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The Beyond Pain Foundation

Conditions we support

Conditions guide

Parkinson's disease

Parkinson's is best known for tremor and slow movement. But many people say pain, stiffness and tiredness affect their lives just as much. This guide explains the types of pain in Parkinson's, the treatments available in the UK, and your rights if you want to keep working.

People in the UK with Parkinson's
About 166,000
Diagnosed while of working age
Over 1 in 3
Have pain at some point
4 to 8 in 10
Have fatigue at some point
Up to 2 in 3

This guide is general information, not medical advice. Medicines and treatments must be prescribed or recommended for you by a doctor or pharmacist. We do not give doses here.

What Parkinson's is

Parkinson's is a long-term condition of the brain that slowly gets worse over many years. Nerve cells in one part of the brain are gradually lost. These cells make dopamine, a chemical that helps control movement. With less dopamine, movement becomes slower and muscles become stiff.

The three main symptoms are tremor (shaking), slow movement and stiff muscles. But there are over 40 possible symptoms, including pain, tiredness, poor sleep, low mood, anxiety and problems with balance, memory and smell.

Most people find out they have Parkinson's after the age of 50, and the average age at diagnosis is 69. But over 1 in 3 people living with Parkinson's were diagnosed while of working age, and about 1 in 16 before they were 50. It is a little more common in men. Around 28,000 people in the UK are diagnosed each year.

Thanks to modern treatment, most people with Parkinson's now have a normal or near-normal life expectancy.

Types of pain in Parkinson's

Pain in Parkinson's has several different causes, and you may have more than one type. Working out which type you have helps your team choose the right treatment.

Musculoskeletal pain

The most common type. An aching in the back, neck, shoulders, hips or ankles, caused by stiff muscles and joints that don't move as freely.

Dystonic pain

Strong, painful muscle spasms that can twist the foot, hand or other parts of the body into an unusual position. Often linked to when medicines wear off, for example first thing in the morning.

Nerve pain (radicular)

Sharp, shooting or electric-shock pain down an arm or leg, often from a trapped nerve. Stooped posture can make this more likely.

Central pain

Burning, stabbing, tingling or scalding feelings with no clear cause in the body. It comes from changes in the brain itself and can be harder to treat.

Dyskinetic pain

A deep ache from involuntary, writhing movements (dyskinesia). These can happen after many years of taking levodopa. Changing medicines may help.

Cramps and restless legs

Sudden muscle cramps that last seconds to minutes, or an urge to move the legs with tingling or burning, which can badly disturb sleep.

Stiffness

Rigid muscles are one of the main signs of Parkinson's. Stiffness can make everyday tasks slow and tiring, and is a major cause of aching.

Fatigue

Up to 2 in 3 people have fatigue: a heavy tiredness that rest doesn't always fix. It can come from brain changes, poor sleep, low mood or some medicines.

How symptoms change over time

Parkinson's affects everyone differently, and symptoms can change from day to day, or even hour to hour. There are no fixed stages or timings. Doctors often describe it in broad phases like these:

  1. Before diagnosis

    Early signs

    Symptoms are often mild at first and easy to miss: loss of smell, poor sleep, low mood, stiffness or a slight tremor.

  2. Often several years

    Diagnosis and settling

    Medicines usually work well and symptoms are fairly steady. Many people keep working and stay very active.

  3. Varies widely

    Wearing off

    Medicines may wear off before the next dose is due. You may have "on" and "off" times, with more stiffness, pain or dystonia when "off".

  4. Later years

    Advanced Parkinson's

    Symptoms are harder to control and have a bigger effect on daily life. Specialist treatments such as pumps or deep brain stimulation may be considered.

These phases are a rough guide, not a timetable. Many people stay in the steadier phase for a long time.

