“Pain is only relevant if it still hurts.” Ed Sheeran
I was reading an article recently regarding the epidemic of pain killers in women in the USA and recent changes in healthcare in an attempt to curtail this problem. It got me thinking about pain as an initial presentation in neurological diseases especially in Parkinson’s disease. Like many other neurological illnesses, PD has a big pain component which varies from person to person. It is believe that 40-80 % of people who have PD have pain depending on the source. The pain can occur at any stages of disease and can take many shades within the same individual even if there has been no advance to the disease from one stage to another. It is of note that pain can be an initial presentation even before motor symptoms manifest themselves. As it was the case for me and many other women particularly of young onset. Thus, pain is more frequent and more pronounced in younger patients especially as an initial presentation. However, because pain is subjective it is too often misunderstood and misdiagnosed by many physicians. Hence, I believe this is the number one reason the authors of Opioid Addiction: The Gender Gap, stated that “addiction is much more common in men than women killing more women per year than men.”
Since, women with young onset PD have a higher rate of pain at presentation. They are the ones to be more likely misdiagnosed and also placed on opioids for chronic intractable pain. Hence it is imperative that we take a proactive approach to getting not just diagnosed earlier but starting treatment early. Furthermore, getting our pain treated properly to avoid going down the slippery slope of opioid addiction with a potential increased risk of mortality for women compared to men. This is because women across the board not excluding PD have more chronic pain then men. I for one have pain as one of the major impacting symptoms of my Parkinson’s disease which disrupts my life more than any other single symptom. However, the key to getting the right treatment is getting the right diagnosis as the source of the pain. In the case of Parkinson’s – there should rarely be a time where opioids (like hydrocodone, fentanyl, morphine, codeine, etc.) are required. In my experience, because patients have an increased risk of herniating disc the initial pain that comes from a pinched nerve will only respond to strong pain killers like hydrocodone and should not be withheld. However, the intake of these should have a set finite amount of time. They are not meant to be taken long term where addiction is most likely to occur. Having experience multiple types of pain as a patient from dystonia, to joint pain, to thalamic central pain and herniated disc I can attest without a doubt that dopamine agents will treat and reverse the majority of pain syndromes without the need of opioids. I took a few doses of hydrocodone prior to my back surgery since it was the only thing that would break the intractable pain and then a day or two post-surgery. However, in my practice the use of Vioxx was excellent for joint pain caused by PD and no other cox2 inhibitors since its recall has been able to mimic this response in any of the people I have treated or talked to since. There was something definitely special about that drug that helped all PD patients I ever put on. However for my central –non localized, intractable boring pain. Azilect was a life saver. I understand this has been the case for many of whom I spoken to as well the experience of my physician with many of her patients.
As I said at the beginning, there are many types of pain in people with Parkinson’s. One of the most common and frequent pain syndromes is radicular pain. This occurs from severe neck and back rigidity as well as dystonia’s and dyskinesia’s which can distort the normal curvature of the spine. The lack of sufficient dopamine in the brain is typically the cause for the abnormal postures as seen with stooped posture or increased kyphosis can lead to stretching and pinching of nerve roots mimicking symptoms of radiculopathy. This has happened to me many a time, all I need is an adjustment of my medications; usually a higher dose to solve the problem. However, in my experience, not only can a PD person have pinched nerves in the spine but can have symptoms of trapped nerves like carpal tunnel and ulnar syndrome caused by severe rigidity of muscles elongating nerves passing through. No need for surgery for most of these problems usually increased dopamine dosing is the answer without need to recur to opioids either.
A deceased level of dopamine is the common culprit often times for dystonia and joint pain. The increased muscle stiffness can be so profound as to actually dislocate joints. Patients with PD often times have a shoulder dislocation but can also involve other joints rarely. Thus, before you pursue any other treatment ensure that your PD medications are at their optimal. Perhaps also use centrally acting muscle relaxants like baclofen and toxins like Botox.
In cases, where dyskinesia’s have caused the pain by distorting curvature and musculature of axial muscles and even herniated disc, the first order of business is treat the problem –STOP the dyskinesia’s either through medication or surgically (DBS and other) or combination. Then you can begin to treat the pain by performing neck/back surgery if necessary and using prophylactic medications anticonvulsants-like Keppra, Topamax, anti -depressants in the tricyclic family such as Elavil, Remeron and antidepressants in ssri and snri family- like Cymbalta, Effexor and so on.
Thus, as Parkinson’s community opioid addiction as a whole should not be something we need to contend with if we follow the mantra that the majority of pain syndromes CAN and should be treated by increasing and adjusting PD medications as a first step.
Kam Katherine. (September 2017) “Opioid addiction: the gender Gap” medical editor- Neha Pathak, WeBMD magazine. 69-71.
all rights reserved Maria De Leon