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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Comments
Wilfred Baril
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
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".
Jo Claus
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.
Dr. C
How does any of what you have described relate to deep fatigue?
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
Sounds like we have some similarities in the "hard exercise" department. Glad to hear you are putting rest into your weekly schedule.
James Harvey
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.
Dr. C
I hope the column was of some help. Is there anything you do that helps with deep fatigue?
CAROL D GALLO
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
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.
Bean
What simulant helps? I'd give a lot to find something I could take to have more energy! Thanks!
Dr. C
I can appreciate the desire to find "something" to help with the deep fatigue. My experience is that medication doesn't help, and in my opinion, really creates a difficult situation with the body adjusting to an artificial "high" while responding to the PD fatigue. You should have a discussion with your doctor if you think something would be beneficial. I have found that by making time for quiet space and resting usually gets me through the worst of the fatigue. Hope you find the best solution in your wellness.
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Teresa Baker-Carl
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
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.
charles jaggers
I have vascular parkinsons Have walking difficulties so use a mobility scooter and have a permit to take on the buses.
Dr. C
Thanks for commenting on the post. Can you tell us how your issues relate to deep fatigue?
Marcy Giesbrecht
Thank you for your description of deep fatigue. I have experienced this myself. For me it feels like I'm getting the flu, all muscles ache and I am exhausted. I usually have a day of resting and then feel fine. I described it to my primary physician and neurologist and neither had any comments on it. I appreciate your discussion on this. Now I don't feel like I'm imagining things.
Dr. C
Thanks for your post. It always nice to read others descriptions of the phenomena because that increases our understanding of what the phenomena looks like for folks with PD. Blessing to you.
Richard Gaudard
Hi there, I am 64 and have had PD for 5 years. Biggest concern was tremers, usually when stressed or tired. Most of the time I didn't know I was doing it which can be a little embarassing.
As for deep fatigue this has snuck up on me the last year. I thought it was my thyroid and upped my medication but I still feel i'm running on empty.
I keep active mostly walking the dog or taking the grand kids out,but then my legs feel heavey or hollow. I also use a CPAP machine which helped alot for the first few years but not so much now as I am still tired after 8 hrs sleep.
Thanks for you interest.
Lynn
I am 53 and was diagnosed when I was 39. Every day is different, but rigidity, dystonia, back/neck pain, and extreme fatigue are my primary symptoms. I have been told to try to push myself to exercise during the slow times, but usually that does not work. During the times when I feel like a truck ran over me, forcing myself to lie down sometimes helps. I often take a hot bath. Sometimes, the slowness is helped by taking my next dose of meds ( I take Rytary 5/day) early.
However, sometimes nothing helps.
It is so hard to explain to someone who has not experienced Parkinson’s.
Geraldine David
I am 73 and was diagnosed with PD in 2012.it didn't cause me many problems at first, symptoms were mild.things became much harder when, in April 2016 my husband died very suddenly and unexpectedly. Life is much harder without that loving support by your side. The fatigue has been a real problem becoming much worse recently and I also have the huge problem trying to balance the rest and activity issue. After resting I find everything hurts when I start moving, but I can't lie on the sofa all day! I try to do things, but getting really exhausted is often a problem. I would like to find out more about this issue as there must be a physical reason for this? e.g. oxygen/blood supply to muscles?
Dr. C
Hopefully we have medical folks in the readership who can address cause. I agree with you on needing to balance exercise with rest and how that can be difficult. Cant do the sofa all day that's for sure! But also can't be active all day, sometimes not even half a day. I try to take each day for whatever my body will left me do. Getting up to actually do exercise is a problem I did address a bit in the column on shifting perception. But finding the balance is a daily thing. I do more physical things on good days and more rest on bad days. I also have "early warning signs" that tell me when I should stop exercising - like muscle cramping. I am a lot better at heading these warning signs than in my younger years. Thanks for the post - keep u7p the good work.
