Screening Parkinson’s Pain

That’s screening, not screaming.

Earlier this year, the European Journal of Neurology published a study which resulted in the creation of a 14-item questionnaire that patients with Parkinson’s can complete on their own to identify specific pain they feel, which they can then share with their doctors.  The questionnaire correlates well with a similar questionnaire that doctors and other medical personnel would use to determine the kinds of pain their patients were experiencing.

I think the value of this is three-fold.  First, it helps Parkies objectively specify exactly the pain they have.  Second, the questionnaire puts the Parkinson’s patient on the same page with the doctors.  Third, it moves pain into the spotlight, whereas previously it might be overlooked when the patient meets with a doctor.

What kinds of pain are we talking about?  Well, you can open the actual questionnaire right here:  Parkinson Pain Questionnaire.  Or you can browse through this bullet list:

• Pain around the joints
• Pain related to a specific organ
• Generalized pain in your stomach area
• Generalized dull, aching pain within your entire body
• Pain caused by dyskinesia
• Muscle cramps during “off” periods
• Generalized pain during “off” periods
• Pain related to restless legs syndrome at night
• Pain related to turning over in bed when you’re sleeping
• Pain when chewing
• Pain related to grinding your teeth at night
• Burning sensation in your mouth
• Burning pain in your limbs
• Shooting pain down the limbs and/or pins and needles

The questionnaire was developed by a team of researchers in Europe who interviewed and followed 300 Parkies and 150 controls.  The volunteers underwent a battery of tests and filled in a variety of questionnaires before the researchers came up with the final product that patients can fill out on their own.

Here are some key take-aways quoted verbatim from the article:

The prevalence of pain in Parkinson’s disease has been estimated to be around 68%.  However, pain in PD is still under-diagnosed and often undeclared.

PD patients with pain are more likely to suffer from anxiety, depression, and worsened sleep quality.

Prevalent in the prodromal, early, advanced and palliative stages of PD, pain is one of its most important non-motor symptoms.

The non-motor symptom burden of PD, which includes pain, can affect health-related quality of life with a greater impact than the motor symptoms.

On the one hand, it hurts just thinking about it.  However, this self evaluation may help hundreds of Parkies if they fill it out before visiting their doctor, and take it with them.