I am 55 yrs old and was diagnosed with PMR 3 weeks ago by a rheumatologist after suffering weeks of pain. I was put on 30mg of prednisoline a day and as there was such a dramatic reduction in the aches and pains within 5 days I foolishly thought that must be it, I’m better now!! Off I went back to my part time admin job this week ( I did the 30 min walk that I had previously done to work, went shopping on my lunch break and even went xmas shopping on Thursday) but am I paying for it now!! Whilst the pain is not as intense it is still difficult to get about and I am fed up that I can’t just seem to get on with my life. I know it’s early days but how do I know when I am doing too much? Can anyone help me with any advice on getting started again? I have my follow up appointment next Saturday so will hopefully get some more advce from him but I must admit this forum has been such a great wealth of advice so far.
Thanks
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Jennyhampshire
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Really, only you can sort this out. You will need plenty of rest. After nearly three years I still take a nap after lunch every day. Only do what you really HAVE to do.
"How do I know when I am doing too much?" Answer "when your body tells you", and it sounds as though you have already found this out the hard way! One has to learn how to live with PMR. It's a life changing experience.
You will get loads of advice from others, but from me. : pace yourself, and give yourself loads of tlc. If you don't it is likely the PMR will only come back to bite!!
Thank you so much for this. I will take on board your advice and rest rest rest!! Am due back at work Monday where I think I have given the impression that all is well now. No one has even heard of PMR so I think I will have to go back and explain that this is gonna take longer than I had thought.
Welcome, and as Paddy says lots have been there as well.
What you have to remember is that Pred does not cure PMR, it just helps manage the inflammation (& therefore pain/fatigue) it produces. So you need to do you bit as well, and that’s difficult to start with, but you can’t go on with life as if it’s not there. You have to stop being the multi-tasking superwoman you were!
Don’t do the 30min walk, the household shopping, the Xmas shopping in one day and working - too much! Even it out, one or maybe two things a day, and then with a rest in-between.
Between now and your next appointment give yourself some TLC and you’ll be okay.
Have a read of attached, it may help you understand your illness a little better.
Hi and thanks for the advice. Where on earth would you get such valuable information from if it wasn’t for this website I don’t know. I think I am beginning to realise that I have to change my busy lifestyle now and plan more around days out, work etc to ensure I don’t over do it.
I gave my family and friends who provide main support a copy of dorset lady crib sheet ,and they understood the potential issues much better. Maybe some workmates/hr may benefit from the knowledge too.
All the pred is doing in holding the inflammation in check - and by the sound of things giving you the "pred boost" that doctors think we all get! It is more common at higher doses - and you have been started at the top of the range. Normally 15-20mg is enough for most people and you probably don't have such a dramatic response (I did to 15mg but didn't get the "pred gives you wings" feeling).
The inflammation is wiped out by the pred - but the actual autoimmune disorder that causes the symptoms is still there in the background. Your immune system is no longer able to recognise your body cells as self and so it attacks them in the same way it would attack invading viruses - and that makes you feel fluey and your muscles intolerant of acute exercise. They will feel sore if you overdo things, just as they would if you overdid some sport, but they are unable to repair themselves as they normally would and so you feel sore for much longer.
There is no easy way for anyone to say how much you can do without payback - you will have to start from a low level and learn your limits and then stick to them. Any one of those activities would have been enough for most of us - and for many, not even one with comfort, You have a new normal now - you will be able to "get on with your life", just a bit differently. The pred deals with some things - but it doesn't cure and it doesn't manage the fatigue that is part of PMR and most autoimmune disorders. And you won't be staying at 30mg for long - now you have to reduce slowly to find the lowest dose that gives the same control of the symptoms as that starting dose did.
This post collects together links that refer to the fatigue problem:
It is the third post of the pinned posts. There are links to articles, support sites and other posts. Between them all you will get reliable information to help you understand where you are - and in various places you will find other people's stories and how they coped. Nine years ago I read every post there had been before on the one forum that existed then but you couldn't do that now.
This is a link to a section in another forum where a lot of old posts which people felt were particularly helpful about life with PMR have been collected together. They go back several years on the predecessor forum as well:
Thanks and I am having a good look round the website and there is so much to read. I definitely had that feeling I could take on the world this last two weeks and didn’t appreciate that the steroids were to blame I thought I was better!!
I am going to take complete rest for a couple of days so my body can start to repair itself again so fingers crossed I will be feeling better soon and then I will take easy.
