I want to transfer how I feel from approx. 11 pm to 3 am to the normal part of the day where people actually expect me to be up and around and normal. I spend so much time up at night feeling halfway decent, and not wanting to go to bed because I feel that it is such wasted "feeling normal" time, and knowing that I will lay there trying to get to sleep forever. Why can't I feel that way from 9am to 1 pm, or during the time when my daughter gets home from school? Those are the times that I really need to be active and energized - but no, I have to get that feeling in the early morning hours when it's just me all alone.
I know that sounds like kind of a silly thing to complain about, but I was wondering how the rest of you feel at different times of the day, and if you've found ways to train your body to be less fatigued/painful during the hours that you could be interacting more with the real world.
Kathy, Hi! It took me about 8 months to "train my body." I broke it into 3 parts. First, the RA meds where I followed the rheumy's instructions to the letter. We fooled around with the prednisone which increased appetite and nighttime activity, such as getting up at three in the morning to cook a meal! Now take 10 mg with breakfast along with Arava and folic acid plux MTX weekly. It took a while but my body finally accepted the pred. and other drugs.
Second was the pain while the long term RA meds did their thing. Tried various pain killers singly and in combination. Suffered nausea, mouth sores, appetite loss, fatigue and all the rest along the way but my local doctor told me to stick with it and those side-effects all went away. Now take one Tramadol and two Panamax at 8.00 a.m. and 8.00 p.m. daily. A little more if needed such as shopping days. This gives me two good (well, reasonable) periods in a day, including a good night's sleep. Often awake pain free which lasts from one to twenty minutes. Then, ouch! Time for breakfast and the meds.
Third was tackling one thing at a time. This meant ignoring foot pain, the nausea etc. while we got cracking on CTS. This has been partly resolved and now it's time for the feet.
All in all, a lengthy process, no obvious short cuts. Like you, I used to get terribly fatigued but not any more - just go to bed earlier than before RA. Hope this helps - kind thoughts to you - DES