Parkinsons fatigue

I am still spending half the day sleeping, which is rather depressing, the more I do during my on time which is between 9 and 11, the more tired I become, I sleep after my lunchtime medication for about 1 hour, get up for about an hour and at 4pm when I take my medication, go to sleep again. I have been advised that CBD oil is helpful, but also informed that there is no guarantee, I am desperate to work and have some sort of normal life, has anyone got any advice, and I am particularly interested in hearing from Parkinson’s colleagues that are still working, how do you manage , I get tired getting up in the mornings, I have looked at diet , exercise, but too tired to exercise .

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Marc have you told your Consultant? Perhaps its your medication. I am retired and was diagnosed 14 months ago and I have not had a problem with tiredness.

Hi @marc.

I know you’d prefer to hear from other members which is completely fine, however, I just wanted to chip in quickly. I agree with Margs1, I think you need to consult with your GP about this as it sounds like you’re experiencing side effects to your medication. If you’d like to speak to a professional sooner rather later, one of our advisers can arrange for a Parkinson’s nurse to call you within 24 hours.

Please feel free to call us on 0808 800 0303.

Best wishes,

Get meds checked. Also have a look at “coffee as an aid”. My dad can barely get up/exercise, once he has black coffee with his meds it’s noticeable how much better he is. We experimented with it, he now let’s us know when he feels the need for extra (we also add 2/3 spoonfuls per coffee)

I have been diagnosed for quite a number of years,and probably take a different approach to most of us BUT most friends say I’m much improved over the years with Self Management of all my various symptoms.
If you have had a decent nights sleep then your brain is telling you false information about being fatigued - and you need to reboot it by concentrating it on something I often go dog walking or even go on the pc to take my mind off fatigue
It doesn’t work for everyone-but it usually does for me!.

I’m around 18 months in and I’ve been dozing most afternoons for around and hour, and in my case, usually at a time that’s midway between my Madopar doses, so your timing could be co-incidental. Also bear in mind that another symptom of PD is depression, which in turn can cause a feeling of fatigue.
As for some peoples ability to carry on, a recent TV program featured a lady PD farmer who attends County Shows, entering her (I think it was) pigs. Lots of preparation, lots of driving and no doubt a stress full environment, and I thought the same - just how does she manage? Turns out Hubby takes over and she has an hour’s kip in the car, so things are’nt always as they seem!
So if you need it, take it, but I would try and limit it to one doze rather than two.

I quite agree about sometimes needing a doze .If I start a trembling session I can often have a doze and it seems to reboot my brain to stop the tremor.The main point is that you have to control and train your brain-and NOT let it control YOU!
Have you tried Mindfulness? It certainly works for me!

Hi Phil,
Thank you, I have tried to limit it to one period of rest, but I am out for the count and it is a really deep sleep, I have tried to work through it, but not working, I am looking at my diet which is generally good, my exercise routine.

Hi thankyou for your reply, I have tried to work through it, by doing things like house cleaning and gardening or exercise bike, but it makes me feel really bad, and try and eat a balanced diet and exercise.

Thankyou for your advice, I Have tried coffee, but I still feel tired , I have a cup about 9 in the morning, and if I sit down will go to sleep, I have to get out , because just getting up and morning routine, exhausts me.

You may need to add more spoonfuls of coffee per cup. Dad has 4/5 per cup. He takes it first thing in the morning before doing anything, then 8am, 10.30/12pm, 4, 6pm and if necessary an extra in between. Dark roast, no milk (it seemingly detracts from effect). He takes 3 of the times are with his meds.

We experimented to see what helped best. He is going to be 80 in Oct. Good luck. We look forward to seeing updates from you on your journey

Have you found anything to help, Marc? My husband is exactly the same: desperate to work and sleeping his days away, He is finding it all very stressful, which isn’t doing a lot for his PD. I try to make sure he walks for half an hour most days, but, like you, he is too tired to exercise any more than that. His consultant is more concerned about physical symptoms, which aren’t actually troubling my husband too much, but this fatigue is badly affecting our quality of life.

Hi Marita,
no real improvement, I am trying to get on with things, but still sleeping a lot, I do get out for a walk most nights when the wife comes home from work, it is real struggle sometimes, I mentioned that I was concerned about the lack of exercise and the physical symptoms on my last review , with my consultant, I am trying a new medication, but concerned about side effects, one is it causes sleep, it is the same problem I totally get where your husband is, and you, I have to drag myself along, to walk and do chores, I wish you all best.

hi marc,
im no doctor but have been through similar times, i know we all react to meds different but sounds to me like your doc might need to adjust your meds, dont give up it takes time to work out what gives the best results.

A new book called Why We Sleep by Matthew Walker It include 12 tips for a good nights sleep.