Revisiting Pain in PD ….the 50 shades of Pain Experienced by Parkinson’s patients: By Dr. De Leon

Whenever you get Pain in your life, think about the full form of PAIN! –Positive Attitude In Negative Situations!”-unknown

Lately, I have been reading a lot about the frustration experienced by so many of us that have Parkinson’s disease due to the fact that pain syndromes in Parkinson’s is still very poorly understood by most of us even those of us who are ” experts” in the field.  The reason is not only because pain is such a complex syndrome produced by different sources even in the same patient which is susceptible to change as the disease progresses but because it is such a subjective thing –difficult to describe. Unless you hit the right description words, unfortunately, your doctor may not clue in to where the problem lies;

Hence, I am writing this to help you focus your physician’s attention in the right direction to accurately diagnose your pain syndromes. Ironically, as much pain as we seem to be in most of the etiologies have treatable solutions.

The most difficult to treat is ‘central pain’ but even this if caught early can be treated successfully without having to resort to use of narcotics. It is extremely important to address pain whatever the cause at the earliest sign of it because this can be a huge source of disability interfering with an individual’s day-to-day activities and overall quality of life. Pain can permeate and affect all areas of one’s social, emotional, and physical life. This can lead to not only overall healthcare costs but undue stress from multiple testing and general malaise that can lead to severe depression and hopelessness which turns into a catch 22 since scientists have shown depression itself can make the pain syndromes worst. This involves 30- 40% of PD patients. How a person view pain and reacts to it is extremely important and will color the behavior around it. For instance if you tend to focus on the pain it will worsen rather than if you try to minimize or think positively that it can and will go away!

About a decade ago if someone had asked me if pain was part of the  initial Parkinson’s presentation, I would have answered with a resounding NO! Dopamine cells are not involved in pain modulation, yet here I am as many of you! Years of seeing and treating patients had taught me this but in an instant my own illness taught me otherwise!

However,  there are several different pain sources in Parkinson’s, in fact about 85% of PD patients complain of pain usually as the disease advances.

But, in rare instances some people like myself (probably less than 10% although not found an exact number) have pain as an initial complaint or PD symptom!! This can be the FIRST symptom of disease. In my personal experience, this appears to be more common in YOPD. This type of pain associated intrinsically with PD ( like tremors, loss of smell, bradykenesia, etc.) is known as a “central pain” originating in the brain. This particular pain is typically described as a generalized -all over the body dull aching deep pain.

Other Common pain types in Parkinson’s disease patients are:

Musculoskeletal pain– usually due to poor posture (stooped forward), areas affected usually are large joint areas -hips, neck, back, shoulders, wrists. (throbbing, aching, sharp). Tender to touch, hurts to move but usually gets better after it starts moving.

Nerve root pain– usually related to neck and back pain, carpal tunnel. There appears to be an increase rate of back and neck herniated discs due to PD (presumably due to rigidity of axial muscles causing discs to bulge out) just like the same stiffness and rigidity can result in a dislocated shoulder. This is usually a sharp shooting, electrical –shock- like, burning, tingling, touch sensitivity (feels different to touch can be very painful or numb) and numbness. Usually triggered by particular position and relieved when resting most of the time).

Dystonia– one of which is “wearing off” dystonia. –twisting, cramping, or posturing of affected body part.

Restleness (akathisia)- extreme inner restlessness, unable to sit still, have to keep moving or pacing

In order to help your doctor determine cause of pain keep a diary.

Tell him/ her where the pain is?

What does pain feel like?

Does it go anywhere (radiate)?

When does it start?

Is it in the am or pm?

Is it related to medication intake? Or time they wear off?

Any activity brings on the pain?

How long it lasts? Is it continuous?

What makes it better? (Specifically if Parkinson’s medications make it better).

Remember the key to a good outcome in treating your pain before you go bonkers is being able to communicate your problem with your physician with as much detail as possible and keeping good notes. Pain in Parkinson’s like in any other disease sometimes is caused by the disease itself, at other times the medications and sometimes by completely unrelated factors just because we have Parkinson’s it does not exclude us from other illnesses which can cause pain (e.g. Diabetes, thyroid disease, fractures, arthritis, gout). With this in mind, you will be on your way to not only identifying correct source of pain but also getting appropriate treatment (which I will discuss in my next blog).

References: Wertheimer, Jeffrey. Understanding Pain In Parkinson’s. newsletter winter 2012


Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at you can also learn more about Parkinson’s disease at or at;, All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at contributor Contributor


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