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Parkinson's and Extreme Fatigue
marymc0903 posted:
I am 47 and diagnosed with early stage Parkinson's last spring. Slight tremor right hand, internal tremor, constipation, memory issues, some slowness and joint pain. The most debilitating symptom I have is fatigue. I have been "tired" for 12 years now, as i have had Graves disease. My stamina has always been an issue. However, I now nap almost every day and am having several monthly "bouts" of extreme fatigue. The extreme fatigue keeps me at home because I feel so exhausted I can't even drive safely. It is kind of like the feeling you have after driving for 10 hours straight and are fighting to keep your eyes open. My eyes are often bloodshot during these "episodes" and a sometimes have a headache. 2 neurologists have said this is not typical of Parkinson's. Graves is stable, no depression, sleeping well. Any ideas or experience with this?? Thanks!
rjj48 responded:
My husband is the same his doctor said the maripax that he takes 3 times a day is what makes him so tired. As soon as he sits in his chair he's a sleep in seconds.
marymc0903 replied to rjj48's response:
Thanks for your response. I have heard that can happen. however I am not taking any meds at this time. I am so frustrated with my body. Prayers for you and yours.
lovedogs1955 replied to marymc0903's response:
I was officially diagnosed with PD 5 years ago, but had symptoms long before. They weren't obvious ones, but looking back they were there. I was also diagnosed with metastatic breast cancer in '02, so the treatments left me very tired and also with memory problems.

Back to the fatigue....I have to pace myself everyday, taking naps whenever I feel like I need to. I am not able to tolerated the Parkinson's medications, so we are just treating the effects that bother me the most, which are neuropathy, pain, and anxiety. My husband and family are able to recognize the tired look that I get and often know before I do that I am about to hit "the wall."

PD is very frustrating and very personalized. None of us will experience the exact same path, but we may have similar ones. Stay tuned to this community---it has been a HUGE help for me. I wish you the very best!
worn1 responded:
I hate to tell you this but fatigue is common amoung Parkinson's patients. If you google Parkinson's and fatigue or dopamine and fatigue you will find quite a bit of information.
I have problems with sun light putting me to sleep so I use sunglasses. When I first started on meds the fatigue was really bad until my body adjusted.
I was working nights which was ideal for me but the neurologist and my husband were unhappy. So I switched to days. Wish I hadn't. I now sleep 8pm till 1:30am. I am tired and cranky all the time.
There is so much that science does not know about Parkinson's. Some of the Doctors go by book knowledge only innstead of listening to their patients. If they would listen they might learn something. Dr Stacy Listens.
My one piece of advice is if it works for you do it. For instance I use a treadmill. I started on the treadmill before it was ok to do so. In fact my neurologist wanted me to stop. What she failed to realize is I felt better and had more energy and ease of movement. Science has also discovered the bicycle works. I used a stationary bike since I have no sense of balance. keep a log of when you are fatigued the most and what you were doing. ie. for me it is light so hence the sunglasses.
There are none so blind as those that will not see
worn1 replied to lovedogs1955's response:
have you tried the tandem bike? I know before I started meds the treadmill and stationary bike worked wonders for me. With the tandem bike someone else pedels but the end result is the same.
There are none so blind as those that will not see
marymc0903 replied to lovedogs1955's response:
Thanks so much for your response. I like how you mentioned the "look" before you hit the wall. I always can tell too. My face looks tired and my eyes seem glassy and bloodshot. I know i am not crazy and believe this is from my PD. Thanks again for your encouragement.
marymc0903 replied to worn1's response:
Yes, i know it's a fairly common issue. I am finding more and more variations as i talk to folks. Thanks for the suggestion to stand by what works. We are the only ones that can live our lives. I am planning on a recumbent bike too. Thanks again.

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