Pain: An Invisible Symptom of Parkinson's

When thinking about PD, some of the symptoms that come to mind the quickest are visible issues, like tremor, shuffling gait, speech difficulties, or rigidity. However, pain is another common symptom that is often forgotten about or underestimated because it’s not obviously seen. Pain is an invisible symptom, meaning that those around an individual in pain may not be able to notice their discomfort at first glance. Despite potentially being talked about less, pain with PD is incredibly common and life-impacting.

How common is pain with PD?

Some estimates have suggested that over 75% of individuals with PD experience pain of some kind.¹ To find out more about life with PD, we recently conducted our Parkinson’s Disease In America survey, which featured responses from nearly 1,200 individuals with PD. The results from our survey matched those reported by other large outlets, with about 79% of respondents saying that they experience some sort of pain alongside their PD.

Of this 79%, about 10% said they had been very much in pain over the past seven days, and another 22% said that they had been in quite a bit of pain over the same time period. The remaining 47% respondents reported that over the last seven days they were somewhat or a little bit in pain. Only 21% of survey participants said that they had experienced no pain over the past week. From these results alone, it’s obvious that pain is a common, and real, symptom of PD, and those who experience it are not alone.

Of those who had experienced pain, 30% said they would rate their pain as a 4-5 on a scale of 1-10 (with 10 being the worst pain possible). Another 52% said that their pain was a 6-8 in severity. On the more extreme ends of the spectrum, only 14% said that they would rate their pain as a 3 or below, while 5% said their pain was a 9-10 in severity. These results show that although pain can be incredibly common, each individual can experience it quite differently.

Where is PD pain felt?

As mentioned, PD pain can present differently from person to person, so there is no one “normal” way to experience PD pain. With that said, there are some common themes in the pain felt by individuals with PD, including, but not limited to:

• Musculoskeletal pain: Pain in the muscles or bones that may be the result of changes in posture, falls, and decreased mobility. This type of pain may especially be felt in the lower back.
• Nerve or root pain: Pain that is felt around nerves. Common words used to describe nerve or root pain include tingling, burning, numbness, or pins and needles. It can be caused by nerve compression, like sciatica pain felt down one leg, or it can be due to other accompanying issues like diabetes or deficiencies in vitamins like vitamin B. Nerve pain may also affect the peripheral nerves, which are the nerves that impact the hands and feet.
• Dystonia-related pain: Involuntary and prolonged muscle contraction (dystonia) can accompany PD and cause pain. This type of pain may be felt as a result of involuntary twisting and writhing movements, and can impact the trunk, jaw, arms, legs, face, or even the throat muscles. An example of dystonia-related pain is the prolonged curling of the toes that can eventually become quite painful.
• Akathisia-related pain: Restlessness (sometimes called akathisia when severe) may impact an individual’s ability to sit still or sleep and may have accompanying pain, especially in the legs. Akathisia may also have accompanying anxiety or other mental health issues, which may impact existing pain from other sources.
• Primary or central pain: In some cases, the brain may send pain signals throughout the body. This pain, called central or primary pain, is not well understood, and can feel like a sharp burst of pain or a stabbing sensation. It can impact the entire body or smaller regions.^1-3

How to discuss pain management with your doctor

Discussing chronic pain with your healthcare provider may be a sensitive topic, due to the invisibility of pain as a symptom, and potentially due to the current opioid crisis in America. Although it may be an uncomfortable conversation to have, talking with your doctor about what you’re going through, and healthy ways to manage it, can be critical to your overall wellbeing. You may want to ask your doctor about pain medications that could provide you with some relief. It’s important to remember that it’s not unreasonable to inquire about pain medications to find out what options might be appropriate for you. In fact, over 50% of respondents to our Parkinson’s Disease In America survey reported that they currently use some form of pain medication (including over-the-counter drugs), and another 29% said they have used these medications in the past.

If you are not interested in medication and are curious about other methods of pain management, you can also talk with your doctor about alternative pain relief options. These may include supplements, vitamins, exercise routines, acupuncture, physical therapy, and more.² No matter what kind of alternative treatment you’re interested in though, it’s important to talk with your doctor before trying anything on your own. Especially supplements that may impact other traditional PD medications.

Even when it comes to visiting other professionals, such as acupuncturists or exercise groups, it may be a good idea to check in with your healthcare team first. Your doctor may be able to help you determine what professionals in your area are the most reputable, and who might provide you with relief. Your physician may also have other suggestions for alternative pain relief, or a combination of traditional and alternative pain relief methods, that you hadn’t previously considered.