I just returned from a visit with our kids and it involved a lot
of car travel, guest room beds, and not very comfy hotel beds, (we traveled with our dog this time, so the pet friendly hotels had to do), sun exposure, cat exposure (I'm allergic) and just all around extra energy expended. Day 4 - I crashed. Fortunately, my rheumy permits me to take some Prednisone when this happens, and I remembered to bring it. Not sure how I would have managed the remainder of the time without it.
I'm with you, Fran - taking the pred is transforming! It gave me some of myself back, and I loved the energy that came with it. It didn't get rid of all the pain, but it whipped it back into the cage, so to speak. Of course, what goes up must come down. I have felt extra miserable for the past 4-5 days coming off, and I'm quite sure I wasn't a lot of fun to be around, either. I have osteoporosis, so it's not something I can do often. But that was when my "vacation" started - once the Pred kicked in. Up until that time it was more like an endurance marathon - one you have to keep smiling for.
Anyway - it reminded me of how hard it is to keep up with "normal" people. And how much longer it takes me to "recover" from things that don't phase "normal" folks, and how, really, nobody can truly understand it unless they have a personal experience that gives perspective.
I also have pain everyday, and always feel as though something is wrong with me. Management and coping of pain and fatigue and malaise is a daily and ongoing chore and requires limiting activities. Some days talking on the phone is simply too demanding. When it effects my sleep - things get worse. When I'm able to sleep enough and well, it generally improves. So much depends on what's going on physically, stress levels, weather, yada yada. So many variables.
I had hoped that Plaquenil would have had a larger impact on feeling "normal". I take Advil and Tramadol to counter pain - though I don't like taking either. Once in awhile I'll have a really good day with a 2-3 pain level - but regularly, I'm a 4-5. Activity - even the fun kind, especially upper body, ramps it up.
I hope you start feeling better soon.