Guest guest Posted April 30, 2009 Report Share Posted April 30, 2009 The only thing I do is if I feel the exhaustion I don't fight it I take a nap or sleep as long as I need to. That's why I'm here at 3:40 am.Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Subject: exhaustionTo: Neurosarcoidosis Date: Wednesday, April 29, 2009, 2:07 PM For the past year or so I have been suffering from increasing exhaustion. It has gotten to the point of being difficult to get up and move at all. I'm usually quite bouncy and energetic, during my good periods, that is. One doc says it's the disease. Another blames long-term prednisone, that I am suffering from low cortisol levels. We are trying to adjust the pred. so my dosages are more even, but so far, no help. Anybody else having severe exhaustion? Any suggestions out there? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2009 Report Share Posted April 30, 2009 Dawn Good luck with your new treatment!Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Subject: Re: exhaustionTo: Neurosarcoidosis Date: Wednesday, April 29, 2009, 2:25 PM Hi! I too suffer from extreme exhaustion- things just take way more energy than they did before I became ill with sarc. I have been on high dose prednisone since Dec. 2008. We tried to wean down the dose with no success- I had a severe relapse and had to bump the dose back up. My doc started me on cellcept last week. His plan is to increase the cellcept while decreasing the prednisone. I hope I can get off the pred- the side effects are horrible. I also think it has added a little depression to the equation, increasing the severe fatigue I face each day. Hopefullt the new med helps with this and my sarc symptoms. I hope they are able to help both of you with your fatigue! Take Care!Dawn> > From: wendy_cidp <wendy_cidp@ ...>> Subject: exhaustion> To: Neurosarcoidosis@ yahoogroups. com> Date: Wednesday, April 29, 2009, 11:07 AM> > > > > > > > > For the past year or so I have been suffering from increasing exhaustion. It has gotten to the point of being difficult to get up and move at all. I'm usually quite bouncy and energetic, during my good periods, that is. One doc says it's the disease. Another blames long-term prednisone, that I am suffering from low cortisol levels. We are trying to adjust the pred. so my dosages are more even, but so far, no help. Anybody else having severe exhaustion? Any suggestions out there?> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2009 Report Share Posted May 1, 2009 I can sooooo relate!! I have fallen asleep in mid sentence, face first in my dinner plate, asleep at my desk & literally while eating. Food in my mouth & all.. Yes I have even fallen out of my chair & off the toilet. My blood sugar is ok & so is my thyroid. I found this wonderful article that expresses very well the issue of exhaustion. You will find it here www.butyoudontlooksick.com/the_spoon_theory Moving the elephant out of the way before each step of a task is sooooo true!!! Even when the exhaution improves it seems like it never really goes away. Remember that Pred. can cause Diabetis which can also affect your energy levels. Make sure your Dr. keeps a close eye on your blood sugar. It sucks when you have to rest up to sleep. Thanks very much for addressing the issue of exhaustion. All this time I thought I was alone with this symptom. Carol Quote Link to comment Share on other sites More sharing options...
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