When I was younger, I would hear about people having fatigue, and I didn’t grasp the seriousness of the problem. I thought they just needed a nap, and then they would be right as rain. It wasn’t until I got my diagnosis of Parkinson’s disease that my point of view began to shift.
What does fatigue mean?
The best way I can describe it is when I drink caffeine, my mind is still going, but my body is tired. You feel sleepy but have trouble getting enough zzzzz’s to feel rested. Then as a cruel joke, you find yourself having trouble staying awake during the day. You can have mental fatigue, which would be like having brain fog, or you can have physical fatigue, making it more difficult to control your PD symptoms.
Furthermore, I have seemed to have lost my ability to read my body and know when I need to slow down. Typically, you know when you need to adjust your pace, like going up a hill and not knowing when you need to pull over and take a break. However, if I don’t do this, the repercussions are that I could do too much during one day, that it knocks me out for days after. It’s almost like your energy gauge is wonky and not operating correctly.
How do I to combat fatigue?
For me, accepting that fatigue is a very real thing, and it’s not just me being lazy, was important. I used to never stop during the day and take a catnap. It felt like I was letting the day pass me by. But now, knowing that taking a rest can help me get through a day has opened up a whole new world. I even have carved out some time at work to dim my office lights and set the alarm for 20-30 minutes, then doze away after lunch.
Planning my day
Try to leave some available time for breaks throughout your day, but remain flexible. What comes with Parkinson’s is the unknown of how you’re going to feel each day. Some days you may feel like you can run a mile around the block and then plant that new succulent Zen Garden you wanted to do. Other days it might seem like you got up on the wrong side of the bed. If you plan your schedule around resting sessions, you have created that space if you need it.
Fatigue can be apathy
Many Parkies suffer from apathy. I call them the “blahs.” You put off doing things that you know need to be done but lack the motivation to complete those tasks. Those around you might interpret your fatigue as a lack of caring, but that is far from the truth. Remember that apathy’s favorite cousin is depression, and depression’s ugly stepchild is fatigue. Have I lost you? In a nutshell, all three can create a cluster of madness. The important thing to take from this is that depression can sneak up on you in the form of fatigue or apathy. Don’t be afraid to bring these issues up with your Neurologist… they are often overlooked.
Creating a sleep routine
I have a routine that starts at about 8:30 pm. I take my dog Crash out for his nighttime potty, and then I take myself out for a nighttime potty. Oh, come on, I hide behind a shrub… I’m not an animal. Then I make my sleepy time tea and get my PJ’s on. My favorite time of the day. I watch one of my shows on my DVR. Then brush my teeth, crawl into bed, wrestle to get a corner of the duvet from Crash, and read a relaxing book about the zombie apocalypse until I feel the tug of the sandman, and then fall to sleep. You might not have the same routine as me, but you get the point. Setting up sleep time habits helps create a schedule for your body and mind.
Exercise , exercise, execise
You know I was going to say it… exercise helps with fatigue along with its long list of other benefits. I have offically beat the dead horse… what an awful phrase, but I will repeat myself, and I quote,
“What if I told you about a new pill just approved by the FDA that will help your mobility, increase your strength, stabilize your mood, sharpen your mind, decrease fatigue, alleviate constipation and help you sleep better? Have I gotten your attention yet? Then what if I told you that this pill has been scientifically proven to slow the progression of your Parkinson’s disease? I have a feeling that you would be sprinting for the closest pharmacy faster than a herd of snails. This pill does exist, but it’s not taken orally, and it’s not a patch you place on your arm, you can only get this medication when you get up and exercise.” ~The Perky Parkie
I know… I am freakishly smart. It’s kind of unfair. Seeing as my blog is not to give you medical advice, but more to offer my experiences with Parkinson’s disease, I have included a link to a great resource to help manage symptoms of fatigue… {Click here to read a post from the National Parkinson’s Foundation.}
But what have you all experienced with fatigue? Do you notice it impacting your day? How do you handle it? Have you found something that helps?
Hi Allison,
One of my bugbears at present is a kind of ‘social’ fatigue. I am somewhat introverted and so am quite used to feeling depleted by lots of social interaction with unfamiliar people. The problem recently has been recovery time – recently I spent a morning at a busy conference and then felt very flat and apathetic for the rest of the day. Having a nap didn’t help much and nor did caffeine. It felt like a waste of the rest of the day! This sort of dynamic happened two days in a row, which was frustrating, and I felt sad.
Thank you for your article and also the comments and testimonials that your article inspired.
