In early April, the Davis Phinney Foundation offered a webinar on pain and Parkinson’s disease (PD), featuring Dr. Janis Miyasaki. She discussed how common pain can be in those with PD and the different types of pain that may be experienced; what can cause pain in early stage PD, how this may change as the disease progresses, and how pain impacts mental health; treatment options; and other steps you can take to manage pain in PD. There was also an extensive Question and Answer session. We at Stanford Parkinson’s Community Outreach listened to the webinar and are sharing our notes.
This webinar was recorded and can be viewed here.
If you have questions about the webinar, you can contact the Davis Phinney Foundation at 866-358-0285 or via email: firstname.lastname@example.org.
Now… on to our notes from the webinar.
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Pain and Parkinson’s – Webinar notes
Presented by the Davis Phinney Foundation
April 6, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach
Dr. Janis Miyasaki is the Director of the Parkinson and Movement Disorder Program at the University of Alberta, Canada. She helped develop the first neurologist-led palliative care program in the world. In this webinar, she explained that pain is a very personal experience that varies greatly between individuals. What one person calls significant, debilitating pain, another person might call a minor twinge or ache that doesn’t alter their daily habits. Depending on how you define pain, the number of people with PD who experience it varies widely.
What types of pain do people with PD experience?
People with PD experience similar types of pain as the general populace. Pain classification is broken down into these categories:
- Musculoskeletal pain: Particularly common in those of us over 40, this refers to pain in the muscles and joints, whether due to old injuries or arthritis, among other causes. Movement tends to improve this type of pain; because those with PD tend not to move as much, this type of pain can be exacerbated by PD.
- Neuropathic pain: Damage to the sensory system impairs the sensations being transmitted back to the brain. Sometimes this causes numbness, but sometimes it causes pain. In this case, the brain is perceiving pain or discomfort due to the damage or disease affecting the nerves. This type of pain varies widely, but may be felt as sharp, shooting, burning, tingling like “pins and needles,” creeping, or stabbing pain.
- Pain related to treatment: Some people with PD experience pain when their medications are wearing off or kicking in. This transitional period sometimes triggers dystonia, or abnormal contractions of the muscles, which can be painful.
Chronic or recurrent pain can often get in the way of exercise, which we know is so important for those with PD. For those who have been sedentary for years or decades, and are trying to increase their activity, it can be challenging to get used to the pain that often comes with becoming more active.
Neuropathic pain tends to be constant all day, or may be worse when resting, whereas musculoskeletal pain often comes and goes depending on activity and fatigue.
Dr. Miyasaki noted that most of her patients with PD will exercise diligently if she tells them to. Just like any athlete starting out, you need to start gradually. A good rule of thumb is to do a moderate amount of exercise for 35 minutes, 5 times a week. Moderate exercise means being slightly short of breath while trying to keep up a conversation during your exercise.
As your endurance improves in terms of muscular strength and cardiovascular fitness, it will take more effort to get to that point of being slightly short of breath. For some patients, taking medications before exercise can be helpful, to make sure they feel “on” and can move as well as possible. For those who have musculoskeletal pain, try taking some ibuprofen or acetaminophen about an hour ahead of time, to help with discomfort.
For those who are experiencing a lot of pain, that can be a sign that something is wrong! Maybe your form isn’t correct, or maybe you are pushing too hard. It is also possible you have an injury or other unrelated medical issue. Don’t discount pain entirely; it is always possible there is something else going on that needs to be ruled out – you can get other illnesses besides PD! Have a good relationship with your primary care doctor and consult them as needed.
Treatment of pain
Non-steroidal anti-inflammatory drugs (often called NSAIDs) are often taken over-the-counter to treat pain, fever, and inflammation. These include medications like Advil (ibuprofen), Aleve (naproxen), Aspirin (acetylsalicylic acid) and others. NSAIDs can be hard on the stomach, with potential to cause peptic ulcer disease or bleeding. Taking them can be fine in small amounts, but there are safer options.
Tylenol (acetaminophen) is an important mainstay of pain management, often considered the first step in the “pain ladder.” There is nothing intrinsic about PD that changes how pain is treated; for those who tolerate acetaminophen well, it is a good medication to try for pain in moderation.