When to get urgent help

Call 999 if you have

  • sudden, severe stiffness or being unable to move, with a high temperature or trouble swallowing (this can be a rare emergency called akinetic crisis)
  • signs of a stroke: face drooping, arm weakness or slurred speech
  • a bad fall with a head injury, or you can't get up
  • sudden confusion with a fever

Call NHS 111 if

  • you can't take your Parkinson's medicines, for example because of vomiting or not being able to swallow. These medicines should not stop suddenly
  • you suddenly become much stiffer or slower over a day or two
  • you have new hallucinations or confusion

See your GP or Parkinson's nurse if

  • you have new or worse pain
  • medicines wear off before your next dose
  • you fall asleep suddenly in the day
  • you, or people close to you, notice new urges to gamble, shop, eat or spend
  • you are low, anxious or not sleeping

Diagnosis and referral

If your GP thinks you might have Parkinson's, they should refer you quickly to a specialist, before you start any Parkinson's medicine. This is usually a neurologist, or a geriatrician (a doctor who specialises in older people's health).

There is no single test that proves you have Parkinson's. The specialist diagnoses it from your symptoms, history and an examination of how you move. Sometimes a special brain scan is used to help rule out other causes.

After diagnosis, NICE says you should be seen by your specialist every 6 to 12 months. You should also have a Parkinson's nurse specialist as your main point of contact. Not every area has good nurse coverage. The Parkinson's UK helpline can tell you what is available locally.

You must tell the DVLA you have Parkinson's if you drive. You can still drive in many cases, but not telling them can lead to a fine.

Treatments and medicines

Parkinson's medicines mostly work by replacing dopamine or helping it last longer. They are started and adjusted by your specialist. Getting the right mix often takes weeks to months, and it changes over the years.

Levodopa

Prescription, started by a specialist

The main Parkinson's medicine. It is turned into dopamine in the brain and usually improves movement, stiffness and some pain. It comes combined with another medicine, as co-careldopa or co-beneldopa, as tablets, capsules or liquid. After some years it can cause wearing off and dyskinesia.

Dopamine agonists

Prescription, started by a specialist

Medicines that act like dopamine, such as ropinirole, pramipexole, or rotigotine as a skin patch. They can cause sleepiness and, in some people, compulsive behaviour (see the warning below).

MAO-B and COMT inhibitors

Prescription, started by a specialist

These help your own dopamine or levodopa last longer. Examples are rasagiline and selegiline (MAO-B), and entacapone or opicapone (COMT), which are often added when levodopa wears off too soon.

Simple painkillers

From a pharmacy, or prescribed

Paracetamol and anti-inflammatories such as ibuprofen can help musculoskeletal aches. Ask a pharmacist before taking them with your other medicines.

Nerve pain medicines

Prescription from your GP or specialist

For nerve or central pain, NICE suggests amitriptyline, duloxetine, gabapentin or pregabalin. If one doesn't work or isn't tolerated, another can be tried. They usually take a few weeks to work fully. Lidocaine plasters or creams may help pain in one area.

Botulinum toxin

Injections from a specialist

For painful dystonia that medicine changes don't help. Injections relax the affected muscles. The effect wears off, so they are usually repeated about every 3 months.

Pumps and injections

Specialist hospital teams

For advanced Parkinson's with bad "off" times: apomorphine as an injection pen or a pump under the skin, or levodopa gel or liquid given by a continuous pump.

Two important warnings

Never stop Parkinson's medicines suddenly unless your specialist tells you to. It can cause severe stiffness and a dangerous reaction. If you go into hospital, tell staff your medicines must be given on time.

Dopamine agonists can cause impulse control problems, such as gambling, shopping, eating or sexual urges you can't control. Tell your specialist or nurse straight away if you or your family notice this. It can be treated by changing medicines.

Therapies and specialist options

Medicines are only part of treatment. NICE recommends therapists as part of your care from early on. Ask your GP, specialist or Parkinson's nurse to refer you.

  1. Physiotherapy

    From diagnosis, then whenever problems change

    Exercises for stiffness, posture, balance, walking and pain. NICE says people in the early stages should be referred for assessment and advice. A course is often a few weeks of sessions, then a home programme.

  2. Occupational therapy

    When daily tasks become harder

    Practical ways to manage at home and at work, including fatigue, equipment and changes to how you do tasks.

  3. Speech and language therapy

    When speech, swallowing or saliva are affected

    Help with a quieter voice, swallowing problems and communication aids.

  4. Pain clinic or pain management programme

    If pain isn't controlled by other treatment

    Your GP can refer you to an NHS pain clinic. Clinics may offer medicines, injections, physiotherapy and psychological support. Some run group pain management programmes, usually over several weeks.

