Hi all you amazing people who respond to the likes of me and my issues. One thing that's keeping me sane is I keep a diary / log. I colour code morning, day, night (red, yellow, green) and look for patterns in pain.
Driving, travelling in confined spaces, carrying shopping, sitting to long on hard chairs all look to be precursors whereas walking , lying down and floating on water helps. I am thinking of looking at my diet along side this as I have a very nasty feeling red wine doesn't help me very much!!
Newly diagnosed in Dec 16 I was on 20 mg initially and cut to 15mg after 3 weeks. Saw my Rheumatologist Jan 23rd who wanted to reduce me to 12.5mg. However a family emergency cropped up which meant travelling unexpectedly to Australia- so she kept me on 15 til I return next week. Very sensible I thought. The flight was awful on my hips and have upgraded for my flight home. I stupidly had a "good day" yesterday and decided to have a swim- those days are long gone- it was more of a doggie paddle my arms hurt so much!
Am getting worried about hair falling out- Its so noticeably thinner I've been asked if I am on chemotherapy-and despite only 2 months of pred my face is moon shaped! Am I taking too much? Despite I am still getting bad days with the pain and fatigue.
I can't wait to reduce my pred when I get home but- feel I'll be so exhausted I may be tempted to hang onto 15 for a few days.
Any tips on how to manage a long flight will be gratefully received. Thank you for listening fellow sufferers and recoverors!