1. < Polymyalgia Rheumatica (PMR)

My Journey with PMR: Listening to my body.

Posted by tiateacake @tiateacake, Jul 28, 2024

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.

tiateacake | @tiateacake | Jan 30 9:21pm

Body behaving quite well on 4mg I am pleased to say. So much more energy and a feeling that is hard to describe unless you have been through this on Pred. I told my hubby it is like being a child on Christmas Eve with that excited feeling. I have started taking a Vit B complex but of course that will take weeks to kick in. When I started this I was told as my diet was very good there should be no problems and they were right apart from a couple of niggles. Eating plant based is a challenge sometimes to get enough of the Vit B, adding marmite or good old nutritional yeast helps but I don’t want to give my body an excuse to get back on the merry go round.

REPLY
tiateacake | @tiateacake | Feb 18 9:12pm

Instead of 3.5mg for just 2 days next week I have decided to do the 3.5 for a week before dropping to 3. I had a wake up call yesterday, we have family coming to stay for a few days and have found the prep for this quite exhausting. I can work hard in the gym for hours no problem, walk or run with my dog then once home after a cup of Chamomile tea get on with every day things. But yesterday was different, hubby kept asking me if I had everything I needed for the meals and I could feel myself getting annoyed and anxious at the same time. I was cleaning part of a room that was well overdue and suddenly hit with exhaustion, so much so that I just went to bed at 2pm. I know it is just PMR saying, I am still here you know. I feel much better this morning and not even bothered that my Dob has most of the bed, as dogs do. I may even use PMR as an excuse to cheat at Monopoly, works for me.
REPLY
1 reply
ropnrose | @ropnrose | Feb 19 8:35am
In reply to @tiateacake "Instead of 3.5mg for just 2 days next week I have decided to do the 3.5..." + (show)
@tiateacake

Instead of 3.5mg for just 2 days next week I have decided to do the 3.5 for a week before dropping to 3. I had a wake up call yesterday, we have family coming to stay for a few days and have found the prep for this quite exhausting. I can work hard in the gym for hours no problem, walk or run with my dog then once home after a cup of Chamomile tea get on with every day things. But yesterday was different, hubby kept asking me if I had everything I needed for the meals and I could feel myself getting annoyed and anxious at the same time. I was cleaning part of a room that was well overdue and suddenly hit with exhaustion, so much so that I just went to bed at 2pm. I know it is just PMR saying, I am still here you know. I feel much better this morning and not even bothered that my Dob has most of the bed, as dogs do. I may even use PMR as an excuse to cheat at Monopoly, works for me.

Jump to this post

Smart move. We all want to be off of Prednisone as quickly as possible, but not at the expense of feeling bad or having a flare. I have actually told family not to come visit me, while I am dealing with PMR. I would want everything to be perfect for company, but at this point, I don't need the stress. Take care of yourself.

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tiateacake | @tiateacake | Feb 19 11:35pm

I was worried how I would cope with family coming to stay, all the prep did exhaust me the other day. There was no way I could put this off as my youngest grandson wants to show me his program he follows in the gym. He takes himself there after school Monday - Friday and I am so proud he has chosen to do that. Everything was ready yesterday and the dog was accepting that she was not allowed on sofa today. Then it happened, a power cut. Luckily we have a log burner so staying warm was not a problem and a gas hob so dinner could go ahead. But I was getting a bit twitchy. So I did what it seemed the whole neighbourhood did, took the dog out for a walk. 4 hours before power returned but I am pleased to say I was not really that bothered. We ate later than I normally do and I had to say goodnight as I knew it would be silly to fight the tiredness. It was lovely listening to the laughter and my daughter’s non stop chatter as I drifted to sleep. Taking the dog for a run in a couple of hours then off to the gym with my daughter and grandson. You know what? I feel normal. Now where has the dog put my slipper.

REPLY
tiateacake | @tiateacake | Feb 21 10:27pm

Two nights of bad sleep and normal routine out the window did lead to a flare yesterday. Bad sleep as we ate later in the day as family were staying. I knew I was in trouble yesterday morning as I could not lift my pj top up over my head and the pains were pretty bad. Had an argument with hubby as he said, just take extra Pred and go back to bed. Two things wrong with that suggestion, firstly we still had family here and secondly I knew the right exercise would fix the shoulders. I tried to explain to my daughter who is an ODP and sees a lot of older ladies who have been on Steriods for years and the problems that brings, the pain felt like the blood flow was restricted and she agreed that moving would solve that. Just a 1000 metre on my rower near enough eased the pain. Family went home late morning and I was asleep on the sofa within 30 minutes and felt better for that. This morning I know it is still there a bit, so will be interesting to see if it stops me lifting my normal weights at the gym, but of course it will so I will just reduce the weight and carry on. Pill cutter at the ready for 3.5mg next week.

