The Michael J. Fox Foundation (michaeljfox.org) hosts webinars on the third Thursday of every month. Lately they’ve been re-broadcasting recordings of previous webinars. Last Thursday’s webinar was a re-broadcast of a July 2016 webinar on Parkinson’s pain and fatigue.
There is often fatigue in all of the disorders in the Brain Support Network group, and many of our community members experience pain. Listening to the webinar recording may be worthwhile for many. The only information that will NOT be relevant to most of you is the info about off-periods caused when Parkinson’s medications wear off.
You can find the recording online here: (you’ll have to register first)
https://www.michaeljfox.org/un
Here are two highlights from the question and answer session:
Q. What about treatments for people in wheelchairs?
A. You definitely need to work with a good physical therapist for the best advice for exercising in a chair. Chair yoga and tai chi are just the tip of the iceberg. You don’t get an exercise pass because of the chair.
Q. What can family members do to help with pain or fatigue?
A. Care partners should use socialization to get their person with Parkinson’s (PwP) up and going. It really is helpful just to get the PwP out of the house, walk in the neighborhood, chat with a neighbor, create a new recipe or anything to get your mind off the PD. Walk the dog or exercise in any way is really helpful.
Brain Support Network volunteer Denise Dagan listened to the re-broadcast last week and has shared notes.
Robin
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www.michaeljfox.org/understand
Notes by Denise Dagan, Brain Support Network volunteer, May 2018
Parkinson’s Pain and Fatigue
Webinar by Michael J. Fox Foundation
July 21, 2016
Speakers: Julie Pilitsis, MD, PhD, Adolpho Ramirez-Zamora, MD, and Toni Palumbo, person with Parkinson’s
PAIN
More than 75% of people with PD may experience pain. Pain in PD can come from:
– Muscle rigidity and slowness
– Dystonia (muscle cramping)
– Constipation and bowel pain
– Musculoskeletal pain
– Central pain (burning sensations and sharp bursts of pain)
– Dyskinesia (involuntary movements)
Pain is as common in Parkinson’s as other non-motor symptoms. Pain can be one of the earliest symptoms and the source is sometimes mis-diagnosed before tremor and/or gait and balance symptoms present to be able to diagnose PD and associate the pain as a PD symptom.
Pain can be exacerbated by stress, over exertion or illness. The degree to which someone experiences pain varies by individual perception, medication effectiveness in controlling motor symptoms (on/off periods). Dystonia during off periods (when medications are wearing off) can be painful.
Dyskinesia begins after 5-7 years of PD medication treatment and can be painful.
Pain is one of the most under treated symptoms of PD.
Talking to your physician (start with your neurologist) about your type of pain can direct treatment. Discuss the location, feeling and duration of your pain to understand the root cause and target treatment for best chance of relief.
– Your doctor may add, reduce or change dopamine medication dose and type
– Anti-inflammatories, painkillers, opioids (as a last resort as it is constipating) and antidepressants may help manage pain
– Non-pharmacological methods include:
Exercise
Massage
Relaxation techniques (e.g. hypnosis, mindfulness, tai chi, yoga)
Acupuncture
Heating pad or cold pack
Start with your neurologist but you may need a team approach to manage pain as you determine the mechanism causing the pain or eliminate through one physician at a time where the pain does NOT originate. You may need to move on to a gastroenterologist, orthopedist, urologist, other specialist or chronic pain management clinic.
There is concern with drug interaction in PD because there may already be a cocktail of meds prescribed just for the PD symptoms and adding more to treat pain is worrisome and could result in under treatment. Depending on the source of the pain doctors can start with NSAIDs, and physical therapy which may include heat, massage, and exercise. Of course, excruciating pain needs to be treated more aggressively and immediately.
Toni has been diagnosed for 12 years so treats pain more aggressively, including botox injections for dystonia. She uses painkillers (not opioids) and finds hot tub, tai chi, boxing and socialization most helpful for pain. The movement disorder specialist advises Toni on all over the counter meds and supplements before taking them to avoid medication interactions. Toni finds boxing class + an hour of bike riding is too much and causes pain. Her movement disorder specialist helped her find a good exercise balance to avoid pain.
FATIGUE
Fatigue is another challenging non-motor symptom of PD. Fatigue: Overwhelming sense of tiredness, lack of energy, and feeling of exhaustion that interferes with normal function.
– Estimates vary, but up to 70% of people with PD may experience fatigue
– Parkinson’s fatigue eases with exercise and activity
– Fatigue may be associated with:
Early sign of PD
Prolonged disease duration
Increased disease severity
Depression, anxiety and apathy
Sleep disturbances
Off episodes
Toni describes fatigue as being very close to apathy, as she can wake from a good nights sleep with fatigue. She battles fatigue days by walking her dog every 20 minutes for 10 minutes, just to get up, moving and motivated.
