Fatigue... Is it caused by Parkinsons or by lack of sleep?


#1

Fatigue... Is it caused by Parkinsons or by lack of sleep?

Anyone have an opinion.

I sleep badly because of the Shake and because I find it hard to relax enough to drop off . I tend to wake up in the middle of the night and I actually get up can find things to do . It doesn't bother me that muchon the scale of things .

But I wonder ,  is the fatigue  that I ( and many PD sufferers ) experience occur as a result of  that lack of sleep or is it directly caused by Parkinsons ?

 

Any opinion ?

 

xAndy (aka Ojalahey)


#2

I usually sleep ok but still suffer from severe fatigue. Some days I feel quite well when the fatigue suddenly hits me and can last for days. Its by far my worst symptom and its an effort to do anything when it happens.

I would be interested to hear how other people cope with fatigue.

 


#3

ta for reply Bluebarb ,   sounds like its a PD symptom for u.   I cope with fatigue by

a/ Only working part/time

b/ Usually working from home , so I dont have to commute or look wide-awake , can even take a nap in my lunch hour

c/ When I go out use my own transport so that I can leave when I want .

d/ Dont gop to places where the vibe is too excitable

e/ Avoid people who have to live to the max, people who arent very good at listening and with whom u  have to struggle to get a point across.

f/ Try to take it easy when I'm tired , or find less energetic ways of being like reading .

 

These are some things I try to do tho' I get frustrated by fatigue at times !

rgds

Ojalahey/Andy

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#4

Good afternoon Andy & Bluebarb.

It's difficult to identify the cause, is it the condition that makes us sleepy or the medication?

I am on Ropinirole XL which can Zomby me so I usually kick start myself into action with a couple of mugs of Columbian Coffee, this of course doesn't help my tremor!

Most of the medications cause tiredness during the day and consequently I have read that some peeps postpone taking meds (DA's) until the evening, I don't know if any Docs or Neuro's would agree to this?

Would be interesting to get opinions on this?

After all, Meds are prescribed to help us function with the disease and as far as I  know there are no drugs to delay or postpone the advance of Mr Parky ( so we may as well take the drugs while we are active!)

My personal view of things to take some exercise every day even if its just a short walk and keep to a regular bedtime.No reading or tv in bed  its a crashpad :-) as long as I get 5 or 6 hours I am grateful, any more is a bonus

Hope this may be of help and I wish you both well

Beano


#5

Hi beano

i have also been wondering about whether tiredness is part of PD or wether it can be managed.  I realise that lack of sleep definitely has an impact and there have been a few nights when for various reasons i have not been able to go to bed at my preferred time which meant that i managed to get a second wind but suffered from bad insomnia as a result.  This has the predictable effect the following day.  I have also found that having a drink of red wine, no  matter how small a glass has a similar impact in that i often feel wide awake resulting in a bad nights sleep.  I have experimented with when to take my meds ( MIrapexin) and at the beginning took them in the evening as i was getting those overwhelming feelings of tiredness.  However now I take them in the morning and I seem to have got used to them as this has not been an issue unless I have had a bad night previously. I also find that exercise does give me more energy but i realise that you can do too much when you are feeling energised which results in over tiredness.  So my current plan is to try and pace myself during the day, get some exercise and have a regular bed time.  Of course life intervenes so flexibility is the key.  I also remember how fatigue was just part of life when my three children were babies we just had to get on with things no matter how little sleep we got.  At least now i can put my feet up and close my eyes for 15 mins if necessary.  I do find that if i have things organised to do I just push on with them even if i am tired but if i have a quiet day at home tiredness seems to be more of an issue so I try to keep busy.  I think we all have different experiences so I need to try and work out what is best for myself and my circumstances. It is still a learning curve!


#6

i used to sleep very well in bed at 10pm up at 7am , but the last couple of years or so i find it extremley difficult to drop off to sleep and most night i find myself still awake at 3am when i do finally drop off i am awake 3 hours later for the obligatory bathroom visit then try to get back to sleep for a few hours which results in me being tired during the day , i think it is more to do with my last dose of meds have wore off by the time i eventually do get to sleep so i have a uncomfortable nights sleep , neuro suggested a fourth dose of meds and a short course of zopiclone


#7

I find I can get off to sleep quite quickly but I wake in the early hours to go to the loo and can't get back to sleep again, which explains why I am writing this at 4.40am, having been awake since before 3am.  My sleep problems started two or three years before I was diagnosed so I am thinking they are due to the PD rather than the meds. 


#8

I have found fatigue to be a real problem for me possibly prior to diagnosis and still now. I remember feeling like Id hit a brick wall, and this was before I was diagnosed, so part of me wonders if it is part and parcle of PD.

The problem is it can come on at different times, anytime for me does not necessarily occur after a physically or mentally busy time and that's a quandary.

