The Parkinson and Movement Disorder (PMD) Alliance held a webinar in October where the speaker described different types of pain in Parkinson’s disease (PD) and how to manage these types of pain. Pain is an often overlooked non-motor symptom. Although pain is not the first symptom that describes PD, about 75% of people with PD have some degree of pain. The speaker was movement disorder specialist Dr. Johan Samanta. We at Stanford Parkinson’s Community Outreach attended the webinar and are sharing our notes.
It can be challenging to discern if a particular pain is due to PD or not. Chronic pain is a common symptom among the general population. However, there are aspects of PD that may exacerbate the pain experienced from a common problem. In addition, there are particular types of pain that are unique to people with PD.
Dr. Samanta addressed musculoskeletal pain (caused by decreased mobility and postural changes, dystonia (can affect the limbs, neck, face, tongue, jaw or even the muscles in the throat in addition to muscle rigidity), camptocormia, nerve root pain, neuropathy, depression linked with pain, and akathisia.
Here is an interesting question that came up during the webinar:
Question: Does tonic water/acupuncture help with the pain?
Answer: Massage therapy certainly helps with the pain. And yes, acupuncture if available to you from a well trained professional has shown to be very helpful for various forms of musculoskeletal pain. Magnesium and calcium can help at bedtime with certain types of cramping as well. Tonic water certainly will not hurt with the pain, and staying hydrated is also a big help with muscle cramping. The most effective treatment is trying to reduce that ON/OFF episode by optimizing your medication.
The Stanford Parkinson’s Community Outreach Program has webpages for additional information on pain and neuropathy:
The webinar was recorded, and is accessible on YouTube here
My detailed notes are below.
Regards,
Sheela Sakariya
“Twist and Shout – Pain and Cramping in PD” – Webinar Notes
Webinar Host: PMD Alliance
Webinar Date: October 11, 2021
Speaker: Johan Samanta, MD, movement disorders neurologist, AZ
Summary by: Sheela Sakariya, Stanford Parkinson’s Community Outreach
Musculoskeletal Pain
Most of the pain in PD is associated with musculoskeletal pain or the “cost of living pain.” These are the aches and pains that could have resulted from a sports injury, standing on concrete floor for 20 years, working in construction in the past, etc. These changes add to the arthritis changes in your knees, hips and back. So, these pains may not be directly part of Parkinson’s but there is a direct correlation. For example, if you hurt and you have Parkinson’s that causes you to move a bit slowly, which will in turn impact your ability to sit/stand. In addition, you have muscle rigidity that causes tightness/cramping in your muscles, and ligaments.
Movement and therapy
The more you sit, the more your muscles become tight. Sometimes, the last thing you want to do in PD is exercise and move; but moving is so important because we need muscles to be as strong as possible to support our posture, and take pressure off of our joints. Additionally, PD individuals need the flexibility and strength which makes exercise more crucial – we hurt more when we are out of shape and sedentary. At the end of the day, it’s important to stay in shape, and not get into the spiral of pain and deconditioning.
If pain is hampering your activity and engagement in the world, then it is time to address it with therapy. The idea of exercise is to proactively avoid situations that start developing in PD.
Camptocormia in PD
Camptocormia is defined as an abnormal, severe and involuntary forward flexion of the thoracolumbar spine, and some people with PD can develop this. Camptocormia is primarily developed due to rigidity in your core muscles and the tendency to curve your spine, which leads the torso to bend. The person with camptocormia finds it exhausting to keep the back/spine muscles straight and hence the bend in posture while walking/standing in your day to day activities. It can be very difficult to treat, but oome of the treatments include physical therapy and stretching to try to strengthen the back muscles. In some individuals, a brace can provide some benefit, and results can vary from person to person. In other cases, injecting botulinum toxin (botox) in abs and hip flexor muscles, relaxes those muscles and allows the individual to stretch, stand, and sit straight again.
Dystonia vs Dyskinesia in PD
Dystonia is involuntary contraction of muscles that causes abnormal posture. Some examples of dystonia include eyes trying to shut involuntarily, neck turns/pulls. In PD, there are additional symptoms of dystonia that we see such toe/foot cramping and curling, ankle turning, and calf cramping are the most common areas of pain. These symptoms can happen as medications wear out or sometimes they happen early in the morning.
Dyskinesia, on the other hand, is involuntary, erratic, writhing movements of the face, arms, legs or trunk. They are often fluid and dance-like, but they may also cause rapid jerking or slow and extended muscle spasms. These movements can also cause pain, cramping, spasm or contraction. These symptoms can occur at the peak of your medication (unlike dystonia).
The treatment for both dyskinesia and dystonia require adjustment to your medication – timing/dosage, adding other medication to smooth out the lows/highs. In more extreme cases, we may use botox if it’s a very specific area (toe curling, foot curling, neck spasms, etc.). In the extreme end, deep brain stimulation (DBS) is also helpful – it helps get rid of the ON/OFF episodes and brings things in a more consistent balance. For those folks with PD, who have many fluctuations including pain, then we recommend addressing those symptoms with DBS and speak to your provider about it.
