I thought I would post an update on my progress since my original diagnosis and posts on this site. First, thanks to those who responded to my posts and read my long post regarding my internet search and the amount of misleading information on the web. I appreciated all the links provided and also found some additional informative sites.
Well, what I have learned. I have come to accept I am pretty much powerless over this illness and it is going to be a journey. In have also learned that I am empowered to be actionable in my management of my journey and it is very challenging. I can effect change in some areas, such as diet, yet not so much in areas like chronic fatigue or unexpected painful days.
I have managed to improve my diet by decreasing carbs and sugars. My weight did increase a bit, yet it seems my fat has been redistributed from my buttocks to create a very ugly fat collar around my lower neck. Ugly! Not a thing I can do to change that as it is a result of the prednisone.
I had blood drawn today so I'll have more info next week when I visit my GP. They have me alternated with biweekly visits with the GP and Rhuemy.
Chronic fatigue is a constant companion right now as well as off and on GCA/PMR symptoms. I am still taking 60 mg a day of prednisone and experience temple pain and much milder vision issues. When I walk, my legs feel like I am walking against the ocean surf. One slow step at a time. And than I have a day with minimal symptoms and rejoice. Learning to pace is just going to take time. I haven't found any real patterns except limiting activities to an hour or so at a time and not using large muscle groups to vacuum, hike, etc.
Insomnia is another companion, and I even tried activan to help sleep. It is like something shakes my body awake after an hour or so of rest. Of course, I am usually drenched upon waking. I am getting a little grumpy. This sounds like a good whine, yet many of you know, prior to the steroids I was pretty much immobile (like many of you) and in significant pain, with double vision and black spots. I am happy to be making progress and grateful for this forum. I have read many of the earlier post and know that I am not alone in my journey.
I also learned PMR is also considered a mixed connective tissue disease. So, PMR is an inflammatory, autoimmune, vascular and mixed connective tissue disease in which all subgroups should be addressed to promote recovery. I have self defined "promote recovery" as actionable efforts which will minimize pain, build strength and maximize life quality as reasonable as possible within ones life. (How does one do all this? - I do tend to over complicate. And prednisone side effects is another subgroup in itself.)
I am convinced this can't be done alone and takes a team effort. I am also convinced the support on HU is a key part of my team as I don't think the widespread medical community is quite there yet. The advice you all have provided has been invaluable.
Thanks again to the local experts and your replies. I hope everyone's journey is better coming into the weekend.