8 Common myths about Parkinson's and pain: An interview with the experts
Who is Prof K. Ray Chaudhuri?
Ray is the director of Parkinson's Foundation Centre of Excellence at King's College, Research Director and Assistant Medical Director at King's College Hospital in London, England, UK.
His research interests include Parkinson's Disease and he has been involved in pioneering work on defining non-motor symptoms and non-motor phenotypes for Parkinson's disease. He is considered a world’s authority in these areas. We had the pleasure to sit down with him and pick his brain about Parkinson’s disease and pain.
Who is Dr Katarina Rukavina?
Dr. Katarina Rukavina is a Neurologist and Movement Disorders PhD fellow studying under Professor K Ray Chaudhuri at the Parkinson Foundation Centre of Excellence at King’s College Hospital NHS Foundation Trust at the King’s College London.
Katarina’s foremost research interest in the Parkinson’s disease (PD) related impairment of pain processing pathways. Driven by a desire to understand, and to be able to one day modulate the experience of pain in individuals with PD, Katarina works jointly with basic neuroscientists on projects involving functional magnetic resonance imaging (fMRI), quantitative sensory testing (QST), and analysis of blood biomarkers and single-nucleotide polymorphisms (SNPs). Katarina obtained her medical degree from University of Zagreb School of Medicine and received her speciality training in Neurology in Hamburg, Germany.
Myth 1: Pain is not a part of Parkinson’s disease
Pain is in fact an integral part of the non-motor symptom (NMS) complex of Parkinson’s disease (PD). It was originally documented by Dr James Parkinson himself in 1817, when he mentioned pain of the right (more affected) hand in one of his patients. Half a century later, in 1872, Charcot, who described the two different types of PD (rigid/akinetic and tremulous). He also acknowledged pain as one of the symptoms frequently presentin people with Parkinson’s (PwP). (1)
Today, some 200 years later, we still do not completely understand the cause of pain in PwP. It is a non-motor symptom (NMS) present from prodromal (before the motor symptoms of disease) to the late palliative stages of PD. Most likely, PD-related pain has multiple origins — changes of central structures involved in pain processing in the brain, the spinal cord and peripheral nerves, other comorbidities (medical conditions), as well as motor symptoms of PD (motor fluctuations, including dyskinesia and off periods characterized by dystonia)— these may all play a part in PD pain, resulting in an overall heightened experience of pain. (2) (3)
Myth 2: Pain is not common in Parkinson’s disease
The majority of PwP experience PD-related pain at some point in the course of the disease and over 91% of PwP live with chronic pain.(4) As PD progresses, pain is more likely to be present and might increase in its severity. Female sex, dyskinesia, postural abnormalities (e.g. camptocormia, Pisa syndrome which include a bent spine), depression, anxiety and sleep disturbances have been recognized as possible risk factors contributing to chronic pain in PwP. (3)
Myth 3: Pain only occurs in later Parkinson’s
disease
Pain occurs across all disease durations (or research stages) of PD from the prodromal stage (before a clinical diagnosis, up to ten years before the motor symptoms occur) to the late stage termed the palliative stage of PD.(5) The patterns of pain in these various stages can be highly variable. The most common painful conditions in the prodromal stage of PD are shoulder pain, neck pain, lower back pain— or pain in the limb likely to be more affected by PD. Pain as the first complaint of PD might be misleading for clinicians, sometimes resulting in inappropriate referrals and misdiagnosis. For example, an erroneous treatment for frozen shoulder may be prescribed in some patients.
Myth 4: There is no good way to explain to my
health care provider about the pain I am
experiencing
Clinicians and researchers, led by the King’s College Hospital Parkinson’s research team, developed a pain scale specifically for PwP, called the King’s PD Pain Scale (KPPS), which was validated in an international study. The KPPS distinguishes seven different sub-types of PD-related pain and measures its intensity and frequency. The scale can be completed together with your doctor/clinician.
More recently, the same team pioneered the world’s first modification of the King’s PD Pain Questionnaire (KPPQuest), which is completed by patients. This new scale enables PwP to directly describe the kind of pain they are experiencing. We recommend that you ask for this questionnaire and complete it while you are waiting to be seen— you can then share with your health care professional the results during the visit. This approach will facilitate an easier communication about the types of pain you may be experiencing— such as the “burning mouth syndrome” or pain in your fingers and arms.
Myth 5: There is nothing that can be done for my
pain related to Parkinson Disease
While it is important that your clinician recognizes and treats the pain you are experiencing, there are several “self-help” strategies you might employ while waiting to be seen. For example, stretching the joints, massage, or a warm bath might all be helpful when you are in pain. Studies suggest that after physical exercise PwP are less sensitive to pain. Even a low intensity walk may help. (6) Hence, if you are suffering from chronic pain, it might be helpful to incorporate a physical activity which you enjoy into your day-to-day life. Perhaps also consider regular walks with your dog? If you have low back pain, yoga-based exercises might be particularly beneficial. (7)
Myth 6: Medication for Parkinson’s disease is not
helpful for pain
In PwP, dopamine and pain are closely linked. Experimental studies have shown that PwP are more sensitive to pain, and their pain thresholds are lower when in the “off” period ( when people feel their meds are not working)— this seems to improve after the intake of levodopa.(8) Another study showed that levodopa normalized the over-activation of brain regions involved in the experience of pain. (9)
PwP often experience pain when in the “off” state— this might either be dystonic (cramping, tight) pain affecting a specific part of the body, or a generalized, dull ache –- “central pain”. Thus, to achieve a successful treatment, the type of PD-related pain needs to be identified as a crtical first step (one size does not fit all) — the treatment needs to be customized based on the type of pain. For instance, off -related pain may need treatment of the off period using dopaminergic drugs, while pain due to dystonia may require treatment with botulinum toxin. Short lasting, acute off-medication related pain may also be helped by a rescue-type dopamine replacement such as an injection or inhaled formulation. Central pain may need specific treatment with opiate drugs— but always under expert monitoring (a pain trained specialist).
