If you are living with Parkinson’s disease, you might often feel run-down, out of energy, or even a bone-deep kind of tired that isn’t relieved with rest. Those feelings of intense tiredness are known as fatigue — a symptom that affects at least 50 percent of those with Parkinson’s.
Many MyParkinsonsTeam members experience fatigue. “I didn’t know it was caused by Parkinson’s disease. I just thought I was getting lazy,” said one self-proclaimed chronic napper.
“I’m getting a better understanding of fatigue reading other Parkinson’s disease patients’ stories and knowing I’m more ‘normal’ than I thought,” wrote another member, relieved.
Fatigue in Parkinson’s disease is often debilitating. This fatigue can take the form of physical exhaustion that makes you feel completely run-down and without energy. This is described as the sort of exhaustion that makes moving nearly impossible. It’s not just sleepiness — it’s feeling weary, without enough energy to even get out of bed or off the couch.
“My day would be much better if I didn’t get so tired by noon,” one MyParkinsonsTeam member shared. “After noon, about all I can do is sit in the recliner or lie in the bed and sleep for a couple of hours.”
Fatigue can also show up as mental exhaustion. Mental fatigue makes concentrating nearly impossible and can result in an inability to remember things or follow simple directions. As members have shared, you may feel excessive daytime sleepiness no matter how much rest you get: “I too suffer from chronic fatigue. I believe I could sleep for 24 hours and still be tired.”
For some with Parkinson’s disease, fatigue is a constant. Others, however, find that their fatigue comes and goes. One member shared that they are “not always tired and lethargic, but sometimes, it hits me for a whole day. I fall asleep often when sitting after eating, while watching TV, during quiet times, and generally ‘doze’ when I used to not do it.”
Together, mental and physical fatigue are challenging. Sometimes, they may even feel disabling. In many cases, these symptoms can make it difficult to do the things you love or to participate in social activities. As one member wrote, “I struggled with fatigue for quite some time. I used to be a runner/walker and found that, after 20 to 30 minutes, the fatigue would feel almost unbearable.”
“I’m always fatigued,” admitted another member. “Before Parkinson’s disease, I worked full-time as an infection control nurse. I walked 4 miles a week (1 mile a day) at lunchtime and did water aerobics on Saturdays. Now, I am too tired to do most anything.”
Fatigue can also turn daily activities that were once a breeze into monumental challenges. “When I’m in the ‘off’ mode,” wrote a member, “I can’t even imagine going for a walk. Taking a shower is like climbing Mount Everest. It bothers me when people say exercise will help. If I can’t even shower or get out of my PJs, what they suggest is so unrealistic. I would love to have the spark of life it takes to exercise.”
Parkinson’s symptoms are categorized into motor (movement-related) and nonmotor (not movement-related). Fatigue is considered a nonmotor symptom of Parkinson’s.
Fatigue associated with any disease can be a result of the disease itself (primary fatigue), or it can be the result of the disease’s symptoms (secondary fatigue). In Parkinson’s disease, evidence indicates that fatigue is mostly primary. Fatigue is often experienced before motor symptoms first appear. Because fatigue often clusters with other conditions (like depression, apathy, sleep disorders, and anxiety) and those conditions can also lead to fatigue, it’s difficult for researchers to unravel its true causes.
Currently, studies support that the pathophysiology (clinical origins) of primary fatigue in people with Parkinson’s is related to inflammation and dysfunction in specific parts of the brain. This inflammation and dysfunction particularly affect the basal ganglia — the part of the brain involved in controlling motor function and in maintaining the balance of important neurotransmitters, like dopamine and serotonin. One study also found that fatigue in Parkinson’s was correlated with reduced frontal lobe circulation. The bottom line? Parkinson’s disease disrupts the function of specific parts of the brain to directly cause fatigue.
There is still much work to be done in figuring out the specific causes of fatigue in Parkinson’s disease in order to arrive at more effective treatment options. However, there are some things that you and your loved ones can try to help manage fatigue caused by Parkinson’s.