  5. Deep brain stimulation

    Advanced Parkinson's, after medicines have been fully tried

    Surgery to place fine wires in the brain, connected to a small device under the skin of the chest. It doesn't cure Parkinson's, but can ease movement symptoms, dystonia and "off" times for some people. Only a specialist centre can assess you.

Self-help and living well

For pain and stiffness

  • Take Parkinson's medicines at the same times every day
  • Do gentle stretches, especially in the morning
  • Try warmth, massage or a TENS machine for aches
  • Notice if pain gets worse when medicines wear off, and tell your team
  • Change position often and use a supportive chair

For energy and wellbeing

  • Aim for about 2.5 hours of activity a week, at a level that suits you
  • Pace yourself to avoid a "boom and bust" cycle
  • Keep regular sleep habits
  • Eat well, drink enough and keep snacks handy
  • Stay in touch with people, and ask about talking therapies if you feel low

Parkinson's UK says being active can be as important as getting your medicine dose right. It can be anything from walking or dancing to boxing classes or chair exercises.

Tips for getting the best treatment

Keep a symptom and pain diary

For a week or two before an appointment, note when you take each medicine, when you feel "on" and "off", and when pain, cramps or dystonia happen. This helps your team see whether pain is linked to your medicine timing. Parkinson's UK has diaries you can download.

  • Make sure you have a Parkinson's nurse and know how to contact them between appointments
  • Write down your questions before appointments. Bring a partner, friend or carer if you can
  • Ask: "What type of pain do you think this is?" and "Could my medicine timing be causing it?"
  • Ask for referrals to physiotherapy, occupational therapy and, if needed, a pain clinic
  • If you are struggling, you can ask your GP for a second opinion from another specialist
  • Carry a card or list of your medicines and timings, especially if you go into hospital
  • Carers can ask their council for a carer's assessment

Parkinson's and work

Parkinson's is likely to count as a disability under the Equality Act 2010 (the Disability Discrimination Act in Northern Ireland). This means you are protected, even at times when your symptoms are well controlled.

You don't have to tell your employer unless there is a health and safety risk. But if they know, they must make reasonable adjustments to remove barriers. Adjustments might include:

  • Flexible hours to work around "off" times
  • Regular breaks and time to take medicines
  • A supportive, adjustable chair
  • A sit-stand desk to ease stiffness
  • Voice-to-text software
  • Adapted keyboards, mice or larger buttons
  • Working from home some days
  • Time off for appointments
  • Changing tasks during bad spells
  • Video calls instead of travel

Access to Work is a government grant that can help pay for specialist equipment, support workers or travel to work. You apply for it yourself. Acas and Citizens Advice can give advice on your rights.

Over 1 in 3 people living with Parkinson's in the UK were diagnosed while of working age. (Parkinson's UK)

Benefits

If you are off sick, you may get Statutory Sick Pay. Depending on how Parkinson's affects you, you may also be able to get Personal Independence Payment (PIP), or Adult Disability Payment in Scotland, whether or not you work. If you can't work or are on a low income, you may qualify for Universal Credit or Employment and Support Allowance. Turn2us, Citizens Advice and the Parkinson's UK helpline can help you check.

How The Beyond Pain Foundation can help

If NHS waits are too long, or the help you need isn't available to you on the NHS, we may be able to fund:

  • A course of private physiotherapy with a therapist experienced in Parkinson's
  • Hydrotherapy or a pain management programme
  • A TENS machine or other pain relief device recommended by your clinician
  • Workplace or home equipment, such as a supportive chair, sit-stand desk, voice-to-text software or adapted keyboard
  • Daily living aids that help you stay safe and independent

We fund treatment, equipment and support, not general living costs. If Access to Work, your employer, the NHS or your council should provide something within a reasonable time, we'll ask you to try them first. Always get a written quote to include with your application.

Apply for funding Check the requirements

Support and sources

Parkinson's UK

Information and support service

Free helpline 0808 800 0303, Monday to Friday 9am to 6pm and Saturday 10am to 1pm. Also local advisers, groups and an online forum.

parkinsons.org.uk

Cure Parkinson's

Research charity

News about research into treatments that could slow or stop Parkinson's, and ways to take part in studies.

cureparkinsons.org.uk
Sources for this guide

Last reviewed: October 2026.