James
I love your blog. It’s so comforting to find a place where people really get it and I don’t have to try to explain why I’m parked on the couch again. I’m most likely going to have DBS this year but I’d like to know from your experience if it had any effect on your fatigue?
Hello Marcie,
Thank you for your comment. It’s kind of tricky to gauge if my fatigue has gotten better because I got DBS 12 years ago when I wasn’t challenged by fatigue that much in the beginning. But now, I feel it much more as my disease progresses. Hope that helps! Thanks for reading!
Fatigue is the worst. Guilty of same previous thinking, I guess they just need a nap. My husband says ‘You don’t take naps. Naps take you.’
I was diagnosed last year with YOPD, and the learning curve has been hella steep. The muscle spasms, the tremor, the somewhat unique views on gravity that my body has suddenly taken, all of these pale when held up against the great beast fatigue.
I can completely relate to the my body’s fatigue meter being wonky. It is nice to see someone else putting into words the frustration of trying to schedule out a day and how all of that planning can be thrown straight out the window because the fatigue truck showed up, rolled through the room and left you dazed and blinking at the taillights. If you’re lucky you recognized the warning rumble and made it somewhere soft. If not, well, sleeping on the floor is a totally normal thing to do, right?
I just found this blog and have had a great time reading through it. Your DBS stuff has been very helpful. I went in yesterday for the ‘So we’re gonna shove wires in your brain’ talk with the surgeon. Little freaked out? Little excited? Ahh? Anyway… thank you for this blog. I appreciate it very much!
Hello Drogers,
Thanks for sharing your story! I’m happy to hear that you enjoy my blog. Good luck with DBS!
Been following you for awhile and YOU make me feel like I’m not loosing my mind. Thank you! Just recently moved to a new state that has lack of resources but I’ve signed up to use a local pool and I’ve entered an online exercise class that will help keep me accountable. I’ve been working on self healing and tiredness has kicked my butt. I do take a nap every day as my body requires it whether I like it or not. I learned that parkinson’s is not up for negotiation on this one. Ha!
Hello Melissa,
Thank you for sharing your story. Hopefully the exercise keeps PD under control.
Hi Melissa,
I’m tight there with you!
Ditto and so true!!
The most important thing I’ve learned from having PD is that I need to give myself permission to nap, go to bed early, decline invites or laze about all day…. and that no one else’s opinion about that matters. I do what I gotta do to get through the day/ week😁
It’s good to know that I am not the only one fighting fatigue. It can really sneak up on me, I’ll feel fine and am accomplishing things and
then all of a sudden it hits, without warning. And often times that will be it for the day – I don’t recover even after resting. Building in rest times during the day helps me a lot, however if I’m feeling good at the appointed rest time it takes some self discipline to stop and rest anyway.
Love your blog and appreciate your humor and words of wisdom!
Hi Peggy, Sounds just like what I’m dealing with! Thanks for sharing.
Remember mom’s observation on why you are fatigued. 😎
Dad,
Because I’m so awesome? That takes a lot of energy, you know!
I wish I had a contribution to this conversation…I so new at this…I am just so grateful for this website…I will know what to expect as I go along…again it’s so comforting to have safe place to go…Allison…for all you and the others on this site have been through of you years with PD…you all remain so positive….Thank you…
Aww, thank you Linda for such a sweet message! Welcome to the Parkie club… you will have lots of shared experiences here.
This is great, and timely. I’m in my mid-60’s, retired, and 4 1/2 years into my PD journey. Most days are good: boxing, golf, walks, you know, normal stuff. And then there are the other days. I was always a workaholic. When I was working on something, be it my profession, a project at home, sports, and my body or mind or both started sending signals that I needed a break, I would push through. I’d feel guilty if I didn’t push through.
Now, pushing through isn’t an option most of the time. When my other selves (I used to hear voices but we’re better now) tell me I’m tired, it’s ok to take a short nap. When a project isn’t finished, it’s ok to finish it another time. My life will not end if I listen and slow down to accommodate the fatigue. I’m getting better at not feeling guilty, but like most of us, I’m a work in progress.
Thank you for this post, it was very timely for me. And thanks for your other posts as well. It’s nice to have someone out there who’s freakishly smart joining me on my PD journey.
Hi Fred,
There will always be work to do again tomorrow. I’m happy to hear that you’re letting yourself rest. I juggle with feeling guilty too, it’s a battle going on in my head. But I can usually give myself permission to not be perfect every day. Thanks for sharing your story!