Fore example I work 2 days a week, 5 hours each day Tuesday and Wednesday, so possibly thoughts would be Tuesday would be the better day from having a work free day before but not so this week.

Tuesday came home and went to bed just so exhausted I was not steady on my feet, dizzy felt sick and just wanted my bed now Wednesday I was full of beans (well almost) and even felt ok after work.

Next week will be different again I am sure so in my case I dont think you can ever plan too much its always a wait and see game and I no longer think well if I dont do much today I will be ok for a special event the following day because it never seems to work.


#9

ive been on zopiclone sleeping tablets for a while now and there great ! no more sleeping problems and wake up great & fresh


#10

For me, it's definitely a PD symptom. Like Newdidit, I was fatigued before dx, so for once it's not the meds. I'm also sleeping quite well at present - but I can still hit that brick wall of exhaustion. And first thing in the morning, too!

S


#11

I'm like Newdidit,  I find It can come on without warning and not necessarily as a result of doing too much. Some days I'm full of energy, then the next few days its a struggle to do anything. I don't know whether to rest or try to carry on as normal.


#12

i would say if your doing to much one day your using all your meds up,when your not over doing it your meds are ok dosage! 


#13

I wrote about my struggle with fatigue some time ago in my blog (see    http://wpgchap.blogspot.ca/2011_09_01_archive.html).  It was a real problem at the tlme but it has improved somewhat.  I too take zopoclone at night.  It helps put me into a deep sleep but I still feel a bit fatigued during the day, but no longer at the "cellular" level.  My conclusion then, and it remains,  the severe fatigue I was dealing with was the result of both PD and the mirapex I was taking. However, like many of the symptoms I have encountered, fatigue seems to come and go.  Right now it is about 4 on a scale of 10.  Exercise helps.  Avoidance of stress is a necessity.  Good luck.


#14

alot of the problems is for people who can not sleep at night,is taking there meds to late at night as pd meds awakes the brain keeping it active & alert, i would try playing around with your time of last dosage or take slow release at night.but i do myself take zopiclone & amitripyline which helps for nerve pain also as well helping you sleep!


#15

I am having really bad sleep problems or should i say lack of sleep problems,If i sleep 3 - 5 hours continuous then thats a really good night.....its also very rare

Its now 4-20am and i havent slept at all yet not even for 5 mins. I can never cat nap during the day to catch up

My GP refuses to prescribe any sleeping tablets. I was ref for counselling last November2013 after being assessed and agreed to try it.............i am still waiting.

I have had the sleep hygiene etc from Occupational Therapist but didnt produce any change

For me the sleep disturbance i think is definately due to the PD, it is also getting progressively worse

it is not at all affected by how busy/active I am. Some nights i just cry because I am so tired but am still unable to nod off or if i do then i awake 20mins later and thats it,

Sorry to moan on... im not a miserable person though i do sound like one :) Anyway i have an appointment to see a consultant at a new hospital today 11am and hopefully i will be able to get some help. Even a short course of Zopiclone would be some reprieve. BTW ive been diagnosed for 7 years but actually had pd for approx 12-14 years.

cheers

Angel


#16

Wow you are lucky :) my GP will not prescribe them


#17

There is a interesting talk about fatigue and sleep problems in PD on this website http://www.pdf.org/en/parkinson_briefing_sleep_fatigue You have to signup to access the talk.


#18

Angel

 

Your sleep issue sounds bad.

Can I suggest u get up and do something when u feel like this,  if i lie there for 30mins with no sleep I get up , go downstairs and do exercises, housework, listen to my Spanish dvd , the radio or something else . Thta way I have some fun and get tired at the same time .    I choose things thta involve physical activity and if thye dont (like listening to the radio) .. I walk around the room chucking a juggling ball from hand to hand to make sure I get some physical going ... after 1 to 2 hrs I go back and sleep better.    Thta way the lack of sleep doesnt get to me so much ... you can get obsessed with not sleeping ,  I find the solution is to accept it and use the time,

the pattern might not be permanent (I sleep thru more ften now) adn you can get too wound up about it .

 

Andy(ojalahey)


#19

My experience is very much the same as Angels , i have major problems falling to sleep and it can quite often be 3 or 4am when i finally nod off then it is only usually for 3 or 4 hours  , i do get awfully tired during the day and i guess ia am lucky in the fact i can have a nap during the day

My gp did prescribe 14 days of Zopiclone but he made it quite plain that he wanted them to last 6 weeks  his suggestion was take 1 then miss a couple of nights etc

I had the sleep hygenie pep talk from my neurologist to , his exact words were bed is for two things eek


#20

i had a right go  many years ago at  my nero & gp and have been on zopiclone for 5yrs,have you tried amitriptyline for pain & also helps sleep.gps do  not mind so much giving these out !