Hi Godslyric, I haven't suffered long enough to maybe understand your situation but I haven't been in full remission for UC for two years now and I want to share something similar.
I got discharged from the hospital a little bit more than two weeks ago and I was put on heavy dose of Solomedrol then started 60mg of prednisone. My GIs even discussed the possibility of surgery b/c I'm not responding to prednisone/steroids.
I lost more than 30lb on this flare. I'm still not in full remission but as for the CFS, I think exercising is the key.
I was sleeping due to CFS so much and kept saying, "I can't exercise because I have no energy or I have UC symptoms", but I knew I had to do something. I had low grade fever at night and night sweats everyday. I couldn't even go up the stairs because I would get cramp from muscle weakness due to steroids.
I started doing standing still walking exercise and gradually moved up from getting exhausted in 3 minutes to 30 minutes at a time. I was breathing really hard and sweating so much.
It's really hard if you actually try it at first. Arms swinging back and forth and walking in one position. Thighs up parallel to the ground.
In a few weeks, I'm speculating that I will be ready for real walking then running.
It sounds absurd but seriously, I stopped having night sweats and low grade fever after a week doing this.
I don't think any medications can fix this up for us.
It's REALLY tedious to do it for more than an hour a day but I do this with this mentality. "If I don't do this, I could die"
I'm less tired after starting to exercise. I can digest better. More appetite. Less pain.
Just a suggestion. Staying still and taking meds for this won't help IMO. Hope you find your answer for your CFS.
And watch your diet for UC if it bothers you. In the end, we are really what we eat.
21 male, NY
-Dx Pancolitis in 2008 Jan
Recent hos. discharge on 5/23/11
-90min cardio exercise everyday
- On Pentasa, 40mg Prednisone(tapering from 60), Canasa(every two days)
-No HFSC, sugar/preservatives/additives, red meat, chicken(bloating), shrimps(antibiotics), non cooked veges
-On white rice+meat/mackerel+avocado+blueberries+homemade yogurt
-stopped all supplement/vitamin