Nerve root pain in PD
Nerve root pain is an aching or burning pain from muscles or skeleton, sharp pain from a nerve or nerve root, numbness or “pins and needles” pain also radiating from a nerve or nerve root, pulsing or aching pain that results from tightness or ongoing twisting and writhing movements. This pain is also referred to as neuropathic pain syndrome – sometimes the pain is focal in some part of the body, and we can try to use trigger point injections, or nerve block for specific areas in the body. For generalized pain in the entire body, we use an antidepressant or anti-seizure class of medications which help in resetting the dial in how your brain is sensing what is painful and what is not.
Neuropathy or Burning Mouth Syndrome
BMS is the medical term for ongoing (chronic) or recurrent burning in the mouth without an obvious cause. This discomfort may affect the tongue, gums, lips, inside of your cheeks, roof of your mouth (palate) or widespread areas of your whole mouth. The burning sensation can be severe, as if you scalded your mouth. Neuropathy has rarely been reported as related to PD, but it does happen. These pains do happen when on high doses of certain medications. There is also evidence that PD individuals who have Type II diabetes can present as neuropathy.
Depression & pain in PD
30-40% PD individuals have depression symptoms and may have a period when depression enters their life. There is definitely a link between depression and pain as there are changes in your brain chemistry and your processing of information that affect how you perceive pain and comfort. Depression sometimes can amplify your pain, and it always is better to step back and look at other aspects of life such as sleep patterns, hurting in other areas emotionally, financial stress, etc. Pain can feed depression, and vice versa. It’s always a good idea to address each of the issues separately and untangle the net.
Akathisia
Akathisia is a very specific syndrome – inability to sit still. You might need to fidget all the time, walk in place, or cross and uncross your legs; these movements are not dramatic but very unpleasant or annoying. Usually, akathisia is a side effect of antipsychotic drugs. Generally, for PD individuals I recommend tapering off the antipsychotic drugs and prescribing some other medications. Akathisia symptoms are not related to PD and most likely related to your medications.
Q & A Session
Question: Are knee replacement and hip replacement surgeries more risky with PD?
Answer: Surgery in general has advanced over the years – many can be done with just sedation and epidural. Many patients have had knee replacements without having to go through general anesthesia. The worst thing about surgery is general anesthesia; there have been papers published in the last 10 years that show that if the person with PD has been generally active/ambulatory, then PD individuals do not have a worse outcome than general patients. The real issue is if the OD individual is physically strong enough for rehab post surgery. There isn’t much evidence to suggest that stressors cause significant progression of PD in the brain. In other words, a healthy person with PD should be able to recover from surgery without issues.
Question: Is there a preferable sleep position to improve posture and can sleeping position contribute to pain in PD?
Answer: If it is a comfortable sleeping position and you are not sleeping 13 hours a day in that position, then it’s rarely a contributor to pain in PD. Sleeping in a recliner/sofa, for example, will contribute to your pain as your back muscles are stretched in a very awkward way. There is not a perfect sleeping position – if you find that you are very tight/sore/achy in the morning, then you probably should explore a different position. Also, strategically placing pillows may add some comfort and reduce the pain.
Question: What do you do for someone who is confined to a wheelchair and cannot respond to regular medications?
Answer: That is a very difficult situation. The intervention we can use in that situation are muscle relaxants, which has been used for individuals with spinal cord injuries. We can use other analgesics to manage the pain and that may include opiates, non opiate pain relievers, and anti-inflammatory medications. I recommend a referral to a pain management specialist when pain is the main issue for an individual with PD.
Question: What can you do about cramping in bed with PD?
Answer: These types of symptoms are related to OFF episodes – it depends on what medication you are taking and when you are taking it. Sometimes adding a bedtime dose will alleviate that, and other times adding something longer lasting (dopamine) has also been proven helpful and can help smooth out the dips with your medication.
Question: Does tonic water/acupuncture help with the pain?
Answer: Massage therapy certainly helps with the pain. And yes, acupuncture if available to you from a well trained professional has shown to be very helpful for various forms of musculoskeletal pain. Magnesium and calcium can help at bedtime with certain types of cramping as well. Tonic water certainly will not hurt with the pain, and staying hydrated is also a big help with muscle cramping. The most effective treatment is trying to reduce that ON/OFF episode by optimizing your medication.
Question: From a dietary perspective, are there foods that we should avoid for the pain?
Answer: The tendency to shift away from protein and adding carbs and sugar can be problematic when it comes to pain. The up and down in the blood sugar can aggravate pain symptoms. Hydration is the best thing you can do from a dietary standpoint to reduce pain symptoms – reduces cramping, and reduces severity of musculoskeletal pain. Additionally, fish oil has some antiinflammatory effects. Have your vitamin levels checked by your provider. Avoiding carbs will help with constipation issues or severe motility issues. Try to follow the mediterranean diet or the colors diet – trying fresh fruits and vegetables. Avoid things that bind you up!
Question: How about medical marijuana?
Answer: The country and culture are changing and there is evidence that some of the best medical uses around cannabis is pain! Clinical trials have been published around cannabis that show that one type of cannabis helps in the neuropathic pain (burning type of pain). And another type of cannabis has more impact on the musculoskeletal and arthritis type of pain. The downside is you might have a bad experience for a few hours if the formula is just not good for you. In terms of tolerability, the ones that are 1:1 ratio have less of a psychedelic effect.
Question: What are some tips you can give for a person with PD in pain?
Answer: If you are having pain, do bring it up to your provider. Treat pain as its own entity – it likely is related to your PD. And, be your own investigator in trying to find out what triggers the pain in your body, where the pain is, and how long it lasts.