Pain is a common, often overlooked symptom of Parkinson’s disease (PD). If you live with unaddressed pain, it can significantly impact your quality of life. Tracking, assessing and effectively managing your pain can make it easier to continue doing day-to-day activities. Find out how to begin taking control.

This article is based on Understanding Pain in Parkinson's, a Parkinson’s Foundation Expert Briefing webinar presented by Apurva Zawar, PT, DPT, Board Certified Geriatric Clinical Specialist, University of California, San Francisco volunteer assistant clinical professor and Beyond Rehab founder.

Research shows people living with Parkinson’s experience significantly higher levels of pain compared to people without PD. Pain in PD can make movement difficult and amplify stress, anxiety and depression. One of the best medications for PD symptoms is an active, social lifestyle. But when you feel overwhelmed, you are less likely to exercise, stay mentally active and connect socially. This can create a vicious cycle. Recognizing your pain patterns can help you take control and get back to living well.

Pain is a personal experience. It is important to communicate what you are feeling. Acute pain is often directly connected to an injury, while chronic pain can last three months or more. Use the tips below to track your pain experience a few days before you meet with your Parkinson’s doctor.

Determine whether your pain is linked to Parkinson’s

(Mylius et al., 2021)

If you answer yes to one or more of the below questions, your pain is likely PD-related:

• Has my pain started or become more severe since the onset of PD symptoms?
• Does my pain worsen when rigidity, tremors, or slowness of movements are more intense?
• Is my pain associated with excessive or abnormal movements (choreatic dyskinesia)?
• Does my pain improve when taking PD medications?

Classify your pain

There are three types of Parkinson’s pain:

1. Musculoskeletal and dystonic (nociceptive) pain

   Musculoskeletal aches include muscle tenderness, joint pain, decreased joint mobility and postural changes. Most people report lower limb and low back pain. In early Parkinson’s 34% of people experience musculoskeletal pain. It can impact nearly 50% of people living with advanced Parkinson’s (Valkovic et al., 2015).

   Dystonic pain is tied to abnormal, involuntary cramping movements in PD that can happen when the effect of levodopa medication wears off between doses. Over 10% people experience this type of pain around the time of diagnosis, while 23% of people who have lived longer with Parkinson’s are affected (Valkovic et al., 2015).

2. Neuropathic (radicular) pain can include burning, tingling, numbness and the feeling of being pricked by pins and needles. Nearly 20% of people experience this in the earlier PD stages. As symptoms advance, close to 35% of people feel neuropathic pain (Valkovic et al., 2015).
3. Central (nociplastic) pain is a constant, dull aching pain experienced by nearly 20% of people in early Parkinson’s and 25% of people living with advanced PD (Valkovic et al., 2015).

Rate your pain level

Ask yourself:

• How intense is the pain on a scale of 1 to 10, with 10 being the greatest possible pain?

• How often do you experience pain: occasionally, frequently or constantly?
• What is the level of impact pain had on your quality of life: minimal, moderate or major?

It’s important to note:

• What makes the pain worse or better?
• What does it feel like: achy, electric shock-like, dull?
• Is the pain in one place or does it move around the body?
• When did it start, and is it affected by the timing of PD medications?

Be sure to also list every medication you are taking and how frequently, including any over-the-counter drugs.

The Impact of PD Pain

Unmanaged pain in Parkinson’s can have a major bearing on well-being (Choi et al., 2017). It can occur at any time throughout the course of Parkinson’s, including:

• Pre-motor stages: Pain can begin one to two years before PD-related slowness, stiffness and balance issues (known as movement symptoms).
• Early Parkinson’s: People often report pain as one of their most bothersome non-movement symptoms. Research shows 20% percent of people with Parkinson’s experience chronic pain at the time of diagnosis (Mylius et al., 2021).
• Advanced PD: People living with Parkinson’s for five years or more reported experiencing 35% more pain than people in early stages of PD.

What Causes PD Pain?

Pain affects nearly 80% of people throughout the course of Parkinson’s (Mylius et al., 2021). PD-related pain can stem from many causes, such as:

• Decreased dopamine production. Parkinson’s diminishes this feel-good brain chemical that influences movement, mood and more.
• Dysfunction of pain pathways. Parkinson’s impairs the nerve pathways that control sensation and pain in the brain, brainstem and spinal cord.
• Musculoskeletal pain. People with Parkinson’s often feel aching muscles and joints.
• Altered inflammatory signals. The body sends chemical messages to initiate healing after injury. Parkinson’s can interrupt or change these messages.

Getting Pain Management Right

Relief is often most effective for people who are empowered to take an active, educated role in pain recovery. Parkinson’s pain and other symptoms can change over time. Treatment should be tailored to your needs. Building a team of healthcare professionals well-versed in PD who collaborate in your care can help you address challenges as you face them.

