Pain and Parkinson’s: Ask the expert
Pain can be a debilitating symptom of Parkinson’s and more research is needed to better understand and manage it. We chatted to Dr Jenni Naisby, at Northumbria University, to hear more about her research into pain management for people with Parkinson’s.
Pain is both a hard to treat and under-treated symptom for some people with Parkinson’s. It is a non-motor symptom that can affect all aspects of a person’s life from being able to move, to sitting still, to even being able to concentrate. It is entirely subjective which is why it can be hard to treat.
Parkinson’s UK recently carried out a survey where people were asked to list up to 3 symptoms or side effects of Parkinson’s that troubled them most. 37% of people said that non-motor issues were important, listing pain as one of those. It is estimated that around 60% of people with Parkinson’s may experience pain at some point in their lives. Read more about what symptoms matter most to people with Parkinson's.
Understanding pain in Parkinson’s is a growing research area and Dr Jenni Naisby, a musculoskeletal physiotherapist from Northumbria University, is focusing on understanding how often people with Parkinson’s experience pain and the impact that it has on their lives. The long-term aim of the research is to create a toolkit that could help an individual manage their pain as well as improve the care they receive. Jenni also wants to use her research as an education and awareness tool to boost the understanding of pain and Parkinson’s in healthcare professionals.
We chatted to Jenni to find out more about her recently published research and her motivations to understand more about pain in Parkinson’s.
Our Expert: Dr Jenni Naisby
Jenni is a Senior Lecturer in Physiotherapy at Northumbria University and a Visiting Researcher with the Brain and Movement Group at Newcastle University. Jenni is a registered physiotherapist with an interest in chronic pain. Jenni aims to explore the influence of pain on Parkinson’s and support the development of non-pharmacological management in this area.
What do we currently know about pain in Parkinson’s?
Pain is very complex, it can influence mood, quality of life, and prevent people from doing a lot of things. There are different types of pain that someone with Parkinson’s may experience:
- neuropathic (nerve pain)
- dystonia (involuntary muscle contractions)
- shooting pains
- muscle pain: the most common and can be caused by other motor symptoms such as rigidity and reduced joint movement.
Pain can fluctuate and change day to day so it is important to understand an individual’s symptoms and descriptions of pain. There is a growing body of research that shows that pain is most problematic in the early stages of Parkinson’s however pain can develop at any point throughout someone’s Parkinson’s journey, and everyone experiences symptoms of Parkinson’s differently. Due to this variability, Jenni believes a personalised approach will be needed to develop pain management strategies in the future.
How is pain currently measured?
Pain is subjective which is one of the challenges that healthcare professionals face when trying to understand and manage this symptom. Health professionals need to understand the multifactorial impact of pain on people with Parkinson’s. Current ways of measuring pain often involve scales where people either circle a number or use a visual scale to rate the severity. However, there is only one scale that is specific to people with Parkinson’s who experience pain: the King’s Parkinson’s pain scale.
What were the aims of the research?
The main aim of the research was to understand the impact of pain for people with Parkinson’s and their current pain management techniques whether that is medication or non-pharmacological approaches such as exercise. Jenni also wanted to understand whether people feel supported by healthcare professionals in the management of their pain.
How was the research carried out?
The research collected the opinions and experiences of people affected by Parkinson’s through a survey. It was completed in 2 parts, the first half was focused on current pain management strategies that people used and how much pain impacted their lives, and the second half on shaping the next stage in the research.
To make sure that the management techniques were relevant to the Parkinson’s community, Jenni worked with the Research Involvement team at Parkinson’s UK to gather insights and experiences to help shape the survey questions and next steps for the research. Jayne was a member of the Patient and Public Involvement group which is made up of people affected by Parkinson’s, that helped Jenni with her research. Jayne has included a quote from her experience working on research:
Jenni stressed that everyone’s experience and opinion was important which encouraged the group to speak confidently and honestly without judgement. I certainly learnt a lot from participating in this session and I am sure that Jenni’s research will help people with Parkinson’s and healthcare professionals to understand the, sometimes forgotten, issues surrounding pain management.
Jayne Seymour, a member of the Patient and Public Involvement group
What did the research show?
Treatment options are currently limited but lots of people from the survey said that they currently use exercise as a management strategy which we know helps with lots of other symptoms, as well as behaviour change techniques, pain education, relaxation techniques, and complementary therapies such as acupuncture.
115 people with Parkinson’s and 10 carers responded to the survey, and 70% of people stated that pain impacted their daily life which further highlights the need for creating better pain management strategies that are relevant for people with Parkinson’s.
The survey showed that people with Parkinson’s approach different healthcare professionals as they are unsure of who they should be talking to. 48% of people spoke to their Parkinson’s nurse while 38% spoke to a GP. People also showed that they wanted a self-management approach with the support of healthcare professionals.
A large number of people highlighted that improved pain management would provide an overall positive impact on general wellbeing, in particular by improving activity and quality of life.
You can read the full research paper on the Sage Journals website.
What are the next steps?
Jenni has applied for funding to continue this research to use and build upon the valuable insights to develop a toolkit to help with pain management. In the long-term, Jenni would like the toolkit to be available to the Parkinson’s community across the UK as well as a matched clinical training programme to help educate healthcare professionals in pain management in Parkinson’s.
A special thank you to Dr Jenni Naisby for her help writing this blog.
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