Hi,
I was diagnosed with pmr in May and reducing steroids, down to 10 mg.
I have had amazing support and information from many of you, as I am in denial most of the time and still think I can be super woman.
I have however tried very hard to pace what I do, so Sunday, and Monday did very little in the way of tasks, as I wanted to finish floor boards on Tuesday.
Old property gaps in floor boards, so armed with filler I agreed with myself I would only do 6, this took a couple of hours all ok.
This morning felt like I had been hit by a truck, arm, legs, hands hurt, so tearful spent most of the day in bed.
Was it too many boards or to few days resting before hand.
This I know is trivial considering what others on this forum are going through, just feel so sad, I have wasted a beautiful sunny day in and out of bed.
I so hope this gets better.
Hope you are all well.
Julia
So sorry you feel bad. Get lots of rest for the next few days. Can you go vegetate outside? Last year I hand sanded my bedroom floor. Yes, with pieces of sandpaper, no machines. It took about twice as long as expected, based on previous experience. This year, although at a much lower dose of pred, I would not dream of tackling such a task. Last year I didn't know any better.
I'm not sure resting beforehand is particularly productive. You can't get a useful extra night's sleep before a transcontinental redeye can you? I think it's likely better to do much less, but perhaps every day. Little and often.
Pain, stiffness and the feeling of not being able to cope with PMR, is never trivial to the one experiencing the symptoms. So don't you ever apologize for your feelings. Only ones that are experiencing the same symptoms, can sympathize with you. Accepting our limitation and learning how to pace ourselves is the hardest part of PMR. We no longer can go at it all day long. The life we once lived is a thing of the past. I know, some have gone into remission and gotten off prednisone, but in my opinion, I need to prepare myself for coping with PMR until I die, if Im one of the lucky ones and go into remission, I will gladly celebrate my good luck. We have to keep learning and fighting, cuz the only other option is to give into the pain, stiffness and tiredness and just gI've up.
I appreciate your spirit. But one thing I've learned on this journey is that "fighting" isn't productive. I've said elsewhere, so forgive me if this is repetitive. I look on pred and PMR as a two-headed dragon. Our task is to cajole those two monsters to head in the direction we want them to go - that is, towards recovery. We can help in this task by being kind to ourselves, and one of those ways is to learn to let go of anger and sorrow. I think we all go through a period of grieving for our lives, which have changed forever, but in the end there is so much we can learn to do to help ourselves get better, to help ourselves become stronger. The hardest lesson I've had to learn is patience. Been an unwilling student, believe me.
this is the frustration that goes along with PMR and pred......I started out this
a.m.feeling well and mid-morning crashed....no idea why. I had sed rate
test done this a.m. and don't have results yet. General pain pretty much all
over. I have some back problems and never know for sure what is causing
which pain.....I'm with Jeanne 333.....I will be 80 my next birthday and
sure I will be on some dose of pred the rest of my life...just hope it's low.
when you're told to pace yourself how would we know what is just the
right amount? Hope the days get better for you.....
And no.....your pain is not trivial.....none of our pain is trivial.....
You would have done better to have done 2 boards at a time, Sat, Sun and Monday. So about 30mins a go. 2 hours - no wonder you are feeling rotten.
Pace yourself, you can't win - it just comes and bites you harder.
Hi
Thank you so much for youre reply.
Will rest up for a day or two, then perhaps 2 floor boards at a time.
Just feel like screaming, wouldn't do any good, it is what it is.
My new mantra ( which my grown up daughter's think I am mad saying)
is " We are here, we do what we can, and treasure what we have".
Hmn, think I need to say that a lot after today.
Hope you are well, take care.
Julia
As another Patient finally got the message and treated herself like a 'Precious Princess' - we all wanted to be a Princess when we were little (except me I wanted to be a coal man). Now is your chance. 
Thank you for you're reply,
I so hope you feel better soon, one of the hardest things I am finding is the un-predictability of this illness, as you say you can feel ok, then for no apparent reason, you're body feels like lead and in my case have to sit or lie down.
Let's hope we all have more good days than bad.
Take care
It's hard to accept but I think it's early days for you and I know I did something similar and suffered. It's mainly the repetitive actions on the body and the body is not ready. I can sympathise as like you and many others I thought I was pacing myself. Is it possible to just leave that project for now? It does get better but you need to look after yourself at present. Pacing is a bit of trial and error. I realised fairly early on that I had to change my standards and only do what was necessary. On days when I had a bit more energy I did more but be wary it's so easy to overdo it. Try to sit or lie down in between tasks. It doesn't come easy if, like most of us, you have always been busy but it will be worth it. I hope you feel better soon but as Anhaga has said, get lots of rest.