One member offered this advice for those who feel overwhelmed by fatigue: “It is really difficult for others to understand how often someone with Parkinson’s gets tired … My approach is one day at a time.”
Clinicians at Johns Hopkins Medicine recommend consuming caffeine to help alleviate Parkinson’s-related fatigue. As long as it doesn’t create a sleep disturbance at night or cause you to feel jittery and anxious, caffeine can provide a much-needed energy boost when you have tasks that need to get done. However, some doctors warn that caffeine after 3 p.m. is discouraged. Why? Caffeine late in the day usually doesn’t wear off before bedtime, and the lingering jolt can potentially cause insomnia.
Johns Hopkins experts also recommend avoiding alcohol if you experience fatigue. It may seem counterintuitive, but alcohol can negatively affect your quality of sleep. Although it might help you fall asleep initially, it can leave you feeling even more tired the next day.
Talk to your doctor about the medicines you take — all of them. Certain Parkinson’s medications, like levodopa, increase the production of dopamine, while dopamine agonists like pramipexole dihydrochloride (Mirapex) act like dopamine. As one member shared, “My neurologist recently increased my daily dose of ropinirole (Requip) to see if it would help with my left-handed tremor. It doesn’t seem to help, and the fatigue has worsened, especially in the afternoons.”
These medications can be very helpful in managing Parkinson’s symptoms, but if you’re taking them and still experiencing severe fatigue, a higher dose might be helpful. As always, talk to your health care provider before adjusting the dosage of a medication you’re taking.
Although fatigue can make exercise daunting, getting physical activity can give you an energy boost that can last for much of the day. Vigorous exercise late in the day is not the way to go, but some yoga or a brisk walk earlier may be helpful. Try something you enjoy, so it doesn’t seem like too much work — you can even dance to your favorite tunes or work in the garden. Whatever gets your blood pumping and boosts endorphins will do just fine.
Many members have shared their experiences using exercise to combat fatigue. “I tried a number of exercises,” wrote one, “but the two that I found worked well with me were bike riding and swimming. It also helps to have an exercise partner to encourage a person to go beyond the fatigue wall … the benefits of exercise far exceed the downside of fatigue. When I am done riding, I feel exhausted, but an hour later, I feel right as rain. Exercise helps me cope better with the depression, and my quality of life has improved, as well. There is no easy answer except to just do it.”
As another member wrote, staying active throughout the day can help you stay on top of fatigue: “I get tired at 8 p.m. I get up at 4 to 5 a.m. and go to the gym by 5:30 a.m. Work starts at 8:30 a.m. Dinner, cleanup, and chatting with my partner keep me moving … As long as I keep moving, I stay perky!”
Exercise is great, but it’s also OK for you to rest. As one member wrote, “Breaks are essential for your mental health and well-being.” Don’t push yourself too hard, even on “good” days. This can leave you feeling even more energy-sapped afterward.
Napping during the day may also help you get a quick energy boost when you feel fatigued. If napping makes it hard for you to sleep at night, you may want to try napping earlier in the day and aim for short naps. According to experts, both short naps (30 minutes) and longer naps (1.5 hours) can help improve fatigue. Experiment to see what works best for you.
Fatigue can also be a side effect of depression, which can occur alongside fatigue in people with Parkinson’s. Get screened for depression and anxiety, and talk to your doctor about possible treatments. Pharmaceutical approaches (like antidepressants) and therapy can help alleviate mental health issues that are making your fatigue worse.
On MyParkinsonsTeam, the online social network for people with Parkinson’s and their loved ones, more than 93,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s disease. Here, you can meet others who know how you feel, ask them questions, and share tips. More than 2,900 members on MyParkinsonsTeam report fatigue as a serious symptom.
Have you experienced fatigue with Parkinson’s? Did your doctors recommend strategies for fighting or preventing it? Share your experience and tips in the comments below or by posting on MyParkinsonsTeam.