I began my journey with Parkinson’s 15 years ago and I just had the DBS which has helped enormously. However with improvement came fatigue for the first time. I guess I was a buzz with tremor that I couldn’t feel fatigue but I’ll take the fatigue!
Hi Garrett, sometimes you have to take the good with the bad. 15 years ago… man does time fly.
Hi Perkie,
I too find PD symptoms to be unpredictable. So I try to stay on schedule with meds and mealtimes, then usually naptimes too. Power naps are a problem because it takes a while to recover from them. Travelling this summer has reduced my exercise time, but I still can do zoom groups, just like home. I wake up and do a think positive routine to get started with my before my 1st dose of C/L, knowing that I’m grateful to be what I am and accept the fatigue at another piece of the puzzle..
thanks,
Rog
Hello Roger,
I Love the “think positive” routine. Keep up the good work!
Fatigue is one of those symptoms that is hard to explain, but you nailed it for those without PD who truly want to understand just what a Parkie feels during those times. Exercise has improved Boker’s stamina and work keeps his mind active which keeps the apathy and depression at bay. He still dreads exercise and does it grudgingly, but also understands it is one of his drugs of choice to keep PD under control best we can. Each day is different, so our object each day is to keep him occupied, on track with his meds and to keep him from falling down the Rabbit Hole into the abyss. The better he feels, the less he wants to stop and nap, so if we manage a nap in there each day it’s been a good day! Thanks for your insight – it helps, a lot!
Hi Jaye,
My autocorrect does not like the spelling of your name… it kept trying to change it! It must be too smart for its own good! Ha!
Boker is so blessed to have someone as patient and understanding as you… I know you might not feel like your doing enough, but I can say with confidence that you are an amazing caring partner. You can absolutely feel the love between the two of you. As you say, you can only take it one day at a time and try to judge where his energy reserves would be best used. But the fact that you understand the importance of keeping his mind and his body moving is crucial. Thanks for sharing your story. I will miss you guys on the next hike, it’s on a Thursday at 10:30 am, so I will be at work. Get some steps in for me!
Great stuff as always! Definitely been dealing with lack of sleep which gets my head and emotions in a funk. Great reminder to get my lazy butt moving too! thanks Allison. 🙂
Anytime Allen! Hope you’re doing well!
Allison, very timely subject for me. Over the past few months I have been doing great, although I have always struggled more from non-motor symptoms, specifically fatigue and depression, which you point out are often connected. I routinely engage in intense exercise, i.e. resistance training, cardio, RSB, urban polling, Tai-Chi and competitive volleyball once a week. I initially fought fatigue with a short cat nap, but with all the exercise and diet I found I no longer needed a nap and my anti-depressant med along with exercise pushed away the depression, at least initially. I started a daily dose of CBD @ 33mg once or twice a day after clearing it with my neurologist. For me it helped with muscle soreness, mobility and stiffness. (Anyone that considers trying this should certainly clear it with their personal medial doctor before using it, and I am not recommending it as a panacea. It is a highly personal decision for all). Like Allison I am not a medical professional so I share my story for information only as a personal experience.
So there for a good while I was really a 110%, excellent mood; travelling, even keeping up with my lawn work and household chores. Then came hitting the wall with fatigue, general malaise, poor appetite, feeling bad and depression sneaking in. This reemergence from the dark side happened after I foolishly worked on my outside deck for about five long consecutive days in 90 degree plus weather, stripping, sanding, pressure washing and sealing. Although I tried to remain hydrated, not sure if I did a good job with this. Anyway after this work I felt bad, virtually always fatigued, and it feels like my anti-depressant (Effexor) has quit working. My exercise regimen has slacked off due to general weakness and fatigue. I am committed to working hard to get back where I was. Part of this of course will be consultations with both my GP and Neurologist, as I think my anti-depressant may be needed to be changed (I am already at max recommended dose) or added to by perhaps another med.
Another area I am struggling with is sleep. I had sleep apnea diagnosed circa 25 years ago and have slept with a CPAP every night. I have tried melatonin and the CBD seems like it may be helping me. Early daily activity seems to help. I just don’t seen to be really, genuinely sleepy, even enough to take a nap or go to bed early when partly drowsy. I like your sleep rituals and will pay more attention to that.
I would appreciate any related information from personal experience from our readers and what may have helped with these PD symptoms. I find the worst PD has to offer is the non-motor symptoms and hope to get these addressed.