PMRpro, The tapatalk.com/groups/pmrandg... collated posts you put together Eileen are full of valuable, lay-speak information about PMR/GCA that we've either forgotten or can't take in at the time of diagnosis when we're frightened, confused and in pain. Adding personal reflections by us, the patients who know 'from the inside' gives a rounded picture, not just symptoms/treatment but 'hello, we're sharing this as individuals, not just a set of conditions' .. I know I've had lots of 'Yes' reactions to others' posts which is good for banishing that sense of isolation. So thank you for putting it all together.
Hello jennyhampshire, and welcome to the site. Well done for finding it so quickly! It will keep you straight in future and hopefully you will feel very supported. Your rookie error is made by most of us, particularly if you get the faintly manic feelings from the early days of Pred. Be prepared to fly off the handle easily too. Warn your family to duck. Has your doctor been able to prepare you at all, for what lies ahead? Mine didn't. I have been completely educated by the fine folks on here.
You will need to learn the art, and it is an art, of pacing your activities interspersed with lots of rest. You will also need to learn the art of tapering down your Pred dose once your symptoms settle. Get these two things right and you will be able to manage quite well in spite of having a serious but thankfully self limiting disease. You might want to have a word with work to see if there are adjustments that can be made to your working pattern or duties that will help you to remain at work.
I honestly think the early days are particularly hard because so much of you rebels against having your wings clipped. However, acceptance and knowledge makes for a smoother ride. For many of us this illness follows a period of intense stress. If that is the case for you, this can be a warning or a learning curve about managing your life differently. All the best Jane.
Thanks for your reply it is so wonderful to feel supported by people who understand this condition. Unfortunately my work place has never heard of this and to try and explain it by saying I have aches and pains sounds so pathetic! Also I think I have given the impression that I am fine now due to the effects of the steroids so a bit more explaining to do on Monday I think. Fortunately i don’t have a stressful job and it’s only 3 days a week so I am gonna try and stick at it for now in addition to slowing down in other areas of my life style (although at the moment the last thing I feel like doing today is even going to the end of our path!! )
Thanks again and I will keep looking at the website and take on board all the advice I can
Surely you have an Occupational Health representation? Are you in Hampshire, UK? Or is that a misnomer? Since you say "prednisolone" you must be in the UK somewhere.
PMR is covered by disability legislation - and ignorance of the law is famously no excuse! Just because they haven't heard of it is irrelevant. They are required to make reasonable adjustments - be it a different chair, a place to rest, modified hours or whatever.
Hi I only work for a very small company (10 if us) and reliant on my manager/company director for support. I’m afraid I didn’t help myself going back so positive that I was ok just to get back to normal, which was what I told my manager on returning after a month off work, but I’m learning now after all the kind advice to take it easy. I shall see how it goes on Monday but I do know not to push it.
I'm now five weeks on prednisolone, currently at 23 mg daily, split 16/7. I found that a single dose at breakfast helped for the first few days but soon gave only nine hours relief a day. On the split dose, I'm almost back to normal, exercising ferociously without problems. Everyone's different I guess.
Hi Joydeck. Could I ask what kind of excersise you do? I only walk myself, and haven’t really had time/energy to do more- yet. Single mum to 2 busy teenagers, , fulltime job, friends etc. And, as you know, we mostly hear about «pacing yourself» here on this excellent forum- so that’s why I’m curious. Have you had this energi all the time, sinceyou started on Pred? Are your muscels functioning as normal. No extra soreness? I started on 15 mg Pred 9 weeks ago,12,5 mg last 3 weeks. I’m Ok, just some soreness/stiffness neck-shoulderarea, hips, and some mild nearly-cramps in legs. So Ok, but to run and other excersice? Nope. Interesting about splitting the dose- I’m still following GPs orders to take all 12,5 early as poss in the morning.
I had more than halved exercise before my PMR diagnosis six weeks ago but, since taking prednisolone, I soon returned to four hours a day: including high-impact aerobics, gym, badminton, tennis, cycling and jogging. I once again have perennially sore muscles, which I almost find pleasant, without the least impact on any PMR pain so far as I can tell. My residual PMR pain is small and slowly decreasing, and I just have a mild alternating ache in my outer shoulders. Time for exercise is not an issue as a retiree.
Yes, since splitting the dose and increasing to almost 25 mg daily, I do have energy most of the time and do not pace myself. My muscles are fine although losing 3 kg in weight to PMR doesn't help.