REPLY
4 replies
rnm | @rnm | Feb 22 3:11pm
In reply to @tiateacake "Two nights of bad sleep and normal routine out the window did lead to a flare..." + (show)
@tiateacake

Two nights of bad sleep and normal routine out the window did lead to a flare yesterday. Bad sleep as we ate later in the day as family were staying. I knew I was in trouble yesterday morning as I could not lift my pj top up over my head and the pains were pretty bad. Had an argument with hubby as he said, just take extra Pred and go back to bed. Two things wrong with that suggestion, firstly we still had family here and secondly I knew the right exercise would fix the shoulders. I tried to explain to my daughter who is an ODP and sees a lot of older ladies who have been on Steriods for years and the problems that brings, the pain felt like the blood flow was restricted and she agreed that moving would solve that. Just a 1000 metre on my rower near enough eased the pain. Family went home late morning and I was asleep on the sofa within 30 minutes and felt better for that. This morning I know it is still there a bit, so will be interesting to see if it stops me lifting my normal weights at the gym, but of course it will so I will just reduce the weight and carry on. Pill cutter at the ready for 3.5mg next week.

Jump to this post

Hello,
I'm wondering how long you have been on prednisone, what was your initial dosage and how is your doctor tapering you. I agree with you about the activity level. When I first get up, I am still very achy, but if I am able to exercise a bit, I feel better. Also, I have been taking an Advil in the morning with the prednisone, which sometimes helps. Thank you.

REPLY
tiateacake | @tiateacake | Feb 22 10:53pm
In reply to @tiateacake "Two nights of bad sleep and normal routine out the window did lead to a flare..." + (show)
@tiateacake

Two nights of bad sleep and normal routine out the window did lead to a flare yesterday. Bad sleep as we ate later in the day as family were staying. I knew I was in trouble yesterday morning as I could not lift my pj top up over my head and the pains were pretty bad. Had an argument with hubby as he said, just take extra Pred and go back to bed. Two things wrong with that suggestion, firstly we still had family here and secondly I knew the right exercise would fix the shoulders. I tried to explain to my daughter who is an ODP and sees a lot of older ladies who have been on Steriods for years and the problems that brings, the pain felt like the blood flow was restricted and she agreed that moving would solve that. Just a 1000 metre on my rower near enough eased the pain. Family went home late morning and I was asleep on the sofa within 30 minutes and felt better for that. This morning I know it is still there a bit, so will be interesting to see if it stops me lifting my normal weights at the gym, but of course it will so I will just reduce the weight and carry on. Pill cutter at the ready for 3.5mg next week.

Jump to this post

The symptoms started in April last year but I did not seek help until May so I was pretty bad by then. I saw a nurse for blood tests and started on 15mg. I was given a tapering list and basically told off you go. I did get a problem when the list said 12.5 and then drop to 10mg which I now know was too big a taper, I had to stay on 12 then taper by 1mg every 6 weeks. Thankfully I found this helpful site and have been able to learn more. Once back at the gym it took months before I could increase any weights used esp on shoulders. Swimming really helped and still does. I was able to get back to normal with my fitness and I realised tapering every 6 weeks was not right for me, possibly because I was so active so dropped it to 4 weeks and felt better for it. No problems as such until 5mg but they were not really problems just my body realising it had to do some of the work Pred was doing. Last day of 4mg today and going to do 3.5 for a week then drop it to 3mg all being well. Routine really seems to help me but that was fine until family came to stay for a few days and just changing the time I had dinner had a massive effect on me, for the two nights they were here I only had a couple of hours sleep and the pain was back and appetite disappeared so I knew PMR was reminding me it could come back, I did struggle a little in the gym yesterday but I feel better this morning and a good 8 hours sleep has really helped. I don’t normally take supplements apart from the much needed calcium one but I started taking a vit B complex and my sleep improved after about a month. If the problems that seemed to be returning had remained then of course I would have stayed on 4mg for another week but I think all is well. Not sure if my long post will be of any help to you. If you love your fitness then you will be used to listening to your body and that will really help you. Take care.

