Fatigue is a symptom commonly associated with Parkinson’s disease (PD) and one I experience more often each year. The term “fatigue” alone does not do justice to the experience. It is too easy to relate fatigue to being tired or overworked, or to muscle aches after hard physical labor. I have had those experiences and none of them compare to PD-related fatigue. I’ve needed a new way to define this different level of fatigue. Thus, I have adopted the term “deep fatigue.”
Deep fatigue is different in its intensity and its incorporation of nonmotor symptoms. Deep fatigue involves every muscle, sometimes even involuntary ones. They are all tired and weak, and in my case, also in pain. If I have been exercising, then those muscles groups will have a higher level of pain. In deep fatigue, it is common for me to have pain levels at six or seven. (I associate level seven with spontaneous tears.) At the same time, emotions become much more intense, almost overwhelming, and difficult to manage. Mental energy is used to manage the pain and the emotions, leaving little energy for anything else.
My duration of deep fatigue is slowly increasing each year. Presently, my deep fatigue lasts between one to six hours. It’s like dragging a ball and chain during those hours.
These things seem to make deep fatigue worse:
- Exercising too hard or too long
- Eating too much animal protein, or too big a meal
- Not resting when needed
- Getting overheated and not hydrating
- Being overly stressed
- Being sick with a virus
- Missing a levodopa dose
Obviously, avoiding the above is part of my rehab plan for dealing with deep fatigue. Rest and sleep are VERY important.
I am a very active person, but deep fatigue must be addressed with rest. Taking a day to rest is not in my nature. It makes me feel like a sloth. Yet, when deep fatigue hits me, the best remedy is to do just that — take the day off! I limit myself to one day of physical rest, very rarely two days (usually following some stressful event). I also find that the mind must rest with the body. Getting the mind to a quiet place is the practice of meditation, in whatever form suits the moment. At the height of deep fatigue, meditation can be very difficult, but not impossible. At times, it has taken me four hours to quiet my mind and body to get rejuvenating rest.
But there is a caution here: Be wary of using rest as an excuse to procrastinate. In another column, I’ll address the link of scenario looping to set-shifting issues and difficulty initiating new tasks. Basically, getting off the sofa can be problematic if I stay there too long. Perhaps this seems contradictory to my history as a highly active person, but that is the nature of PD’s nonmotor effects. Once off the sofa, I make myself shift into a physical task, followed by a short rest and then some type of mental task. There is always some resistance to overcome to do this — to get off the sofa — but the rest is absolutely necessary to stop the deep fatigue.
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