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PostPosted: Sat Mar 27, 2010 5:46 am 
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Location: Suzhou, China
Hi,
I noticed that after a very long rest, my ms symptoms get worst.
On Saturday, I usually get up late and enjoy a long nap. If I decide after that, to go out for a while, I feel terrible, I can barely walk and I also feel I just want to get back home.

I remember the neurologist telling me “you must get rest as much as possible” Well, I’m not sure about that…

Did you also notice that your symptoms get worst after a long rest?
Thks for your feedback


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PostPosted: Sat Mar 27, 2010 7:39 am 
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Hi Zen2010
I find that if I get up the same time every day in the morning I do best, MS-wise. If I am still exhausted that day I try to have a nap or a rest for about an hour in the middle of the day. If I sleep too long then I do feel more MS-ey alright.

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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.


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PostPosted: Sat Mar 27, 2010 12:47 pm 
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I am just like you Zen2010. I hate it because I love to sleep! I have a real problem with that because I can't even enjoy my weekends to the fullest. I have to keep moving or else ....I time my naps... try not to go over 30 minutes. It is hard because I love to read and that is the same thing. If I read for too long, I get stiff.


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PostPosted: Sat Mar 27, 2010 6:26 pm 
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If I oversleep then I feel worse. CCSVI may explain this in that the jugular veins are relied on more to drain blood from the brain when lying horizontal, and it is they that are most often subject to stenosis.

You might want to take a look into 'inclined bed therapy,' people are reporting good results..

http://www.thisisms.com/ftopict-8535.html


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PostPosted: Sat Mar 27, 2010 9:10 pm 
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Hi L,
I do practice IBT (my bed is raised since a few weeks) but I still feel bad after a long rest. So I guess I’d better avoid long naps :(


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PostPosted: Sun Mar 28, 2010 4:26 am 
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My Nystagmus is always really bad first thing in the morning and eases off as the day continues. I also have my bed raised.


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PostPosted: Sun Mar 28, 2010 5:26 am 
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I've always understood that studies show that too much sleep can actually make you feel more tired, just like not enough sleep does - even for those without MS. Are you sure the effects are "MS symptoms" or just the normal result of too much sleeping? Even for 'normal' people it takes a while to wake their body up after a night's sleep or a long nap. An extended rest - like for an illness or injury - really slows you down and requires you to build your strength back up. I work full time and I've noticed that a lot of the people around me complain more about fatigue than I do.

Personally I seldom blame MS for anything until I've eliminated every other possible cause, so very few of my problems turn out to be due to MS. :) I figured out a long time ago that regular 8 - 8-1/2 hrs sleep is perfect for me and then I rarely need a nap. Too much more (like 9-10) or too much less doesn't feel nearly as good. So I don't do it. I bet it works the same way with non-MS people. :)

Everyone's metabolism is different and each must figure out what works best for them, but I think 7-8 hours of sleep a night is generally accepted as best for optimum restoring of one's body and mind.

The bottom line: I have no idea if too much sleep affects one's "MS", but it never matters to me whether a problem has to do with MS or not anyway. If something doesn't feel good, then I stop doing it that way. :D

Good health and energy to all! :)
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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)


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PostPosted: Sun Mar 28, 2010 5:52 am 
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Thks for your feedback Euphoniaa
You might be right.
I may blame ms every time something abnormal happens:oops:


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PostPosted: Sun Mar 28, 2010 6:02 am 
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Hi zen,

I just decided to look for some research on sleep to see if I could confirm my rambling note, and found a great page of info about sleep research at the Sleep Foundation:

http://www.sleepfoundation.org/article/ ... eally-need

As usual, 'sleep' is a universal concern with pretty much every adult in the world :) , so there's a lot of info about it.

Take a deep breath and repeat my mantra, "It's not always MS...it's not always MS...it's not always MS...." :D

Wishing a good day to all.

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)


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PostPosted: Sun Mar 28, 2010 6:13 am 
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:D
thks


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