REPLY
1 reply
agfuen05 | @agfuen05 | Feb 23 12:29pm
In reply to @tiateacake "Two nights of bad sleep and normal routine out the window did lead to a flare..." + (show)
@tiateacake

Two nights of bad sleep and normal routine out the window did lead to a flare yesterday. Bad sleep as we ate later in the day as family were staying. I knew I was in trouble yesterday morning as I could not lift my pj top up over my head and the pains were pretty bad. Had an argument with hubby as he said, just take extra Pred and go back to bed. Two things wrong with that suggestion, firstly we still had family here and secondly I knew the right exercise would fix the shoulders. I tried to explain to my daughter who is an ODP and sees a lot of older ladies who have been on Steriods for years and the problems that brings, the pain felt like the blood flow was restricted and she agreed that moving would solve that. Just a 1000 metre on my rower near enough eased the pain. Family went home late morning and I was asleep on the sofa within 30 minutes and felt better for that. This morning I know it is still there a bit, so will be interesting to see if it stops me lifting my normal weights at the gym, but of course it will so I will just reduce the weight and carry on. Pill cutter at the ready for 3.5mg next week.

Jump to this post

Good luck tapering off Pred. I have been trying to get off of it for a while but even the little things done wrong seem to bring back the pain, soreness and stiffness to my joints and muscles. I'm currently alternating 3-4 mg every other day. My target is to be off Pred by June. Again, good luck.

REPLY
charm1 | @charm1 | Feb 24 7:45am
In reply to @tiateacake "Two nights of bad sleep and normal routine out the window did lead to a flare..." + (show)
@tiateacake

Two nights of bad sleep and normal routine out the window did lead to a flare yesterday. Bad sleep as we ate later in the day as family were staying. I knew I was in trouble yesterday morning as I could not lift my pj top up over my head and the pains were pretty bad. Had an argument with hubby as he said, just take extra Pred and go back to bed. Two things wrong with that suggestion, firstly we still had family here and secondly I knew the right exercise would fix the shoulders. I tried to explain to my daughter who is an ODP and sees a lot of older ladies who have been on Steriods for years and the problems that brings, the pain felt like the blood flow was restricted and she agreed that moving would solve that. Just a 1000 metre on my rower near enough eased the pain. Family went home late morning and I was asleep on the sofa within 30 minutes and felt better for that. This morning I know it is still there a bit, so will be interesting to see if it stops me lifting my normal weights at the gym, but of course it will so I will just reduce the weight and carry on. Pill cutter at the ready for 3.5mg next week.

Jump to this post

I commend for your going down/off prednisone. I am going on 30 yrs and will never be off. For your health in later years do continue on your path.

REPLY
vgen | @vgen | Feb 24 8:49am
In reply to @tiateacake "The symptoms started in April last year but I did not seek help until May so..." + (show)
@tiateacake

The symptoms started in April last year but I did not seek help until May so I was pretty bad by then. I saw a nurse for blood tests and started on 15mg. I was given a tapering list and basically told off you go. I did get a problem when the list said 12.5 and then drop to 10mg which I now know was too big a taper, I had to stay on 12 then taper by 1mg every 6 weeks. Thankfully I found this helpful site and have been able to learn more. Once back at the gym it took months before I could increase any weights used esp on shoulders. Swimming really helped and still does. I was able to get back to normal with my fitness and I realised tapering every 6 weeks was not right for me, possibly because I was so active so dropped it to 4 weeks and felt better for it. No problems as such until 5mg but they were not really problems just my body realising it had to do some of the work Pred was doing. Last day of 4mg today and going to do 3.5 for a week then drop it to 3mg all being well. Routine really seems to help me but that was fine until family came to stay for a few days and just changing the time I had dinner had a massive effect on me, for the two nights they were here I only had a couple of hours sleep and the pain was back and appetite disappeared so I knew PMR was reminding me it could come back, I did struggle a little in the gym yesterday but I feel better this morning and a good 8 hours sleep has really helped. I don’t normally take supplements apart from the much needed calcium one but I started taking a vit B complex and my sleep improved after about a month. If the problems that seemed to be returning had remained then of course I would have stayed on 4mg for another week but I think all is well. Not sure if my long post will be of any help to you. If you love your fitness then you will be used to listening to your body and that will really help you. Take care.

Jump to this post

Your journey sounds familiar. Many of us were older women who were active and exercised then knocked down with PMR. Never heard of it before i was diagnosed. And didn’t realize how it can take me down.

REPLY
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