may work better for inflammatory pain and is available as tablets, gels, sprays or liquids.
Ibuprofen is not recommended for people with some other conditions, such as stomach ulcers or a history of kidney or liver disease. Also long-term use can increase the risk of stomach, kidney and heart problems.
You should discuss your choice of painkiller with your GP or specialist. If your pain is severe or prolonged don't be tempted to go above the recommended doses – see your GP for advice on managing more severe pain.
There may also be other things you can use to manage pain, including complementary therapies.
Complementary therapies are treatments used alongside conventional medicine.
They take a more holistic approach than conventional medicine, aiming to treat the whole person including mind, body and spirit, rather than just the symptoms.
There is evidence to show that some complementary therapies have benefits, but for other therapies, there is no research to prove it has any benefits for people with Parkinson's.
However, we hear from many people affected who feel complementary therapy helps them.
The benefits of complementary therapies will also depend on what you expect from them.
Some therapies people have found helpful for pain include acupuncture, Alexander technique, Bowen technique, chiropractic, Feldenkrais method, herbal medicine, massage therapy, osteopathy and reiki.
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.
Is any research being done into pain and Parkinson's?
At the moment, relatively little is known about pain in Parkinson's.
Recent studies investigating the use of analgesics (painkillers, such as oxycodone) to ease severe pain associated with Parkinson's have shown some positive results, though more research is needed.
We are also currently funding the largest-ever study into pain in Parkinson's, which we hope will help us understand why people with Parkinson's experience pain and the best way to manage it. You can hear more about this study in the video below.
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Understanding pain in Parkinson's
Dr Monty Silverdale is leading the largest-ever study into pain in Parkinson's. In this talk he explains what he hopes the study will prove and how this will help researchers to build treatments in future.