When i said fighting this PMR, I meant not giving into the depression and the feeling of hopeleassness. You stated it differently and with more clarity, in the following quote, which i copied. "I think we all go through a period of grieving for our lives, which have changed forever, but in the end there is so much we can learn to do to help ourselves get better, to help ourselves become stronger. The hardest lesson I've had to learn is patience."
Hi,
Thank you for you're reply,
I know you are right, a lesson learned.
Before pmr I wouldn't have thought twice about doing the who floor, very different way of living, so not dealing with it very well.
Two floor boards at a time, from now on.
Hope you are well
Sorry - that is not "pacing isn't working". That is "I did far too much and now it is pay-back time".
It is neither a case of too many boards or too few days resting, I don't even agree with lodger on this occasion - you have to accept that this sort of physical work is no longer something you can undertake and expect to feel OK. You have to adjust your expectations. I've had PMR for a long time, I'm very well compared with most of you and I wouldn't even dream of doing 1 board now - and it is something I have done in the past.
I did something of the same sort several years ago - and I was ill for months afterwards. There is a very fine line between managing to do something and recovering with a bit of extra rest and really overdoing it and ending up as you feel now - but for weeks and weeks or even longer. There are some experts who are of the opinion that when someone has developed an autoimmune disorder accompanied by fatigue - as in PMR - which is very common, it is possible that excessive fatigue due to over-exertion may even have been a factor as the final trigger. That isn't expressed very well - I'm not saying it is the cause but you may have been OK despite the autoimmune disorder but then you asked your muscles to do far too much and they aren't able to recover afterwards. They are intolerant of acute exercise in PMR and it is easy to tip the scales too far in one direction and develop full-blown chronic fatigue syndrome.
I am in remission now for 6 years. I had GCA for 5 years.
I also help to run PMR&GCAuk North East Support.
Hi,
Thank you for you're reply.
It hard for all of us, acceptance has never been my strong point, can't get my head to realize my body doesn't function at speed even very slow n some days.
Can only keep reducing the steroids and hope for the best.
Hope you are well
So sorry you are feeling bad. I find the fatigue can be infuriating and this is one aspect of having PMR I find most difficult.One of my main hobbies is gardening and was determined to carry on doing it. I read all the info about pacing and to begin with totally ignored it and, ended up like you...a very miserable mess.
So...I tried doing it little and often . The trick with pacing is to stop while you still have some energy in reserve and not to keep going because as you hae found out , you feel terrible later .
I have also found that you can't pre-store energy .There is quite a lot of information online about pacing/chronic illness. I found the "spoons method" particularly interesting
Hi Julia, so sorry you feel unwell today, is 10mg high enough dose for a recent diagnosis, most say they are on 20 or 30mg for longer before reducing.
i don't know if any amount of rest sets you up for being busy, I do two 12 hour shifts a week and nights sometimes, I feel so flat and exhausted after I can hardly be bothered to speak. Then I spend days trying to muster energy again, today had hair done at hairdressers and totally failed this afternoon to do a thing. I've cooked tea but can't muster energy to wash up the pans, the dishwasher did the rest. It's soooo frustrating.
Tomorrow I am meeting a friend an hour away, I will have to have 2 hours to get ready can't rush, then after a lovely catchup when I get home, I won't have any reserve energy to do tea for my husband and son, so not sure how that will go, I will feel so guilty.
You take care, it's a long road but hopefully it will burn it's way out and we can start living again.
Bless you,
That did make me smile, too many wrinkles for a princess, but definitely going to learn more patience.
Take care
Hi,
Thank you for you're reply.
Its an on going project in reality, but in my head needs to be finished asap, so I can get on with next project. Wrong, not anymore.
Will finish it bit by bit, it's only floor boards, and having the personality I do, why not finish it in a day.
Need to organize my thinking and pay attention to the advise and support I receive from all on this forum.
Hope you are well.
Hi,
Thank you for you're reply,
I should have taken notice of you're advise on previous posts, thought if I had done very little a couple of days before I would be fine.
I have always had a physical job and been lucky enough to have lots of stamina, and quite enjoyed lifting and moving fixture that my younger colleagues couldn't, just get on with the job was my motto.
I have lived alone for many years and always done diy and garden, it is very frightening to me to think I can't do even the smallest of tasks.
How do you ever accept that.
Hope you are well.