Managing pain often begins with a neurologist or movement disorders specialist, who can work with you to optimize Parkinson’s medication and help you find the right interdisciplinary care. Tell your doctor about any mood changes you are experiencing. Depression and anxiety are common PD symptoms. Untreated, these can intensify other Parkinson's symptoms.

You might receive a referral to a physical or occupational therapist (or both), speech-language pathologist, psychologist, wellness coach or other professional to help you build a pain-management toolbox. Healthy habits, exercise and education are all essential to easing discomfort.

Recovery in Action

Participants in PD PowerUp, a four-week Parkinson’s pain management study funded in 2023 by the Parkinson’s Foundation, reported increased movement and the ability to actively manage their pain symptoms following the program. This program gave them tools to:

• Interpret and understand what causes pain.
• Increase confidence in pain management.
• Gain active coping skills.
• Boost engagement with others.

People who participated decreased dependency on over-the-counter pain medications by 20% and increased use of active coping strategies by 30%.

Tips to Recognize Pain

Look out for these pain triggers:

• Watch your posture: sitting or sleeping in an uncomfortable position can activate pain.
• Notice whether seasonal changes (which can influence hormonal changes) impact how you feel.
• Can your pain be related to stiffness or sedentary activity? Take time to stretch. Try our PD-tailored Fitness Friday: Flex and Flexibility video that you can do from home, at any time.
• If you experience other inflammatory conditions, including age-related stiffness such as osteoarthritis, talk to your healthcare team about ways to address and manage your discomfort.

Learn More

Explore our resources about pain management in Parkinson’s:

• Pain in Parkinson's Disease

• A Beginner's Guide to Managing Pain Through Mindfulness
• Understanding Pain
• PD Health @ Home Fitness Friday exercise videos

Psychosis can be a frightening word. Understanding what it means in Parkinson’s disease (PD) and how a person may experience symptoms can ease the fear and stigma surrounding this medical term. Hallucinations and delusions can be common in PD. Openly discussing these symptoms can help your healthcare team discover the best management strategies. Learn the different ways people experience these symptoms and how to address them.

This article is based on Do you see what I see? Hallucinations and Delusions in Parkinson's, a Parkinson’s Foundation Expert Briefing webinar presented by Megan E. Gomez, PhD, Staff Psychologist, Tibor Rubin VA Medical Center.

Shining a Light on Psychosis

If you live with Parkinson’s, some of your most challenging symptoms might be seemingly invisible to others. Known as non-movement symptoms, these can impact mood, sleep, thinking and more. Some are easier to talk about than others.

Not everyone with PD will have hallucinations or delusions, but up to 50% of people with Parkinson's can experience symptoms over the course of the disease. Studies show up to 90% of people do not proactively talk to their doctor about it, meaning the actual number may be higher.

It’s important to know that you are not alone. If you feel, hear or sense things that aren’t there, you may feel self-conscious, embarrassed or even scared to share your experiences. These feelings may lead to isolation and avoidance of care. While it can take courage to talk about your experience, rely on your doctor, neurologist or movement disorders specialist to be familiar with these symptoms.

In Parkinson’s, your doctor might use the term psychosis to describe anything from visual hallucinations caused by slight misperceptions to complex, detailed delusions: seeing things that aren't there or believing things that are not true. These tricks of the brain can seem like minor inconveniences, but often have a big impact on you and your loved ones. These symptoms can stem from Parkinson’s brain changes, medication, dementia or delirium — sudden hallucinations or delusions that can signal a medication or health issue.

Unaddressed, hallucinations and delusions can reduce quality of life for people with Parkinson's and their care partners. These can cause lack of sleep, increase stress and create fall risks or other safety issues. Symptoms can also increase hospitalization risk, care costs and need for long-term care.

Other medical conditions that can cause psychosis include:

• Bipolar disorder
• Brain tumor
• Depression
• Dementia
• Lupus
• Malignant lung neoplasm
• Multiple sclerosis
• Schizophrenia
• Steroid treatment in autoimmune disorders
• Stroke

Gradual Changes in Perception

Symptoms of Parkinson’s disease psychosis vary in severity. In early PD stages, you may be aware that what you are experiencing is not really there. You might lose that insight as Parkinson’s progresses. This happens slowly and gradually over time.

Psychosis symptoms can include:

• Illusions or misperceptions: Misperceiving what is there — for example, a coat and hat on a rack might appear to be a person or a shadow may appear to be a mouse.
• False sense of presence: The sense that someone is looking over your shoulder, in the room or lying next to you in bed, but when you look, no one is there.
• False sense of something moving past: The awareness of something fleeting past or moving in the periphery, or sense something darting across the floor or someone walking through the hallway.
• Hallucinations and delusions: Seeing or believing things that are not true, which can cause a range of feelings from undisturbed or anxious to agitated or frightened.

