Guest guest Posted April 29, 2009 Report Share Posted April 29, 2009 , Like you, I suffer from extreme exhaustion. I'll be seeing an endocrinologist the end of May to see if this is adrenal insuffiency. I suspect it is. What happens is that our bodies have been given so much prednisone-- which blocks the adrenals ability to make cortisol-- the bodies own prednisone, and then as time goes on-- whether we stay on pred or not-- the adrenals get so fatigued, that they can't produce of process any more. The adrenals control your heart rate, your hormones, your energy levels via glucose and other hormones-- and you end up wiped out. I know the fatigue way too well, it isn't that you're tired-- it isn't like you have the flu, it's like everything you do requires you first move the elephant out of the way-- so that you can take a nap so you can make the next attempt at putting the next sock on. Damn, I hate this disease. Hugs, Tracie NS Co-owner/moderator Subject: exhaustionTo: Neurosarcoidosis 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 April 29, 2009 Report Share Posted April 29, 2009 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 > > > Subject: exhaustion > To: Neurosarcoidosis > 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 April 29, 2009 Report Share Posted April 29, 2009 , Tracie has already explained the exhaustion to you. So all I will say is you are not alone in being exhausted. All of us on Prednisone have feelings of exhaustion. Just know you are not alone. Greg > > 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 29, 2009 Report Share Posted April 29, 2009 Thanks for the replies. Tracie, you explained it so well. I'm going to show my internist when I see her next week. I have to get geared up just to take a shower, then I have to rest for an hour or two. Many days I skip a shower and just sponge bath so I have the energy to get a few small chores done. This is nuts! If it is a cortisol issue, can they do anything about it? I am on the lowest dose of prednisone I can go on without symptoms. They are trying to spread my Remicade treatments out first. When I'm on a dose every 8 weeks, and stable (we hope), then we'll try weaning the prednisone again. It all takes so much time. Small baby steps. But this baby is getting so tired... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2009 Report Share Posted April 30, 2009 , I think that what they'll need to do is get your Remicade infusions closer together rather than have you going each 8 wks. That will probably lhelp. How long after an infusion before you feel like you need another infusion? What kind of relief do you get from the infusions? I know for me, I hit a real high place for a couple of weeks almost immediately following the infusions, but this is week 3--and next Wed will be the next one. So by Friday or Saturday, I'll be starting downhill. For me, the Remicade does seem to help my sarc-induced arthritis, the brain fog, the exhaustion and fatigue for a very short few days-- and it seems to be keeping the pericardiitis (inflammation of the heart sac) at bay. Those last 2 or 3 days before the next infusion-- I can tell a huge difference. Go to www.sarcoidosissharma and print out a copy of Dr. Sharma's questions and answers on sarcoidosis. I know he talks about the fatigue issue as being one of the biggest problems that has to be addressed. I know that the docs think that pred gives you that wonderful sense of wellness and energy-- but when they have us spend years on it-- the opposite becomes true. It becomes the very thing that is most exhausting. I"m still trying to find some good articles on adrenal insufficiency, and learn about it myself. I'll look in my "favorites" and see what I've got there. I do hope that your MD has you on Folic Acid 1mg daily. That does make a huge difference, and the meds we're on wipe out the Folic Acid (Vit B12.) The over the counter stuff doesn't cut it-- you need the prescription grade. If you do a search-- use "sarcoidosis and fatigue" or sarcoidosis and exhaustion" as well as "sarcoidosis and adrenal insufficiency". I've done a few posts, and sent a few links to articles in the MESSAGE ARCHIVES. I'll be doing the same tomorrow, if I can settle myself down and get online when I'm more together. I'm struggling this week I think in part because of the death of a dear friends sister due to brain cancer. The woman that passed away is the same age as me, and it has hit me hard emotionally. That and I just found out that 3 of my heart valves are screwed up, and there's not much we're going to do until it's become a full-blown crisis-- and it's either operate or die. I'm not sure I want the operation- so my cage is rattled. Take care, Tracie NS Co-owner/moderator Subject: Re: exhaustionTo: Neurosarcoidosis Date: Wednesday, April 29, 2009, 8:40 PM Thanks for the replies. Tracie, you explained it so well. I'm going to show my internist when I see her next week. I have to get geared up just to take a shower, then I have to rest for an hour or two. Many days I skip a shower and just sponge bath so I have the energy to get a few small chores done. This is nuts! If it is a cortisol issue, can they do anything about it? I am on the lowest dose of prednisone I can go on without symptoms. They are trying to spread my Remicade treatments out first. When I'm on a dose every 8 weeks, and stable (we hope), then we'll try weaning the prednisone again. It all takes so much time. Small baby steps. But this baby is getting so tired... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2009 Report Share Posted April 30, 2009 What over drugs are you on? I know that all three of mine has side effects of exhaustion. I am on Pred, Iurman, and Lasik. I am hoping to get on Remicade soon and get off this PRED. Wishinng the best Greg > > Thanks for the replies. Tracie, you explained it so well. I'm going to show my internist when I see her next week. I have to get geared up just to take a shower, then I have to rest for an hour or two. Many days I skip a shower and just sponge bath so I have the energy to get a few small chores done. This is nuts! If it is a cortisol issue, can they do anything about it? I am on the lowest dose of prednisone I can go on without symptoms. They are trying to spread my Remicade treatments out first. When I'm on a dose every 8 weeks, and stable (we hope), then we'll try weaning the prednisone again. It all takes so much time. Small baby steps. But this baby is getting so tired... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2009 Report Share Posted May 6, 2009 Wow Carol, thanks for sharing that website, I have the pamphlet, but didn't know there was a website too. Marla 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.