Wallis Reekie
I am 79 & have had PD for 12 years. In the last 6 months it has become much worse & the deep fatigue has almost taken over completely. Even after a good 10 hour nights sleep I still feel so tired after a couple of hours. I usually have to go to bed around 1pm for another 2 hour sleep. I have always had an active life & this makes me feel useless. I find it extremely difficult even to make a simple meal now. We hear about all the money being invested in PD research but WHEN are we going to see some ACTION! I would willingly volunteer for any tests.
Dr. C
Hi Wallis ~ I can appreciate your frustration. The best course of action, in my opinion, is to take each day as it comes. Don't overschedule yourself. Most of what my columns address are the ways we can each try to take control of our own lives and find peace and acceptance in what we can do. I think the more information you can get will be helpful. Hope you continue to read all the columns here at BioNews Parkinson's News Today for hope and inspiration. We all share the same path.
Dr. C.
Ann Machin
It is 4-40 p.m., and my hwp has been in bed for three hours. When he wakes, he will be concerned about all the paperwork he hasn't been able to do. He seems to be trapped in this vicious circle most of the time these days. He is 72, and was diagnosed six years ago. Prior to his diagnosis, he was going to the gym three times per week, doing circuit training. Now he is exhausted by a short walk in the morning. I appreciate there is a difference between excessive daytime sleepiness and insomnia, but he just can't seem able to get enough sleep. His REM sleep disorder is fairly well controlled by Clonazepam, but he has recently started wandering at night, not knowing where he is. The consultant he sees is a specialist in geriatrics, and I wonder if seeing a movement disorder specialist might be of more help.
Dr. C
Hi Ann ~ We understand what you and your husband are going through. My best suggestion is to keep looking for a neurologist or movement disorder specialist. Often we have found that searching and finding a provider who understands what the patient, and his family, are going through, takes some time. But we feel very strongly about being proactive and not settling for less does not benefit or promote care. Thanks for reading the columns and the BioNews services website. You may find some answers or at the very least support from folks who understand your challenges.
Dr. C.
Pauline
Hi
I feel bad that you have not yet found a good, when you have PD it is imported that you have a good neurologist. I was diagnosed PD at the age of 39 and my neurologist kept changing my medication it took 3 years to get it a fairly good result and still never gave up. My neurologist listens to me and gives my a reason to what is going on with my body, he has now got me on a duo dopa infusion where my levodopa goes straight into my small intestine and I woke up from surgery a new person, dropping my frame eating unassisted able to shower with supervision.
If you live in Melbourne you need to look up Dr Andrew Evan he works from Lennox st Richmond give him try. Good look Pauline.
Dr. C
Hi Pauline ~ Having a great neurologist is such a blessing. Sounds like you and he are good working partners in managing the PD. Thanks for reading my columns and following along with the Parkinson's News Today website. It helps to hear about success stories from the readers.
Dr. C.
Joe B
I'm a 51yr old male, diagnosed last spring and have had symptoms for approx 5yrs. I was always active but didn't really exercise prior to my diagnosis, and would get tired and just didn't seem to have much stamina. Within 3 weeks of my diagnosis I started boxing with Rock Steady, and most recently started kick boxing that is very intense and a great workout. I've dropped 35lbs through exercise and diet (portion control mostly) I'm definitely stronger and can go harder for short periods, but I do still have episodes where I'm just worn out, my legs feel like jello and my brain just says time out. I usually hydrate a lot, but if I get busy with a project that isn't necessarily physically demanding and don't drink as much water I get worn out quicker. Work/break work/break throughout the day and just overall patience with things that take twice as long as they used to is important. Knowing when to stop working means paying attention to your body and not pushing the limits or risk paying the consequences.
All of this boils down to patience and taking care of your body, things everyone should be doing regardless. I know the worst is yet to come, but in a weird way PD has been a blessing. I'm in great physical shape, can manage my symptoms for the most part, and most importantly becoming more spiritual and aware of life. Every day is a learning experience.