Editor’s note – Make sure not to exceed the maximum recommended daily dose of acetaminophen (Tylenol) which is 4000 milligrams (mg) per day, due to the risk of liver damage. Check the dosage on the bottle and be aware that many over-the-counter medications include acetaminophen, and you need to take that into account to avoid taking too much overall. Some of the many over-the-counter drugs that often contain acetaminophen as one of the active ingredients include Nyquil and Dayquil, Mucinex, Robitussin, Dimetapp, Excedrin, Sudafed, and Theraflu, among others. Check the active ingredients on the label or ask the pharmacist if you aren’t sure.
Physical methods such as cold therapy or heat therapy can also be very beneficial but must be used cautiously due to the risk of injury; if someone is immobile and cannot maneuver themselves off the ice pack or heating pad, then they need to be carefully supervised to ensure safety.
For individuals who experience painful dystonia – abnormal muscle contractions, usually in the hand or foot – when their medications are kicking in or wearing off, sometimes decreasing the overall amount of PD medication they are taking, if it has been increased significantly over time, can actually help decrease the painful dystonia by providing a smoother “on” period without as much fluctuation in doses.
If dystonia is prolonged, severe, and disabling, but someone still responds well to levodopa, then surgery such as Deep Brain Stimulation or an intestinal levodopa pump (Duopa) may provide smoother therapy without the painful wearing-off or kicking in dystonia. In some cases, injections of botulinum toxin (Botox) can provide temporary relief, but must be repeated every 3 months to main effectiveness.
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Question and Answer Session
Q: How does neuropathic pain differ from overdoing it in exercise, and how can I tell the difference?
A: Neuropathic pain tends to occur spontaneously and be consistent throughout the day, as opposed to musculoskeletal pain which tends to come and go depending on time of day or activity. When you know that you’ve increased your activity, chances are, the pain is associated with your activity. A physical therapist can be very helpful in helping to sort out injury from normal pain.
Q: Is my dystonia caused by PD?
A: There are other causes of dystonia as well. Does it occur relative to your PD meds? Then you can say that it may be related to your PD and its treatment. If we stop the levodopa, you might not have the dystonia, but you also might not feel “on,” ever. It is due to progression of the illness. As time goes on, the brain is less able to handle the levodopa consistently, causing motor fluctuations, dyskinesias, sometimes dystonia. It is important to get your symptoms evaluated by a neurologist to determine if there might be another cause of the dystonia, and to learn about treatment options.
Q: I often experience leg cramping at night – is this related to PD?
A: It may be. Cramping, pain, stiffness, and tremor sometimes reemerge overnight. See if a dose of levodopa taken during the night (put it at your bedside so it’s accessible). If that is not helpful, see your neurologist or primary care doctor to rule out other possible causes of nighttime leg cramps.
Q: I started using magnesium for muscle cramping in my legs and it has been helpful. Is this something you recommend for your patients?
A: It’s important to go on a case-by-case basis and speak with your doctor before trying something new. For some people, magnesium may be helpful. There are a lot of different causes of leg cramps so it’s important to be evaluated.
Q: Is there any link between PD and pinched nerves?
A: No, there is no connection that we know of between PD and pinched nerves (herniated discs). Both tend to occur as we get older.
Q: How does pain affect mental well-being?
A: People who are already anxious and depressed tend to rate their pain higher than someone who is not anxious and depressed. Pain that is unrelenting is often also a cause of anxiety and depression. If someone has pre-existing depression, it is very important to treat that as well.
People are sometimes reluctant to take medication for mental health issues; many of us grew up in the era of “pull yourself up by your bootstraps, keep a stiff upper lip.” But in PD, depression and anxiety are associated with real neurochemical changes in the brain. For those with PD, treatment for anxiety or depression is like taking a vitamin – replacing what has been lost.
Q: What is your opinion of cannabidiol (CBD)?
A: A substance found within cannabis (marijuana), CBD is sometimes used medicinally as it does not produce a “high” like THC, another compound in marijuana. CBD is commonly used and legal now in Canada. Studies have found that it is less effective than antidepressants such as duloxetine, but it may be slightly more effective than acetaminophen or ibuprofen.
