Diagnosing and treating pain in people with Parkinson’s can be difficult and often, common ways of reducing pain, such taking painkillers or doing regular, gentle exercise may not help.
Usually, your doctor or Parkinson’s nurse specialist (if you have one) will be able to help you to manage the more common types of pain, such as shoulder pain and headaches. Certain other types of pain, however, such as pain caused by involuntary movements or burning mouth, may need the help of your Parkinson’s specialist.
To ensure Parkinson’s pain is assessed and diagnosed efficiently, a specific scale has been designed. King’s Parkinson’s Pain Scale (KPPS)1 is a validated scale which covers the common types of Parkinson’s related pain. The doctor or Parkinson’s nurse can use this to help understand the type of Parkinson’s pain you have and assess what needs to be done to help you further.
As you may not see your doctor or Parkinson’s nurse frequently, it may help for you, or your carer (if you have one) to keep a diary and complete the specific Parkinson’s pain questionnaire (King’s PD Pain Quest2). This validated, patient-friendly questionnaire is designed to allow you to assess the type of pain you are experiencing, and help your doctor or Parkinson’s nurse identify and treat the pain more quickly.
The following section on ‘Types of pain in Parkinson’s’ suggests how different types of pain may be treated. For some types of pain, exercise may help. A physiotherapist can advise further. Relaxation techniques and complementary therapies may also be beneficial.
1. Chaudhuri KR, Rizos A, Trenkwalder C, Rascol O, Pal S, et al. (2015) King’s Parkinson’s Disease Pain Scale, the first scale for Pain in PD: an international validation. Mov Disord. 2015 Oct;30(12):1623-31.
2. Rizos, A.M., Martinez-Martin, P., Pal, S., Carroll, C., Martino, et al. A multicentre study of the patient's perspective: The first Parkinson's disease pain questionnaire (King's PD pain quest) [abstract]. Mov Disord 2015;30 Suppl 1:1099
Below are the different types of pain in Parkinson’s which are in line with the KPSS.
General musculo-skeletal pain
Musculo-skeletal pain is the most common type of pain in Parkinson’s. It may worsen with age and as the condition progresses. This type of pain comes from the muscles and bones and is usually felt as an ache around the joints in the arms and leg. It tends to be localised and static (rather than shooting down a limb). It can also be caused by cramps and spasms as a result of muscle rigidity.
Treatment: Simple painkillers such as paracetamol and anti-inflammatory medications generally help. Musculo-skeletal pain often responds well to regular exercise and, in some cases, physiotherapy.
Shoulder and limb pain
For some people a constant ache and stiffness that affects only one side of the body (generally an arm or leg) is one of the first signs of Parkinson’s. This can make fine motor movements difficult and one foot may drag when walking.
This type of pain is sometimes called ‘frozen shoulder’. It can also be caused by injury or surgery.
Treatment: In Parkinson’s such pain may be relieved by Parkinson’s medications and for some people physiotherapy is beneficial. If pain persists, you may need to take painkillers. You may also be referred to a ‘pain clinic’ or rheumatologist (a doctor who specialises in arthritis and related conditions). A steroid injection into the joint is sometimes used to treat frozen shoulder.
Coat hanger pain
The area of the body affected by this pain resembles a coat hanger, hence its name. It starts at the back of the neck and then radiates to the head and shoulder muscles. It is rare in Parkinson’s and the cause is unclear, although some believe it occurs when the supply of blood to the muscles in the neck and shoulder is reduced as a result of postural hypotension (a sharp drop in blood pressure on standing up). More commonly this type of pain occurs in people who have multiple system atrophy (MSA), another form of Parkinsonism.
Treatment: You should discuss coat hanger pain with your doctor. He or she may refer you to a specialist movement disorder centre or clinic.
Chronic pain in internal organs
Cramps may occur in internal organs, particularly the bowel (causing abdominal pain) and the bladder (causing pain and an urgent need to go to the toilet).
Treatment: Muscle relaxants can help, as can Parkinson’s medication such as controlled release levodopa. If bowel cramps are related to severe ‘off’ periods, injections of apomorphine may alleviate them. A drink of tonic water or a quinine tablet at night can also be beneficial, but this option must be discussed with your doctor first as they can cause blood abnormalities.
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 arises 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.
Treatment: Central pain sometimes improves with Parkinson's medication, and other drugs such as duloxetine may also help. If you have any concerns about central pain, speak to your doctor, or Parkinson’s nurse if you have one.
