Acknowledgements
We would like to acknowledge the use of information contained in:
Our thanks to Dr Sharon Muzerengi2for her help in reviewing this information.
Pain is an unpleasant and often distressing bodily sensation caused by illness or injury.
It is estimated that up to 50% of people with Parkinson’s experience pain. For some, it is a debilitating sensation, although not as obvious as other symptoms. For others it is the predominant feature of the disease. Despite this, pain is a very under-recognised symptom.
Everyone can remember the alphabet, so the ‘PQRST’ method is very easy to use when identifying, or qualifying, pain:
People with Parkinson’s can experience many different types of pain, including:
This is experienced in the muscles and bones and is usually felt as an ache around the joints in the arms and legs. Very common in Parkinson’s, it tends to be localised and static (rather than shooting down a limb). This type of pain can also be caused by cramps and spasms as a result of muscle rigidity. It often responds well to painkillers (e.g. paracetamol), regular exercise and, in some cases, physiotherapy.
A sharp pain that shoots down a limb and may affect fingers or toes. It is usually related to trapped nerves in the spinal cord and can feel similar to an electric shock, such as tingling or a burning sensation. Painkillers and exercise will generally settle the pain, although an x-ray may be required to locate the trapped nerves. Where severe pain persists, a referral to a neurologist might be necessary to check for compression of the nerve roots at the spinal cord. A neck collar may help to relieve pressure on the nerve in some cases.
This is caused by the dyskinesias that can result from some Parkinson’s medications. It can affect any part of the body and feels like a deep ache. It tends to occur during the day just before, during or after dyskinesias occur. The twisting movements of severe dyskinesias may also cause pain and aggravate radicular pain caused by a trapped nerve.
Dyskinetic pain may also occur because of the wide ranges of responses an individual will have to their anti-parkinsonian medications, depending on, for example, the time of day or whether an ‘off’ period is being experienced. Dystonia can result – particularly early in the morning or during the night - causing spasms and painful cramps from abnormal positioning of the body’s extremities (toes, fingers, ankles or wrists). Prolonging ‘on’ time when the medication is working can reduce this pain. This can be achieved in several ways, such as:
If early morning pain is caused by dystonia resulting from an ‘off’ period, injections of apomorphine may help – this medication is quick to take effect and many people can be taught to self-administer it. Use of long acting dopamine agonists such as the rotigotine skin patch or cabergoline may also help early morning dystonia related to off periods. In severe cases injections of botulinum toxin may be tried.
Occasionally dyskinetic pain may occur when anti-parkinsonian medications are at the peak of their effectiveness, in which case the doctor may suggest reducing the dosage of medication.
This is particularly common in the legs, especially at night (see Restless Legs Syndrome (RLS)). Akathisia is quite difficult to describe – it is often experienced more as a discomfort than a pain. A desire to move the limbs and fidget can interfere with sleep, and the only way to obtain relief is to move the legs or wander. Whilst akathisia tends to be a side effect of anti-parkinsonian drugs, it tends to respond well to a combination of medications. Controlled release levodopa or a long acting dopamine agonist can be beneficial, as well as sleep promoting agents.
These may occur during the day or night and can disrupt sleep. Commonly causing pain in the legs and calf muscles, as well as restlessness. The ‘wearing off ’ effects that are a side effect of the medication can also cause cramps and painful dystonia.
Cramps may also occur in internal organs, particularly the bowel (causing abdominal pain) and the bladder (causing pain and an urgent need to go to the toilet). muscle relaxants can help, as can anti-parkinsonian medication such as controlled release levodopa. If bowel cramps are related to severe ‘off’ periods, injections of apomorphine may alleviate them. Quinine sulphate tablets can also be beneficial, but this option must be discussed with a doctor first as they can cause blood abnormalities.
A constant ache that affects only one side of the body (generally an arm or leg) can be a sign of Parkinson’s onset. Such pain may be relieved by regular anti-parkinsonian medications and physiotherapy. If pain persists, painkillers or a referral to a ‘pain clinic’ or rheumatologist may be necessary. A steroid injection is sometimes used to treat frozen shoulders.
This is rare in Parkinson’s, but can affect people who experience postural hypotension (a sharp drop in blood pressure on standing up). More commonly this type of pain occurs in those who have Multiple System Atrophy (MSA), another form of parkinsonism.
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. 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.
Coat hanger pain should be discussed with the doctor. A referral may be needed to a specialist movement disorder centre or clinic.
For people with Parkinson’s, headaches can occur at any time and can be caused by medications such as dopamine agonists, amantadine and entacapone. Such headaches generally respond well to over-the-counter painkillers. Severe headaches that are not alleviated by painkillers are rare in Parkinson’s and should be investigated by a neurologist if they occur. It is important to consult your doctor about any headaches experienced as they can have many causes – not all necessarily related to Parkinson’s.
Always ‘spread out’ taking your medication. Avoid taking a lot at one time – particularly if you are also taking drugs to treat hypertension or heart disorders. Too many tablets at once can actually cause headaches. Your doctor can advise further.