Myth 7: There is no role for classical
antiinflammatory medications in Parkinson’s pain
Medication for PD does not always help to relieve pain in PwP. Non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen and diclofenac, can be helpful for musculoskeletal pain, the most common form of pain in Parkinson’s.(4) Opioids might help for chronic pain in some PwP. In particular, prolonged-released oxycodone/naloxone has been recommended in the International Parkinson and Movement Disorders Society guidelines but must be used in special circumstances with expert monitoring.(10) Importantly, the benefit of the opioid treatment needs to be weighed against the potential side effects, which include dizziness, nausea, headache, constipation or cognitive issues— especially in elderly PwP.
Myth 8: I prefer not to take any additional drugs.
There aren’t “non-medication” approaches to
addressing pain in Parkinson’s
Medical practitioners in ancient China used acupuncture to relieve pain. Today, we know that acupuncture stimulates sensory nerves in our skin and muscles, and thus prompts our body to produce natural pain-relieving substances, such as endorphins. As for the PD-related pain, one recent study has shown that acupuncture improves processing of pain in brains of PwP and chronic pain.(11) A course of acupuncture might have a longer-lasting effect than a single session. Another interesting option is a high-frequency repetitive transcranial magnetic stimulation (rTMS) treatment which has shown to have a beneficial effect for musculoskeletal pain in PwP in a recent trial— and hence might be used as an adjunctive treatment for chronic PD-related pain (in the future). (12). Neuromodulation of the brainstem by wearing special headphones can also provide hot and cold stimuli to the ears for 30 minutes a day at home— data suggest that doing this for a monthmay provide benefit for some non-motor symptoms in PwP. Finally, a trial called the Pave-Park study will investigate this innovative treatment strategy for pain in Parkinson’s disease.
To read more books and articles by Michael S. Okun MD check Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonBedside
He also serves as the Medical Director for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.
References:
1. Goetz CG. The history of Parkinson's disease: early clinical descriptions and neurological therapies. Cold Spring Harb Perspect Med. 2011;1(1):a008862.
2. Lawn T, Aman Y, Rukavina K, Lampretsas GS, Howard M, Ballard C, et al. Pain in the neurodegenerating brain: insights into pharmacotherapy for Alzheimer's Disease and Parkinson's Disease. Pain. 2020.
3. Rukavina K, Leta V, Sportelli C, Buhidma Y, Duty S, Malcangio M, et al. Pain in Parkinson's disease: new concepts in pathogenesis and treatment. Current opinion in neurology. 2019;32(4):579-88.
4. Buhmann C, Wrobel N, Grashorn W, Fruendt O, Wesemann K, Diedrich S, et al. Pain in Parkinson disease: a cross-sectional survey of its prevalence, specifics, and therapy. Journal of neurology. 2017;264(4):758-69.
5. Pont-Sunyer C, Hotter A, Gaig C, Seppi K, Compta Y, Katzenschlager R, et al. The onset of nonmotor symptoms in Parkinson's disease (the ONSET PD study). Movement disorders : official journal of the Movement Disorder Society. 2015;30(2):229-37.
6. Nguy V, Barry BK, Moloney N, Hassett LM, Canning CG, Lewis SJG, et al. Exercise-induced hypoalgesia is present in people with Parkinson's disease: Two observational cross-sectional studies. European journal of pain. 2019;23(7):1329-39.
7. Myers PS, Harrison EC, Rawson KS, Horin AP, Sutter EN, McNeely ME, et al. Yoga Improves Balance and Low-Back Pain, but Not Anxiety, in People with Parkinson's Disease. Int J Yoga Therap. 2020;30(1):41-8.
8. Gerdelat-Mas A, Simonetta-Moreau M, Thalamas C, Ory-Magne F, Slaoui T, Rascol O, et al. Levodopa raises objective pain threshold in Parkinson's disease: a RIII reflex study. Journal of neurology, neurosurgery, and psychiatry. 2007;78(10):1140-2.
9. Brefel-Courbon C, Payoux P, Thalamas C, Ory F, Quelven I, Chollet F, et al. Effect of levodopa on pain threshold in Parkinson's disease: a clinical and positron emission tomography study. Movement disorders : official journal of the Movement Disorder Society. 2005;20(12):1557-63.
10. Seppi K, Ray Chaudhuri K, Coelho M, Fox SH, Katzenschlager R, Perez Lloret S, et al. Update on treatments for nonmotor symptoms of Parkinson's disease-an evidence-based medicine review. Movement disorders : official journal of the Movement Disorder Society. 2019;34(2):180-98.
11. Yu SW, Lin SH, Tsai CC, Chaudhuri KR, Huang YC, Chen YS, et al. Acupuncture Effect and Mechanism for Treating Pain in Patients With Parkinson's Disease. Frontiers in neurology. 2019;10:1114.
12. Li J, Mi TM, Zhu BF, Ma JH, Han C, Li Y, et al. High-frequency repetitive transcranial magnetic stimulation over the primary motor cortex relieves musculoskeletal pain in patients with Parkinson's disease: A randomized controlled trial. Parkinsonism & related disorders. 2020;80:113-9.