September webinar

Key Takeaways

  • Parkinson’s-related pain is common and can appear years before more familiar symptoms like tremor or stiffness. Most people living with Parkinson’s will experience pain at some point.
  • Pain shows up in different forms, from dystonia-related cramping to nerve pain to a general heightened sensitivity. Understanding and describing your symptoms can help you and your health care team identify possible causes and treatment options.
  • There is no single solution for managing pain. Exercise, massage, medication timing adjustments, and targeted treatments like Botox injections for dystonia may all play a role.
  • Movement disorders neurologist Dr. Veronica Bruno and lived experience speaker D.A. Dirks answered questions from the community about morning stiffness, cannabis, and whether pain can appear before other Parkinson’s symptoms.

For a long time, even some doctors believed Parkinson’s simply didn’t cause pain – if something hurt, it had to be something else: arthritis, an old injury, getting older. But as Dr. Veronica Bruno, a movement disorders neurologist and clinician-scientist at the University of Calgary, and D.A. Dirks, PhD, a lived experience speaker living with Parkinson’s, shared during a recent Parkinson Canada webcast on pain and dystonia, that assumption doesn’t hold up. Around 20% of people already have Parkinson’s-related pain by the time they’re diagnosed, and as the condition progresses, roughly 80% will experience it at some point.

In this piece, we explore the different forms Parkinson’s-related pain can take, what actually helps, and three questions from the community that Dr. Bruno and D.A. Dirks answered live – on morning stiffness, cannabis, and whether pain can show up before other symptoms.

Pain doesn’t come in just one form

Dr. Bruno explained that Parkinson’s-related pain can show up in different ways and described three broad categories clinicians use:

Muscle and joint pain (nociceptive pain), has a mechanical cause, such as dystonia (sustained, involuntary muscle contractions) or arthritis worsened by rigidity.

Nerve pain (neuropathic pain), often occurs due to nerves compressed by years of stiff posturing, which may feel like tingling, pins and needles, burning, or electric shocks.

Central pain (nociplastic pain), is the hardest to describe: a diffuse, hard-to-pin-down discomfort that doesn’t map neatly onto any one body part.

Understanding what the pain feels like can help your health care team identify possible causes and treatment options.

A few patterns come up often enough that Dr. Bruno called them out specifically. A cramp that wakes someone at night – often mistaken for a simple charley horse – can signal that Parkinson’s medication has worn off overnight. “Coat hanger” pain, felt across the neck and shoulders when moving from lying to standing, is often tied to a drop in blood pressure rather than the neck itself. And shoulder pain on the side where symptoms first appeared is frequently mistaken for a rotator cuff problem or menopause – Dr. Bruno cautioned against shoulder surgery without first ruling out Parkinson’s, since surgery won’t fix a problem that was never structural to begin with.

Dystonia and dyskinesia are often confused, but they point to opposite ends of the medication cycle:

Dystonia is a muscle cramp or sustained muscle contraction that causes a body part to twist or hold a position, such as curled toes or a turned neck. It often happens when medication is at its lowest.

Dyskinesia refers to involuntary, fidgety movements that shift and change. It is more likely to occur when medication is working at its peak.

Some people experience both.

Finding what actually helps

Both speakers were clear that no single fix works for everyone.

Staying active is one of the most important ways to manage Parkinson’s-related pain. Exercise can help reduce stiffness and may make pain easier to manage. At the same time, pain can make it harder to stay active, creating a cycle that’s difficult to break. Dr. Bruno encouraged people to work with their healthcare team to find ways to stay active safely, rather than waiting for pain to improve on its own. Sleep can have a similar effect. Pain can make it harder to sleep, and poor sleep can make pain feel worse.

Several non-medication approaches may help. Massage therapy and physiotherapy came up repeatedly as ways to release the muscle tightness that builds up around a painful area. Occupational therapy can help identify which specific movements are triggering pain and how to work around them. Cognitive behavioural therapy was also mentioned, not because pain is psychological, but because pain, anxiety, and low mood tend to reinforce one another.