Fatigue in PD is extreme exhaustion which cannot be explained by effects of or lack of medication, lack of rest, lack of sleep. Fatigue is improved with exercise and good medication management as it can be worse during off times. Whereas, apathy in PD is a lack of drive to do things one normally particularly enjoys doing.
Fatigue can increase one’s experience of pain and short temper. Any type of exercise will reduce fatigue (boxing, cycling, etc.), especially if you exercise together as socialization can distract from pain and fatigue.
Interventions and planning can help manage fatigue. Doctors may adjust or stop medications or may prescribe other medications:
– Wakeful-ness agents
– Stimulants
– Antidepressants
Non-Medication interventions:
– Exercise
– Socialization
– Daily scheduling: planned rest and pacing of activities
– Vitamin supplements: vit. B, iron, folate and magnesium
– Lifestyle changes: caffeine, alcohol and tobacco reduction
You should discuss any supplements you take with your doctor as some can be toxic at certain levels, cause nerve damage and have other adverse effects. Your physician should do blood work prior to recommending you take B complex or other supplements which can treat symptoms, including pain.
Caffeine has been studied in reducing fatigue in PD, but found to be ineffective. It has also been tested in treating daytime sleepiness with inconclusive effects. If you take too much caffeine or have clear worsening of fatigue when caffeine is out of your system you need to reduce caffeine and increase exercise.
QUESTION AND ANSWER
Q. How is DBS (deep brain stimulation) useful for treatment of pain?
A. In general, after DBS in the sub-thalamic nucleus people report a reduction of pain associated with movement. (In 2016 they did not) know how long this effect lasts. Perhaps existing DBS can be adjusted in order to treat pain. As of 2016 animal trials were under way to learn more about this.
Q. Please provide a better definition of “off-time.”
A. The longer you have PD you are more likely to experience this more frequently. On is when your medication is effective. Off is when your medication has worn off. As you take PD medications over many years, it wears off sooner and sooner, causing more off times and resulting in needing to take medications more frequently throughout the day. There are newer medications and medication formulations to combat this effect.
Q. What about treatments for people in wheelchairs?
A. You definitely need to work with a good physical therapist for the best advice for exercising in a chair. Chair yoga and tai chi are just the tip of the iceberg. You don’t get an exercise pass because of the chair.
Q. What do we know about medicinal marijuana?
A. Marijuana has compounds that we thought can be helpful in PD, especially in dyskinesia and tremor although recent studies have not shown this. Concern about potential side effects, particularly with respect to cognition and falling are very real. We don’t know how marijuana could affect fatigue because only stimulants have been tested for fatigue. Marijuana has the opposite effect so it hasn’t been studied for fatigue.
Q. What can family members do to help with pain or fatigue?
A. Care partners should use socialization to get their person with Parkinson’s (PwP) up and going. It really is helpful just to get the PwP out of the house, walk in the neighborhood, chat with a neighbor, create a new recipe or anything to get your mind off the PD. Walk the dog or exercise in any way is really helpful.
Q. What is the effect of alcohol on fatigue?
A. As with caffeine, moderation is the key. If you’ve spoken with your neurologist and determined it is fine, then fine. If you are using alcohol to sleep you have a problem because alcohol should not be self medication. Caffeine is the same, if you need it for wakefulness it will only cause you more fatigue and probably more pain.
Q. How do you determine what kind of pain you are experiencing? It could be normal aging or a PD symptom. Is it important to distinguish?
A. It is important to distinguish. In the past we didn’t think pain was part of PD. Neurologists thought of PD as exclusively a motor disorder, but now we know there are many non-motor symptoms, including pain. Sometimes, it is very difficult to tell the cause of pain. Most of the time the source is multi-factorial (has many causes). It can be medication effect in addition to orthopedic or arthritic. An in-depth discussion and complete history can help your neurologist to guide you to the most probably cause and most effective treatment. Be persistent!
Q. What do we still need to know about pain and fatigue in PD?
A. Treating pain and fatigue must know the mechanisms causing pain from the brain out into the body. It would be great if we could have biomarkers and specific measures to determine if inflammation, neurologic sources, or others are the source of pain so we can target treatment.
Q. What do you recommend people do approach treatment of pain and fatigue?
A. The best thing is to have an open dialogue with yourself, your family and your doctors to determine what is contributing to pain and fatigue. We sometimes don’t realize what stressors are contributing to worsened PD symptoms. Socializing and exercising need to be as much a part of your treatment as medications, diet and sleep.