Muscle cramps may occur during the day or night and can disrupt sleep. Commonly they cause pain in the legs and calf muscles, as well as restlessness. Wearing off (when medication becomes less effective and symptoms return) can also cause cramps and painful dystonia (involuntary muscle contraction).
Treatment: Gentle movement together with stretching and massaging the affected muscles often helps.
Pain caused by involuntary muscle contractions (dystonic pain)
Dystonia (involuntary muscle contractions) mainly affects the body’s extremities (toes, fingers, ankles or wrists) and causes painful muscle spasms, particularly early in the morning or at night. Contractions are often related to levodopa and are affected by any changes in the type or timing of your medications.
Treatment: Prolonging ‘on’ time when your medication is working well can help. If you experience this pain early in the morning it may help to take a type of medication before you go to bed which is released slowly into your body during the night. If this does not help your doctor may suggest injections of apomorphine or, in severe cases, injections of botulinum toxin.
Talk with your doctor or Parkinson’s nurse specialist for advice.
Pain caused by dyskinesia (dyskinetic pain)
This type of pain can affect any part of the body and is felt as a deep ache. It can occur because of the involuntary movements (dyskinesia) that some people with Parkinson’s experience. It can happen before, during or after you move.
If the pain occurs before involuntary movements, it may be a warning sign that they are about to begin. If it happens during severe involuntary movements, it may be caused by the uncomfortable twisting movements of dyskinesia. This can be particularly painful if there is an underlying trapped nerve.
Treatment: Speak with your doctor, or Parkinson’s nurse if you have one, as your Parkinson’s medications may need to be adjusted.
Akinetic crisis and pain
This type of pain may occur in the advanced stages of Parkinson’s. 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. Severe stiffness in the muscles may also be the cause.
Treatment: speak with your doctor, or Parkinson’s nurse if you have one, for advice.
Restless legs syndrome (akathisia)
Restless Legs Syndrome (RLS) can cause symptoms such as pins and needles, painful sensations or a burning sensation in the calves and/or legs, which improves with movement. These symptoms tend to occur most during quiet wakefulness, for example when watching television or when drifting off to sleep, or during sleep. Some patients experience pain when turning in bed at night too.
Treatment: Night-time pain relating to restless legs may be relieved by Parkinson’s medications, for example controlled release levodopa or a long acting dopamine agonist. Talk with your doctor, or Parkinson’s specialist nurse if you have one, for more information and advice.
Pain while turning in bed at night
Some patients experience pain when they try to turn around in bed at night, which can disrupt sleep and lead to disturbed nights.
Treatment: Speak with your doctor or Parkinson’s nurse if you have one, as your Parkinson’s medications may need to be adjusted. You may need a better cover with anti-Parkinson drugs during the night.
Mouth and jaw pain
Some people with Parkinson’s experience a burning sensation or pain in their mouth or jaw area. This is sometimes called ‘burning mouth syndrome’. This is a rare problem that can happen at any stage of the condition. Patients can also experience pain when chewing, as well as developing pain during the night as a result of painful teeth grinding.
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 doctor or Parkinson’s nurse if you have any concerns, but do not stop taking the drugs before getting professional advice.
Treatment: 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.
Swelling and pain
Patients with Parkinson's are given dopamine agonists, which can sometimes cause swelling (oedema). These swellings can occur in the limbs leading to burning pain.
Treatment: The doctor or Parkinson's nurse can adjust your medication or see alternatives to treat this. Talk to your doctor, or Parkinson’s nurse for specific advice.
Shooting (radicular) pain and paresthesia (tingling, pricking sensation)
Radicular pain is a sharp pain that shoots down a limb and often affects fingers or toes. Paresthesia is sometimes described as a feeling of ‘pins and needles’ or perhaps numbness in a limb which has ‘fallen asleep’. Such pain is usually related to trapped nerves in the spinal cord and can feel similar to an electric shock, a tingling or a burning sensation.
Treatment: Painkillers and exercise will generally settle the pain. If not your specialist may refer you for tests such as an MRI scan to check for a trapped nerve in the spinal cord. A neck collar may help to relieve pressure on the nerve in some cases.
For people with Parkinson’s, headaches can occur at any time and can be caused by medications such as dopamine agonists, amantadine and entacapone.
Treatment: Such headaches generally respond well to over-the-counter painkillers but remember to space out taking tablets and try not to take too many as this can bring on headaches!
Severe headaches that are not alleviated by painkillers are rare in Parkinson’s and should be investigated by a neurologist. You should tell your doctor if you get headaches as they can have many causes – not all necessarily related to Parkinson’s.