Medical treatments may also help. For some people, adjusting the timing of Parkinson’s medication can reduce pain that occurs overnight or when medication is wearing off. Botox injections may help some people with dystonia-related pain. Dr. Bruno noted that research conducted in Calgary (which D.A. took part in!) helped establish this as a treatment option, and it is now used by many people living with Parkinson’s.

Additional options exist for nerve-related and musculoskeletal pain, but the specifics are worth a direct conversation with your own care team rather than a one-size-fits-all answer here.

A note on red flags: Dr. Bruno emphasized that not all pain is related to Parkinson’s. Seek medical attention if pain:

  • Starts suddenly
  • Happens after a fall or injury
  • Is accompanied by redness, swelling, or fever
  • Occurs in the chest
  • Comes with new weakness or numbness

Don’t assume these symptoms are simply part of Parkinson’s.

D.A. Dirks, who lives with Parkinson’s and manages dystonia-related pain themself, shared what’s helped them personally:

  • Massage and a portable infrared sauna: for temporary relief of muscle tightness.
  • Staying active: including a twice-weekly outdoor workout group that doesn’t leave anyone behind, regardless of pace.
  • Staying socially connected: concerts, comedy shows, book talks, and dancing.
  • A spiritual practice: a Buddhist practice they’ve kept up since 2020, alongside their teacher and their sangha, or community.

Cannabis and their first experience with acupuncture didn’t provide much relief, although they’re trying acupuncture again with a different practitioner. Their experience reflects a common theme throughout the webcast: what works for one person may not work for another, and finding the right combination of strategies often takes time.

D.A. also highlighted the limited research on hormones and Parkinson’s, a topic they continue to explore in collaboration with Dr. Bruno.

Questions from the community

The webcast’s Q&A brought in questions from people living with Parkinson’s and the people caring for them, answered live by Dr. Bruno and D.A. Dirks. [Watch the full video] or [listen to the podcast] if you’d like to hear them all. In the meantime, here are three that might resonate with you:

“When I wake up in the morning, I can sometimes barely move because of cramps and pain. Is there anything I can do before bed to avoid experiencing pain in the mornings?”

Morning stiffness and cramping often means Parkinson’s medication has worn off overnight, and dopamine levels drop to their lowest by early morning. Dr. Bruno explained this is common, and that adjusting the evening medication schedule can help for some people – this is a conversation to have directly with your neurologist, since the right approach varies from person to person.

“Is it normal for pain to be a precursor to other Parkinson’s symptoms?”

Yes. Around 20% of people already have some Parkinson’s-related pain at the time of diagnosis, and it can appear years before more recognizable symptoms like tremor or stiffness.1 Foot dystonia and shoulder pain are two common early examples, and both are frequently misdiagnosed at first – as a sports injury or frozen shoulder, for instance – until the underlying pattern is recognized.

“Are cannabis products recommended to help with pain? Are some better than others?”

Cannabis remains understudied for Parkinson’s pain specifically. Dr. Bruno’s research team recently completed a study on how people living with Parkinson’s are using cannabis – most commonly hoping it will help with pain, anxiety, or sleep, with mixed results reported. D.A.’s own take was blunt: “I’d lick a snake if somebody said it might help me” – a fair summary of how far people are willing to go for relief. Dr. Bruno’s advice: if you find something that helps without side effects, that’s reasonable, but keep your doctor informed that you’re using it.

The discussion also covered topics such as wearable technology, footwear for foot dystonia, understanding the difference between dystonia and dyskinesia, and managing nighttime pain.

Watch the full webcast below or listen to the podcast to explore these questions in more detail.

Reference

Andersen MS, Oppel LM, Modrau B, Jensen K and Gazerani P (2026) Pain and sensory abnormalities in prodromal and early Parkinson’s disease: mechanisms, assessment, and clinical implications. Front. Pain Res. 7:1888196. doi: 10.3389/fpain.2026.1888196