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Chronic Fatigue Message Board


Chronic Fatigue Board Index


[QUOTE=Serath;4148602]Hi,

I am diagnosed with a connective tissue disorder called Marfan's Syndrome.

The condition consists of a combination of problems such as Arthritis and heart involvement in the form of Mitral and Aortic valve prolapse with regurgetation and so forth.

All of the problems causes fatigue in one way or another so I am constantly out of energy and fatigued. I would sometimes just walk past a bed, at any time of the day and would feel the extreme urge to just sleep. I could sleep the whole day and be rested for a while and then still be as tired as hell come bed-time. Even after a good nights rest I am still tired and I always struggle to get out of bed as I always feel like I still need sleep.

At what point do I listen to my body and sleep. Should I be sleeping during the day on weekends or should I just try to ignore it as I would wake up tired the next day irrelevant of wether I had slept the previous day.

The greatest frustration is that I never have enough energy to do anything but work, eat and sleep.

Any advice??[/QUOTE]
Hi! I'm so sorry you are sooooo sleepy! I can relate, because for the first 5 years or so of my CFS, I just had to sleep all the time; day, night, anywhere, anytime. I would go to visit family and have to take a nap before I came home, I was so exhausted from the energy expenditure.

Finally I realized that my body was telling me something: sleep or die! I'm not kidding; it was a matter of total energy depletion. Of course, I've found out that that is exactly what is going on...with CFS, our energy cells, called the mitochondria, are not working correctly.

I'll tell you this: the sleeping was the best thing I could have done for myself. It helped me heal somewhat, and now I can be active for about 8 hours a day; you know, just doing what has to be done to maintain a home. I do pace myself very carefully, with rest periods of from 15 minutes to 1 hour, doing paperwork, or watching the news, etc., so I am not actually 'active' that whole 8 hours, but at least I am awake!

i say listen to your body and don't worry about when you sleep; when you feel like you must lie down, just do it and envision that sleep being the route your body needs to begin to heal, to the degree it can.

Wishing you sweet dreams, at least, lol...but usually, we with CFS (and it's possible associated virally-induced heart problems) cannot get into deep stage 4 sleep, wherin the body really does work on the healing.

Hoping the new year will bring you strength....





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