Types of Hallucinations

Some hallucinations recur with frequency, while others happen just once. Hallucinations are more common in people with sleep or cognitive problems or depression. While increasing medications can sometimes put people at risk for the onset of hallucinations, most people with Parkinson's will experience hallucinations after 10 years of diagnosis.

Hallucinations are less likely to occur when someone is engaged in an activity. They are more likely to happen when a person has vision problems, is alone or at night. Understanding how people with Parkinson's might experience these can help reduce the stigma.

Types of hallucinations include:

• Visual: Seeing people or animals that are living or deceased.
• Auditory: Hearing things like voices or music.
• Olfactory: Smelling things that aren’t there, such as chemicals burning or gasoline.
• Tactile: Feeling as if something is on or underneath the skin, which might cause scratching.

Visual hallucinations can seem as if you are having a vivid dream, despite knowing you are awake — seeing distorted, cartoon-like strangely colored animals and people, bugs, figures hovering on the ground. People have reported seeing fairies or colonies of tiny people. Some people find these entertaining to watch, while others find it frightening.

Common visual hallucinations for people with PD can include:

• Seeing someone sitting in your home, possibly in your living room or at your dining table. It can range from a friendly presence like a visitor or to the distressing sense of an intruder.
• Some veterans with PD have reported seeing elaborate, detailed military bootcamps outside, with a drill sergeant and service members.
• People in cities and urban areas may see out-of-place wildlife, such as deer or skunks.

Auditory hallucinations can cause distraction or poor sleep. People may think neighbors are doing yard work or having a party in the middle of the night. Sounds may seem to come from the attic, basement or walls.

Understanding Delusions

Delusions can distress the person with Parkinson's and their loved ones, sometimes causing isolation, embarrassment, fear, suspicion or jealousy, or resulting in anger or violence toward a care partner. Delusions can create safety or legal problems. Care partners, who may recognize psychosis symptoms before the person with PD, should share these with their loved one’s doctor.

Though delusions are not reality based, they often seem real to the person experiencing them. These often have common themes, including:

• Persecution: Believing someone is trying to deceive or bring harm. You may suspect a trusted person wants to steal from you or family is plotting against you. Some people suspect their caregiver is trying to poison them and become suspicious of medication or food.
• Jealousy: Believing a spouse or partner is being unfaithful. Othello syndrome is the false certainty of and preoccupation with a partner’s imagined infidelity.
• Reference: Feeling like a song or a TV show is speaking directly to you. This may feel like something you want to act on.

Other forms can include:

• Fregoli delusion: Believing different people are actually a single person changing their appearance or in disguise.
• Cotard’s syndrome: Thinking you are dead, decaying, do not really exist or your blood or internal organs are missing.
• Capgras syndrome: Believing an identical imposter has replaced a friend, spouse, family member or pet.

Delirium

Seek medical attention if you experience a sudden change as they are not typical of Parkinson’s. When hallucinations or delusions begin within hours or days, it can be due to changing, stopping, increasing or decreasing a medication, or can signal another medical issue, such as:

• urinary tract infection or pneumonia
• dehydration
• substance withdrawal
• high or low blood sugar
• low blood pressure
• surgery or hospitalization
• organ failure

Managing the Impact

There are several ways to help a loved one experiencing PD psychosis. Find the best methods that work for you. These techniques can help manage the impact:

• A stable, calm, familiar environment is essential for someone experiencing psychosis.
• Keep a routine.
• Try to keep a well-lit, clutter-free home — this can minimize visual misperception, hallucinations and injuries.
• Use a nightlight in the bedroom. Unfamiliar environments might worsen symptoms.
• Offer reassurance that the person with PD is safe, loved and symptoms are not their fault. This can the reduce fear and shame around hallucinations and delusions.
• During an episode, do not argue or rationalize. Leave the room if necessary.
• Orient your loved one with calendars, photos or messages on post-its.
• Remove items that may cause a safety issue, such as area rugs. Explore our home safety page for more.

Focusing on good sleep habits, getting enough exercise and seeking out stress management strategies are vital for people experiencing hallucinations and delusions and those who care for them. Care partners also need adequate rest and breaks from care to burnout risk.

Your doctor can recommend safe management strategies or adjust your medications. Many antipsychotic medications used to treat psychosis should not be used in PD — they can act on dopamine receptors and worsen Parkinson’s symptoms.

While not for everyone, Pimavanserin (Nuplazid®) is a newer antipsychotic that does not block dopamine. It is approved by the U.S. Food and Drug Administration (FDA) specifically for the treatment of Parkinson's disease psychosis. Other medications considered safe options to treat psychosis in PD include Quetiapine (Seroquel®) and Clozapine (Clozaril®). Learn more about medications used to treat psychosis.