Pain or burning sensations felt in the mouth may be a result of anticholinergic medications, such as benzhexol, or poorly fitting dentures. Anyone who experiences this should consult their dentist. Regular use of an antiseptic mouthwash can help, as can keeping the mouth moist with sips of water or by sucking a sweet or ice chips. Poorly fitting dentures should be replaced. The anticholinergic medication may need reducing or even discontinuing as it can cause dry mouth, which exacerbates the problem.
This can occur if anti-Parkinson medications are withdrawn abruptly causing Parkinson’s symptoms to suddenly intensify, or if an infection sets in. Such pain can include severe stiffness or rigidity in the joints and muscles, headache, fever and sometimes pain affecting the whole body. It is usually relieved by treating with levodopa.
Some people don’t experience pain at all. ‘Congenital insensitivity to pain’ (or ‘congenital analgia’) is a rare condition where a person cannot feel physical pain. There are generally two types of non-response exhibited: insensitivity when the painful stimulus is not perceived and the patient cannot describe the intensity or type of pain; and indifference whereby the patient does perceive the stimulus, but lacks an appropriate response - they will not flinch or withdraw when exposed to pain.
Health profession that treats people of all ages who have physical problems that occur as a result of injury, illness or ageing. Methods they use include exercise, heat treatments, manipulation and hydrotherapy.
See section on Physiotherapy.
Physicians specializing in the field of neurology (a branch of medicine dealing with disorders of the nervous system ) are called neurologists and are trained to diagnose, treat, and manage patients with neurological disorders. Most neurologists are trained to treat and diagnose adults with neurological disorders.
Pediatric neurologists, nearly always a subspecialty of pediatrics, treat neurological disease in children.
Neurologists may also be involved in clinical research, clinical trials, as well as basic research and translational research.
Involuntary movements that tend to occur in people who have had Parkinson's disease for some years as a side effect of long-term use of Parkinson's medication.
The main type of drug prescribed to treat Parkinson's disease and has been in use since the late 1960s. The aim is to increase the levels of dopamine in the brain. Dopamine cannot be directly replaced because it cannot cross the blood-brain barrier that prevents potentially harmful substances in the blood from entering the brain. Levodopa is a chemical compound that can cross this barrier and is then converted into dopamine.
See also Types of medication available.
A class of drugs used to prolong the duration of action of levodopa. They block an enzyme called catechol-O-methyl transferase (COMT) that breaks down levodopa. This slows the destruction of levodopa in the body.
See also Types of medication available.
A class of drugs that work by stimulating the parts of the brain (know as dopamine receptors ) where dopamine works. Unlike levodopa, they don’t need to be converted by the brain cells first. They may be given as a first treatment to delay the need for levodopa or used in combination with levodopa to treat the side effects caused by long-term treatment.
See also Types of medication available.
Involuntary sustained muscle contractions causing abnormal movements and postures.
See section on Dystonia.
A dopamine agonist drug used to treat Parkinson's disease, which is usually given by injection.
Dopamine agonists have structures that are very similar to dopamine. It imitates the action of dopamine rather than replace it, in the same way levodopa does.
See also Types of medication available
A neurotoxin used in minute doses as a treatment for muscle spasms and dystonia.
MSA is a progressive neurological disorder that causes problems with movement, balance and the automatic functions of the body, such as bladder control, sweating and blood pressure.
More information and support is available from the Sarah Matheson Trust for Multiple System Atrophy – www.msaweb.co.uk
Parkinsonism is the generic name given to a group of conditions that feature the main characteristics of Parkinson’s disease: tremors, rigidity of muscles, mobility problems and bradykinesia (slowness of movement).
About 85% of people with parkinsonism have the most common form, Parkinson’s disease (also known as PD or idiopathic Parkinson’s disease). If you have this type, then this website is for you: it aims to provide all the information you need to manage life with Parkinson’s disease.
The other 15% of people with parkinsonism have different, much rarer conditions.
A class of older drugs that are used to treat Parkinson's. They work by reducing the amount of acetylcholine in the body and thereby facilitate dopamine cell function.
Also called antimuscarinics.
See also Types of medication available.
A dopamine agonist used to treat Parkinson's disease.
See also Types of medication available.
A type of medication used to treat Parkinson's disease.
See also Types of medication available
An anticolinergic used to treat Parkinson's disease.
Also known as trihexyphenidyl.
See also Types of medication available.
A COMT inhibitor used to treat Parkinson's disease.
See also Types of medication available.
Medicine usually used to treat malaria that is also prescribed for night-time leg cramps.
Stiffness of the limbs, joints or body that make movement and bending difficult.
Collective name for conditions that affect a person’s abilities to produce and control movement. They include Parkinson’s disease, restless leg syndrome and dystonia.
Medications used to treat muscular tension and pain.
A dopamine agonist used to treat Parkinson's disease that is administered via a transdermal (skin) patch.
See also Types of medication available.
Term used to describe the gradual return of symptoms that occurs at the end of a dose of levodopa. This pattern appears when a person with Parkinson's disease has been using levodopa for many years.
The part of the urinary tract that receives urine from the kidneys and stores it until urination.
See also section on Bladder Problems
