1. < Polymyalgia Rheumatica (PMR)

Listening to my body.

Posted by tiateacake @tiateacake, Jul 28 11:21pm

When I started this journey in May I kept getting told listen to your body and now I understand. Interrupted sleep last night due to loud fireworks so feeling tired this morning. The old me would have shrugged off this feeling and gone for a jog and gym later. But I will never ever forget that pain of not being able to move any part of my body or sit on the toilet. As for getting dressed, well that was a joke wasn’t it. So hubby taken dog out and I am having an easy day. Never thought I would turn into a wise owl. Tomorrow is another day.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Jul 29 8:12am

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?

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1 reply
tiateacake | @tiateacake | Jul 29 8:29am
In reply to @johnbishop "It took me awhile also @tiateacake 🙃- It is great once you realize that light at..." + (show)
@johnbishop

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?

Jump to this post

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.

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katejaha | @katejaha | Jul 29 9:28am

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!

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1 reply
tiateacake | @tiateacake | Jul 29 10:07am
In reply to @katejaha "I’ve been off prednisone since April and have done fine so far. I had a scare..." + (show)
@katejaha

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!

Jump to this post

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.

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mtr2601 | @mtr2601 | Jul 29 3:36pm
In reply to @tiateacake "I had a moment last month but after a day of rest it stopped. When ITas..." + (show)
@tiateacake

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.

Jump to this post

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

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1 reply
leeta | @leetaanderson | Jul 30 8:16am
In reply to @mtr2601 "I find that just a few notes on the calendar app on the phone are incredibly..." + (show)
@mtr2601

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

Jump to this post

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

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1 reply
nancy53 | @nancy53 | Jul 30 10:38am

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

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mtr2601 | @mtr2601 | Jul 30 1:17pm
In reply to @leetaanderson "How are you using your calendar app to do that? Do you just create a new..." + (show)
@leetaanderson

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

Jump to this post

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.

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