Deep Fatigue Is More than Tiredness

Deep Fatigue Is More than Tiredness

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.

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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.

(Graphic by Dr. C)

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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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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I am a retired professor and research scientist along with being an artist, philosopher, writer, therapist and mystic. I am also a husband, father, grandfather, master gardenerand Vietnam Vet. All of these roles influence how PD interacts with my life's journey.

15 comments

  1. Wilfred Baril says:

    For me PD deep fatigue is a crushing tiredness both mental and physical. I have no pain and the onset is primarily due to missing a medication window due to forgetting a medication dose, or a change in activity intensity or timing. I am most successful avoiding deep fatigue or other “off” periods when I follow a regular pattern of medication, nutrition and exercise.

    • Dr. C says:

      It is good to hear that the steps you describe (similar to those in the column) can help with deep fatigue. I like the phrase “crushing tiredness”.

  2. Jo Claus says:

    hi dr c, i am jo claus,male, 50, from belgium, I have PD for 26 years now,
    i’ve got 2dbs machines inplanted andi have my up and also my downs, my daily medecines
    are 1 g of artane, 2x 100mg amantadine, 1 big pill magnesium; 1 pantomed (stomach-protector)40 mg.

  3. Jean Mellano says:

    Dr. C, thank you so much for this article. I suffer from tremendous fatigue (no rest can seem to make me feel better. I often wonder if my fatigue is worse because I do too much exercise. Some times i feels as though I exhaust my dopamine stores for the day after an intense workout. It is not in my nature to back off as I have always been a dancer and athlete, used to pushing myself. So much is written about how high intensity exercise is good for PD symptoms. Today, I am not exercising, just 20 minutes of stretching and yoga. Hopefully this will make a difference for me so I can do some exercise tomorrow.

    • Dr. C says:

      Sounds like we have some similarities in the “hard exercise” department. Glad to hear you are putting rest into your weekly schedule.

  4. James Harvey says:

    Insomnia and fatigue are my two most bothersome PD symptoms. I was diagnosed with PD about 3 years ago. Today I did about 3 hours of easy walking going door-to-door for political canvassing. When I got home I was exhausted and was still exhausted after lying down for an hour.

  5. CAROL D GALLO says:

    I find stress and happiness levels attribute to much of my lethargy and apathy. I also find that if there is a rhythm to my daily schedule I do so much better. The happier I am the better I do. I definitely try not to let those negative thoughts in or I would sleep the day away. My pcp gave me a script for a stimulant which works great so that I am not trying to hang on to completing my daily activities by my fingernails. I especially use it when I have afternoon appointments. This article is great.

    • Dr. C says:

      Stress and what ever state is counter to that – you say happiness, I call it centeredness – definitely relate to deep fatigue. Lethargy, I think is something different. I will have a column on this very soon. Thanks for the praise. It helps keep me writing.

  6. Teresa Baker-Carl says:

    Hi, I am a 65 year old woman with PD for 40 years this month. Pain and deep fatigue are the 2 worst symptoms for me at this point. I have been diagnosed with Autonomic dysfunction and I am wondering if that contributes to this overwhelming fatigue. Also, stage 4 CMS has left me anemic. So I have a neurologist saying more exercise, and nephrologist saying more rest. How do I balance the 2?

    • Dr. C says:

      Personally, I find that a balance between exercise and rest is a decision I have to make every day. I never know for sure what kind of day its going to be. On good days I can get more done, bad days less, and on those ugly days I have to put in more rest. I will do a column on developing an exercise plan, but it is something that is very personal. It has to fit you like your most comfortable pair of shoes.

  7. charles jaggers says:

    I have vascular parkinsons Have walking difficulties so use a mobility scooter and have a permit to take on the buses.

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