Is pain a symptom of Parkinson’s? If it is, is it a motor symptom or a non-motor symptom?
Do the motor symptoms of PD directly or indirectly cause pain?
Or is pain a symptom of something else? Arthritis? Aging?
Or is it a result of lack of exercise? Over exercise? Improper exercise form? Improper exercise instruction? Some combination of factors?
Does pain contribute to the severity of other Parkinson’s symptoms?
If you’re looking for a conclusive answer, I’ll save you some time…there is no single answer, because pain, like Parkinson’s, is as unique to an individual as a fingerprint.
Doctors know that people with Parkinson’s experience pain. Estimates of people with PD who experience pain range from between 40% and 85% in various studies of the topic. This significant disparity is most likely due to variances of what qualifies as pain, and how questions about pain experience are worded, as pain can only be reported and measured by the individual experiencing it.
Without a doubt, pain is a frequent complaint of people with PD. A recent study asked people with PD (early stage, < 6 years) to rank their 3 most troublesome symptoms. Overall, pain was the 4th most troublesome symptom, and considered the most significant symptom by 10%.
Ranking of the ten most bothersome PD-related symptoms (Source):
| Rank | Symptom/condition | First choice (%) | Second choice (%) | Third choice (%) |
|---|---|---|---|---|
| 1 | Slowness | 33 | 5 | 13 |
| 2 | Tremor | 30 | 9 | 4 |
| 3 | Stiffness | 6 | 26 | 11 |
| 4 | Pain | 10 | 10 | 5 |
| 5 | Loss of smell/taste | 3 | 10 | 3 |
| 6 | Mood | 4 | 6 | 4 |
| 7 | Handwriting | 2 | 3 | 6 |
| 8 | Bowel problem | 2 | 3 | 5 |
| 9 | Sleep | 2 | 4 | 1 |
| 10 | Appetite/weight | 0 | 3 | 8 |
Numerous studies and articles have attempted to categorize and understand the pain felt by people with Parkinson’s. Generally speaking, these areas of pain include:
- Musculoskeletal Pain – Sore or aching muscles, either in particular areas of the body, or widespread.
- Joint Pain – Sometimes lumped in with musculoskeletal pain, joint pain is often associated with arthritis.
- Lower Back Pain – Not PD specific, but extremely common, and can be further aggravated by stooped posture.
- Muscle cramps & Restless Leg Syndrome (RLS) – RLS is associated with low dopamine, and is often a precursor to PD.
- Peripheral Neuropathy – Numbness or tingling in the extremities.
- Pain caused by dystonia – Involuntary muscle cramping that some experience when PD medication is “off”.
- Pain caused by dyskinesia – Involuntary movement that some experienced when PD medication is “on”.
- Central Parkinson’s Pain – This is pain caused by neurodegeneration where the brain is not processing pain signals correctly. Like musculoskeletal pain, it can be focused or widespread, but is generally more intense.
- Abdominal Pain – This is one that is not frequently mentioned, but the Michael J. Fox Foundation article linked below raises a good point, that with constipation being common with PD, this can also be a cause of pain in people with PD.
Below, I have linked to several articles with helpful advice and further descriptions of areas of Parkinson’s pain:
Compared to the normal population, pain is felt at a higher rate in Parkinson's. However, compared to the normal population, Parkinson's patients receive less treatment for pain!
Let's go over 5 main types of Parkinson’s pain and some of the treatment options that can help (it doesn't always mean medication!)
Now, let’s step back from Parkinson’s for a moment…
Researchers from the USA Centers for Disease Control and Prevention (CDC), define chronic pain as pain that limits at least one major life activity, and recently reported that approximately 20 percent of all U.S. adults had chronic pain in 2016. (European studies report similar percentages.)
20% of all adults experiencing chronic pain is rather significant. That is 1 out of 5 people!
As one would expect, there is a higher prevalence of chronic pain associated with advancing age. For adults 45 and older, 28% experience chronic pain. (Interestingly, chronic pain percentages are almost the same in both the 45-64 and 65-84 age groups.)
The PD studies lack a common diagnostic criteria for pain, but it is probably safe to assume that there is a higher prevalence of chronic pain associated with PD. However, if 28% of adults 45 and older have chronic pain, then there is a significant possibility (at least 1 in 3, if not higher) that an individual with PD who experiences chronic pain is experiencing pain unrelated to PD.
I would also propose that if 28% percent of the general population 45+ experiences chronic pain, there is a much larger percentage that experiences some regular pain or discomfort, that is not necessarily chronic. (Next time you’re out with friends who do not have PD, ask them if they have any pain. I challenge you to find a group where less than half have some type of pain issue.) People with PD may interpret minor pain or discomfort, when combined with other PD motor symptoms, as more significant activity limiting chronic pain.
I’m not a medical professional, and this is not medical advice. But, I find one of the statements from one of the articles referenced above, particularly thought provoking:
Compared to the normal population, pain is felt at a higher rate in Parkinson’s. However, compared to the normal population, Parkinson’s patients receive less treatment for pain!
The issue is that there is a tendency to accept pain as a “fact of life” with Parkinson’s. Of course I have pain, I have Parkinson’s. It’s one of the symptoms.
The problem is, pain can make other Parkinson’s symptoms worse!
I realized this one day when I was out of town for a conference in San Francisco (one of my favorite cities to walk around). I left my hotel room and I just couldn’t find my normal stride. I went back to my room and contemplated taking another carbidopa/levodopa pill early, but instead decided on Aleve, because while there wasn’t pain, there was a dull achy feeling in my legs. 15-20 minutes later, my gait was closer too normal. (Or at least what I expected, not necessarily normal, but “my normal”.)
I’ve observed a few other ways that pain seems to interact with PD…
- If you have neck pain, this tends to be more of an issue when turning, and combined with PD may contribute to balance instability.
- Lower back pain is also going to add to balance issues when turning, or getting out of a chair. It’s also going to make you keep your body even more rigid in an attempt to minimize pain.
- Any type of pain is going to make you more cautious and move that body part even more slowly.
- And that vacant expression in your face? Are you perhaps a little distracted by pain?
It’s become obvious (painfully obvious?) to me that pain contributes to Parkinson’s slowness, rigidity/stiffness, balance/stability, facial expression and even tremor.
So, what’s the answer? Pain pills are obviously not a great solution.
This is a topic to discuss with your care team, and perhaps a reason to expand your care team. Pain is important enough that it needs professional advice that is tailored for your specific condition.
In most likelihood, specific exercise and/or physical therapy will be recommended. And maybe it’s time to get a new mattress, or reevaluate your sleeping position.
Pain can make other Parkinson’s symptoms worse. If pain is affecting your quality of life, don’t just accept it, address it. A pain-free existence may be unrealistic, but any improvements in your personal pain profile can have a significant impact on quality of life.
Additional recommended reading:
