My Journey with PMR: Listening to my body.

It took me awhile also @tiateacake 🙃- It is great once you realize that light at the end of the tunnel is not a train! Do you journal or keep a daily log of your symptoms?

I had a moment last month but after a day of rest it stopped. When ITas I call PMR started to say hello again this month I sorted it quickly and just a little cross on the calendar. I did start a journal but that really is not something I find helpful, I really envy people with the patience to do one. Mine ended up in the recycle bin.

I’ve been off prednisone since April and have done fine so far. I had a scare the other day with an overwhelming feeling of extreme fatigue and some aching in hips but after taking an Aleve and about an hr nap (I never nap), after waking I felt well and normal, so not sure what it was but I do listen to body much more since my PMR diagnosis a year ago. I want to avoid returning to prednisone at all costs, so I will pray and cross my fingers and toes daily!

Oh yes the art of napping. I never have been a napper either, I used to see people asleep on sun loungers whilst on holiday and think, how do they do that? But now I put on my favourite podcast and think well if I don’t drop off at least I have been entertained. Works every time. Fingers crossed here for you.

I find that just a few notes on the calendar app on the phone are incredibly helpful in keeping track of patterns, dosages etc and proving accurate information when I see the Doc or Rheumatologist

How are you using your calendar app to do that? Do you just create a new appointment each day?

I hear you loud and clear. No shrugging it off any more - now it's more likely I'll have a nap!

Yep, just create a new appointment note (more than one note at times) with changes in the Pred dose and how I'm feeling, also any changes in the Plaquinil dose, blood tests, significant diet inclusions or exclusions, changes in supplements ...basically anything I think might be relevant.

My left shoulder had been behaving itself until a couple of days ago so I had a good think about what had changed. I was doing weight training 3 times a week and most cardio involved use of the shoulder until last week I decided to start to train for my big birthday challenge so weight training was now only once a week and shoulder was ignored. As the fast lane of the pool had quite a few slow swimmers in it and not getting stressed is obviously important with PMR I decided to just go up to the gym. Interval workout on Skierg (shoulders worked) and Airbike (shoulders again) during the interval. Then interval training on rower and spin bike. Apart from jelly legs at the end I realised shoulder pain had gone. So for me shoulder has to be worked every day to stop the pain starting.

Yes!! Yes to above. I go to 6 stretching type classes (stretching, yoga, and tai chi which is more balance and mobility) a week and it makes a huge difference. I also lift weights. Walking is difficult but yesterday I walked 10,000 steps (a breakthrough! My previous ceiling has been 6K for over a year.). My geriatric rheumatologist prefers I stay on land rather than the pool so I started Pilates in private lessons. That may have pushed me a bit...doc said he wants me at or below 5 mg Prednisone (I'm also on Kevzara and love that), and I'd need more Pred to continue Pilates. So I'm going to add in the pool just for my mental health. He suggested that a push-pull workout (Google it) seems to work well with PMR, so I'll shift my weight routine to that over the next week or two.

I have to stay active.....essential to optimize physical functioning and my mental health.