Learn More

Explore our resources about hallucinations and delusions in Parkinson’s:

• Webpage: Hallucinations/Delusions
• Library: Psychosis: A Mind Guide to Parkinson's Disease
• Videos: CareMAP: Managing Advanced Parkinson's

Researchers found changes in molecules in the brain and blood that are associated with Parkinson’s, they also found changes linked to certain symptoms

Two of the most widely recognized hallmarks of Parkinson’s disease (PD) are tremors and slowed movement. However, when these symptoms appear, it means that people with PD have already lost up to 60% of their dopamine neurons. Neurons are nerve cells in the brain that are crucial for maintaining a balanced and functioning nervous system.

Diagnosing and treating Parkinson’s early can fend off severe symptoms for years. Inversely, when a diagnosis is delayed, rapid decline can be more likely to occur. Unfortunately, there are no tools, besides assessing symptoms, to diagnose Parkinson’s or predict the course of the disease. However, a new study in Nature Communications has found evidence of molecular changes in the brain and blood of people with Parkinson’s who experience cognitive and movement complications of PD.

Finding molecular changes in the blood that mirror changes in the brain is essential for developing new minimally invasive tests that can diagnose Parkinson’s, be able to track the course of the disease, and monitor how it is responding to treatment.

Parkinson’s symptoms are primarily caused by the death of dopamine neurons in the brain. Dopamine allows us to regulate motivation, memory, cognitive functions, and motor skills. One critical region in the brain that relies on dopamine for these functions is the striatum, which has two regions that behave differently in Parkinson's:

• The caudate: When dopamine levels drop in this area, it leads to cognitive impairment.
• The putamen: When dopamine levels drop in this area, motor control is impacted.

Both regions are densely populated with the same kinds of neurons. While we know how these areas impact movement and cognition, we still do not understand the molecular mechanisms underlying these distinct responses in the human brain.

To learn more about changes in these brain regions, which are difficult to study as they are deep in the brain, researchers used brain samples from 35 people who died with Parkinson’s and 40 people who died without neurological issues. They looked for changes in RNA (a molecule essential for various biological processes) and identified thousands of RNAs that were different in those with Parkinson’s compared to those who did not have the disease.

Study Findings

1. RNA changes in the brain: Many of these RNA changes were linked to the function of the synapse, the special connection between nerve cells that allow them to communicate with each other. Researchers found decreases in RNAs involved in dopamine neuron dysfunction and death; an increase in RNAs involved in inflammation and immune hyperactivation; and an increase in RNAs involved in stress response.

2. Mirroring patterns in the blood: To compare whether the changes they observed in the brain were mirrored in blood samples, the researchers accessed samples from the Parkinson’s Progression Markers Initiative (PPMI), which has collected blood from people who do and do not have Parkinson’s. They found that the RNA levels in the brain were altered in the same direction in the blood.

3. Changes associated with cognitive impairment: The researchers found 57 RNAs in the caudate that were significantly altered in donors that had been diagnosed with Parkinson’s disease dementia. When researchers looked at the differences in RNAs in the blood of people with PD vs. healthy controls, they found a few RNAs that were altered in people with PD.
4. Changes associated with movement symptoms: The researchers found 18 RNAs in the putamen that were significantly altered in donors who experienced levodopa-induced dyskinesia. When researchers looked at differences in RNAs in the blood of people with PD vs. healthy controls, they found no significant differences.
5. Differential patterns depending on age at PD onset: The researchers also found differences between the brains of people who were diagnosed with Parkinson’s before and after the age of 55 — those who were diagnosed earlier showed fewer molecular changes than those who were diagnosed later. Similar results were found in blood.

Study Highlights

• People with Parkinson’s have unique changes in RNA molecules in brain regions that rely on dopamine for regulating motivation, memory, cognitive functions, and motor skills.
• Similar RNA changes were also observed in blood samples of people living with Parkinson’s.
• Patterns of RNA changes were associated with certain symptoms (e.g., cognitive decline, motor complications) or disease features (e.g., early vs. late onset).

What does this mean?

Today, only invasive tests can track molecular changes in the brains of people with Parkinson’s. This study has found that molecular changes that happen in the brain can also be found in the blood. In the near future, this information can be leveraged to develop minimally invasive blood tests that could be used to help confirm a Parkinson’s diagnosis, track disease progression, and evaluate how the disease is responding to treatment. However, more studies are needed before these findings can be used as a clinical tool.

What do these findings mean to the people with PD right now?

People with Parkinson’s symptoms should talk to their doctor about screening.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and the topics in this article through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.

• Getting Diagnosed
• Can We Put the Brakes on Parkinson’s Progression?
• A New Test Could Detect Parkinson’s Before Symptoms Appear
• Join A Study