My residual PMR pain is not bilateral and symmetric, otherwise I would increase the prednisolone. I will soon reduce to 22 mg (split 15/7). As for GP's and rheumatologists, I'm following Dr Google for now.
I did the same I felt so well I really went to town, for 2 days since my spurge of activity I have not been able to go out at all pain in my groin is stopping me walking! 5 days now. I'm also fairly new at being diagnosed it's seems to be a personnel learning code, but I do agree I look at the forum everyday and has been a massive help!
Hello and welcome Jenny! And a special welcome to you from all of us in our fifties! I’m 55 too, and to be diagnosed with PMR this young, is an extra burden I think. My Mum was diagnosed at 74, my friends Father at 81. This fantastic forum has been a tremendous help to me, both mentally/emotionally and medically/ physiologically. And it makes me feel less alone: I’ve learned that I’m not the only one trying to accept/live with this «oldmansdecease», as ITS called in Here in Norw. ! The experience/knowledge here goes far beyond the average GP/rheumy here in Norway- sorry to say. My GP is full of support though, she is a keen listener as I share from this forum. Dorsetlady, Pmrpro and Sheffieldjane ought to write a book together! Have IT translated i to Norwegian! There is literally no literature on pmr/gca, and no forums in Skandinavia. have A relaxing Sun!
Hi Jenny
It’s hard isn’t it I was only diagnosed on Tuesday and it’s so much to take in started the steroids on Tuesday also
Had a wee bit of acupuncture done on Friday it helped and I did sleep for 4 hrs but last night different story
Good advice has already been given. I was diagnosed in June & tried to do everything as before. Work, gym and loads more. Nearly 6 months on I have learned that less is more. I still do everything but in moderation. I now try to listen to my body and treat it with respect. As everyone have said TLC is the best tonic.
Thank you so much everyone. I think it has actually dawned on me today that I have an illness and I need to look after myself.
All your words of advice have been so helpful and to read that some of you had rushed back into it just the same as I had and understand how I’m feeling right now is comforting.
Today we Just had lunch down at my sons with the two year old twin grandchildren & in laws and have come back whacked!! Resting this evening even though it never feels enough.
I have arranged easy journeys back and home from work and cut down an hour a day this week each day.
Fortunately my job is sitting at a desk so not too much moving around and am hoping this will be ok but you don’t know unless you try?
I will be treating myself with tlc this week and keeping my fingers crossed that I can at least get through 3 days work.
Hello Jenny,l too found that when l first started on the preds the horrible aches and pains disappeared and l had so much energy which was great at first. I then had to taper down slowly and have been on 3 mg,for a couple of months,but my legs are aching again and also l have a very painful knee.lt could be the very cold weather but the other replies are definitely so true,it is all about pacing yourself and not overdoing things.Welcome to this wonderful forum,l have found it so informative,keep posting xx
If your legs are aching - go back a mg and wait a month before trying again (or maybe not as that will be xmas!). But you are now at a very low dose that won't do any harm - but your adrenal glands have to wake up and get on an even keel again. Even more important in some ways...
I was diagnosed two years ago and recently stopped prednisolone. my GP has been helpful in that she has let me decrease gradually after I told her about this site. I don't think that I would have managed without this site. the practical advice about dose reduction and not overdoing things physically is invaluable, but the feeling of heartfelt support from everyone is so important. I believe that the "aunties" know more about PMR than 99.9 per cent of doctors and I speak as a retired doctor patsy69
Thank you Patsy69 - on all our behalfs. But we do have an advantage on most doctors - we've had PMR/GCA! You could join us now you've seen it from both sides - or were you the wrong sort of doctor?
PMR is a chronic condition which may take months to years to abate requiring much patience as you slowly taper your prednisolone. My Doc tends to follow the inflammatory aspects of my PMR by measuring my Sed Rate which roughflyshould be under 10. Once you get below 7.5 mg prednisolone/ day, you will be on a more anymore "physiologic" range with any side effects from the steroid. there are many different tapering schedules available on the internet. I'm still taking prednisone 2.5 mg per day and probably could get off my prednisone completely..... but in this regard I may need the help of an endrocrinologist since I am wondering whether I have developed adrenal deficiency.... since I'm quite fatigued when I fall below 2.5 milligrams.... the longer you stay on prednisolone the more difficult it will become to taper.... but then again you cannot taper until the PMR runs its course.... since you may be dealing with a subjective element as you titrate your doses.... the more objective sed rate test becomes useful if not mandatory.. good luck.
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