Thank you again Allison. For sure your Blog proves to me that I am not alone in my quest to feel better from PD fatigue and depression.
Hello Wayne,
It sounds like you were doing everything right and were heading down the correct path, it’s weird that you have hit a roadblock. I’m interested in what your GP and Neuro say. I will send your positive thoughts your way and hopefully, someone else shares their experience that can help you get some more ideas or suggestions. I am happy to hear that you know that you are not alone. Many Parkies are here to listen and share.
I will keep you posted Allison in the hope that my PD experience may help some of our people. You have sure helped me. While I do not give medical advice my personal experience at the very least may prove interesting. I am in touch with my neurologist and primary care physician (PCP) and have identified some viable steps to include possible med dosage increases and/or med augmentation (add-on). I have also benefited from Cognitive Based Therapy in the past so I may take another swing at that. I have been gutting it but I am back in the gym with my wonderful peeps with RSB and group exercise. This is a big mood enhancer in itself. Also I have weaned off CBD, CBN and CBG at least for a while and my nausea has subsided. So far my levodopa/carbidopa continues to work great 25/100mg x2 tabs 3 times daily for a total of 6 tabs in 24 hours. Also noticing little to no nausea with this now. One thing as a personal observation. I found CBD useful for some symptoms but the big questions remains drug interaction and impact on the same liver enzymes which are needed to break down other drugs one may be taking. Also perhaps CBD may possibly amplify or increase the serum presence of other drugs in my system such as Statins which may cause fatigue themselves. Some of the OTC herbs and compounds I was taking also have advertised side effects of fatigue which could be amplified. Also I discovered one can over dose on certain vitamins. I found it important to take personal responsibility for what I drop down my gullet by comprehensive individualized research, especially for Rx and OTC interaction, including food stuffs, e.g. grapefruit juice and fish oil. The FDA has pushed little to no information on full spectrum CBD although there are some basic private studies. It still remains somewhat baffling that I was moving along at 100% in all areas for months and then suddenly hit a wall, although some of the pieces of the puzzle are starting to take shape. I’ll keep you posted Ally and thanks for your “positive thoughts”. Always interested in your experience and insights as well. I’ll be talking in more detail to my neurologist and PCP for additional direction, which is always a good rule to follow by everyone before starting or mixing any Rx or OTC compounds.
So true about the exercise! I am eight weeks out from DBS surgery, and four weeks out from programming. I feel incredible, and have slowly but surely started working on hiking. Where I live, in the foothills of the Rocky Mountains, there are tons of trails, with various levels of difficulty. Hopefully I can get at least five days a week of hiking under my belt. And I really do feel better during the day, And sleep like a rock at night!
Cynthia,
That’s great your DBS is getting you back on the hiking trails! Keep it going!
Hi Allison!
I follow you and read you, but this year (as a teacher of special ed) has been extremely stressful…to put it mildly (i am so grateful to many people who were able to keep me n this planet!). P.M. is really struggling (had the DBS surgery in late August)…Each day is a new start though, right?
As a teacher I have the summer off, so I now that I am home from Cali (to spread my mother’s ashes) I will be trying to streamline P.M.’s care.
Your blog helps so many, including me. I have just signed my kids up so they can start understanding the struggle.
Hang in there “sweet you”…you are very loved and very appreciated!
Oh hello, Jenny! So nice to hear from you. I think of PM often. Peter just sent me a video of us singing, playing guitar, and PM rocking the keyboard. Sorry to hear about your mother. You’ve defiantly had a rough year. I hope you can find some good support for PM. Keep me posted! Thank you for taking the time to comment. Miss you guys!
Right on the money!
Awesome post! I used to feel like I was wasting my time taking naps during the day too but I’ve made peace with my fatigue and apathy. I also found out through a sleep study that I have mild sleep apnea. A CPAP machine made a huge difference for me. I still only can sleep four hours at a time but it’s more quality sleep.
Hello Marcie,
It’s great that you found out about sleep apnea. I know many people suffer from that, but don’t want to seek treatment.
Hi there,
I really enjoy your blogs! Just wondering what kind of exercise routine do you have?
Hi Denise,
I do a weighted exercise class, a yoga class and I met with a personal trainer who does circuit training with me 3 days a week. I also walk my dog Crash for a mile or two every day depending on how I feel. I used to do Rock Steady Boxing, which is a really cool program, but it has shut down due to Covid… a bummer. What have you found to be helpful?
You rock!
Thanks as always for your words of wisdom!
George,
Thanks for the comment!
There…Trying to figure it out…