Shirley Perry
I’ve done. Lot of reading on Parkinson’s Disease.This morning when Zi awakened I was very weak, absolutely no energy, it was the same yesterday and the day before. I recall before I was diagnosed in 2016 ( by the way I’m soon to be 72 years old) I experienced this weakness/fatigue for about 5 or 6 months, and I was absolutely baffled as to what was going on, even after being diagnosed I didn’t associate the weakness and fatigue with Parkinson’s, This morning I decided to go to the computer again because I felt there must be some logical explanation for what I’m going through. I praise God I came upon your letter and comments. Thank you. They help a lot. I moved to NC almost three years ago from CO. From a medical perspective, I wish I had stayed in CO. Finding a good physician for anything is terrible. I’m here now, Intrust mr relationship with Lord and I pray always. It really does help not to mention my husband and grandchildren help tremendously. So grateful that I found this website. Keep sharing andI will share pray and rest
God bless each of you
Dr. C
Hi Shirley ~ Great comments and many that will resonate with other Parkinson's patients as well as me. I have faced many of the same symptoms and bafflement as my Parkinson's has progressed. And, as you point out, finding providers to understand and support and share information is an ongoing challenge. I have found tremendous support from the BioNews team in my columns addressing these issues you describe. In response to another reader, I will also suggest that finding a provider is daunting. If you are not happy with your provider, then don't hesitate to look for another specialist. Movement disorder clinics tend, in my experience, to have holistic teams who help address patients with Parkinson's. Thank you for checking in on the BioNews site and for reading my columns. Support from readers like you is what keeps me coming back with new columns and ideas.
My prayers go with you,
Dr. C.
Anna
My father was diagnosed with PD at age 72. He was put on Levodopa. A couple of years later I got him to a doctor trained in Tibetan medicine, because I knew it can slow the progression of the disease. He took the medicines 3x a day for 17 years and his Parkinson's barely progressed. For complicated family reasons he hasn't been able to take his Tibetan medicine past 18 months. Short periods of deep fatigue began just a couple of months after he stopped it, and they rapidly increased and intensified the past summer - the same fatigue others here describe. He told me it felt as though he was starting to get the flu, or had been poisoned. Some days he said it felt as though he'd just run a marathon. But it could lift as fast as it came on, and he'd be back to normal. None of the nurses or the doctor in his retirement home had any idea what was going on. He was in good shape (he's 93), exercising every day, eating well, until three months ago. Now he is a wreck, sleeping much of the time. I really wonder what would have happened had he been able to stay on his Tibetan medicine. Since finding this page I finally understand what's been going on with him.
Dr. C
Hi Anna ~ Thanks for sharing your father's experiences. I'm not familiar with the Tibetan medicine you refer to. Can you expand on what this is?
I appreciate your comments and hope you continue to read my columns and check in with BioNews for more information.
Dr. C.
Anna
Kind of you to respond. I was referring to traditional Tibetan medicine in general, which had a centuries-long history in Tibet and was brought to India by the Tibetan diaspora from 1959 on. It has been promoted since then by the Dalai Lama. There are many excellent doctors in north India, but also some in Canada and the States. My father was helped by a (Canadian) doctor in Toronto. His name is Shakya Dorje - he has a nice website with good info. Tibetan medicine is excellent for many chronic conditions. Most of the ingredients in the pharmaceutical mixtures are herbal, and there are no side effects. It can be taken together with Western pharmaceuticals, as long as one leaves an hour between the two. My father's main Parkinson's doctor, who is the head of the Movement Disorders Clinic in Toronto, fully supported my father taking the Tibetan meds. The various Tibetan doctors I've spoken with all agree that Tibetan medicine can slow the progression of Parkinson's. It is definitely worth looking into.
Dr. C
Hi Anna ~ Thanks for the followup. I think this is useful information and one that is often unknown, or overlooked, by Western practitioners. I think it should be of interest to the readers that there are Eastern-trained practitioners that can help with addressing PD.
Dr. C.
Anna
I hope it was clear in my comments, but just to clarify: my father continued to take his Levodopa all the years he took the Tibetan medicine. He took the Levodopa every 4 hours, and it did help calm his minor tremors. He also modified his diet on the advice of his Tibetan doctor. Based on his experience, it seems valuable to integrate both Western and Eastern modalities into one's life.