People are attracted to it because it is perceived as “natural,” but keep in mind that lots of the substances that we use from the pharmacy originated from the natural environment – Aspirin is derived from wintergreen, for example.
There are possible side effects with CBD, such as hyperemesis syndrome (uncontrolled vomiting), lack of mental clarity, apathy, and cognitive changes. CBD also is not regulated – you don’t necessarily know what you’re getting, in terms of purity. It often has THC even if it says pure CBD, which can cause psychiatric effects like hallucinations that are very concerning in PD.
Q: Does deep brain stimulation (DBS) for PD help with pain?
A: If your pain is related to dystonia when your medications are kicking in or wearing off, then DBS may be helpful since it provides a steady state of therapy and oral medications can often be somewhat reduced.
Q: Can you elaborate on the “pain ladder” you mentioned?
A: We always want to start with the least risky and invasive methods to reduce pain. Cold or heat therapy can be beneficial, as mentioned previously. Stretching can be very helpful as well, though depending on the motivation and cognitive abilities of the individual, they may need help from a care partner to encourage and assist with stretching.
Next on the ladder are acetaminophen and ibuprofen. After that comes stronger NSAIDs like naproxen, then antidepressants or medications that might have antidepressant abilities, like Tramadol or duloxetine. Next come anti-epileptic medications that have been found to help with pain, such as gabapentin and pregabalin; these are higher up on the ladder because they often cause sedation or increased risk of falls in those with PD. At the top of the ladder are opioids, if your pain has not been relieved by these previous steps. These have the potential to cause a lot of side effects. Sometimes those with PD can experience relief even with doses that are very small. Palliative care doctors are often accustomed to treating cancer patients who may need much higher doses than those with neurodegenerative illness; in some cases, a fraction of a small dose is enough to help manage pain in those with PD.
Q: What is neuro-palliative care?
A: Palliative care is a multidisciplinary branch of medicine that aims to improve or maintain quality of life and decrease suffering for those who have serious illness. Neuro-palliative care integrates this approach with neurologic care for those in the later stages of degenerative neurologic diseases like PD. The team should include a neurologist with palliative care training, or a neurologist/palliative care specialist dyad working together.
In the later stages of PD, the individual often needs a walker or wheelchair and has significant swallowing problems, and can benefit from visiting a neuro-palliative care clinic in addition to their existing care team.
Dr. Miyasaki’s clinic tries to help people who have unaddressed symptoms, couples who have caregiver burnout, and pain as a significant problem. For ongoing needs, it’s really hard to access ongoing neuro-palliative care; it’s not widely available among other medical centers. Hopefully that will change in the future!
Q: Is shortness of breath a symptom of PD?
A: It can be. Once again, it is important for the primary care doctor to examine you and rule out any cardiac or respiratory issues that could be happening. If everything else is ruled out, then it may be your PD, and is often related to medication wearing-off anxiety. If that is the case, consider whether there are any cognitive issues, and also if the anxiety is being managed. Sometimes getting the anxiety under better control can really improve the shortness of breath.
Q: When should I consider DBS surgery?
A: Probably sooner than you think! It’s not a last resort. DBS doesn’t improve symptoms beyond your best “on” with levodopa. That’s why we want to make sure patients have a response to levodopa before surgery. DBS can provide you with less “off” time and often a reduction in oral medications. If you have dyskinesias or other side effects from levodopa, then being able to treat with DBS and decrease medication can be a major benefit.
To be a surgical candidate, ideally you’re still having some good response to levodopa and are still cognitively doing well, still active physically. Many people wait until they’re in their 70s and may not have as much benefit from DBS, and more likely to have surgical complications and cognitive decline.
Q: What are some concrete things people can do to help with pain on a daily basis?
A: As Buddhists would say, living is a painful condition. We get to decide what we will do to try to mitigate it.
- Take your medications regularly.
- Try to have a daily bowel movement! Your medications will work better and you’ll feel better overall. Increasing your hydration, fiber, and physical activity can help keep your bowels moving regularly.
- Address any mental health issues. Sleep, pain, movement, and apathy are all exacerbated by anxiety and depression.
- Don’t blame everything on your PD; keep in mind that you may have other issues at play that need to be managed too.