Sorry if this post appears twice don't think first one went.
I was asking if it is too much to expect to feel 100% all of the time whilst taking pred. Currently on 12.5 for last 3 and half weeks. 15 for three weeks before. Am now pretty much pain free but some days my muscles ache and feel sore and I get so emotional. Poor hubby!. Wishing you all a good day.
Hi
Not many are 100% free from pain so count your blessings
You do need to rest and look after yourself .
Did you do more on the day before if so maybe you overdid it and those muscles are protesting .
Dont reduce too quickly and most of us change emotionally
I tend to swear a lot something I never did pre pred
Funny old illness
Thanks for your reply Rose. Certainly is a funny old illness but not in a ha ha way! I have never been a very patient person so looks like I'm in for a lesson with this journey. Wishing you a good day😊
We need to do our part in this illness, as well as the Pred. that only deals with theinflammation and is not curative.
This means pacing ourselves with plenty of rest between activities and probably opting out of some things altogether. Personally I can really enjoy an outing for instance, and am astonished at how “slapped flat” I can feel later or the next day. We need to hoard our energy like miser’s gold.
Emotions can be very much on the surface and wherever possible, we should try to avoid stressful situations and vexatious people. Easier said than done. Again, ensure that you get plenty of rest and loved ones are warned.
Hello
Pred doesn’t get rid of it, it just stops the inflammation doing its worst. For whatever reason your body will still be in it’s confused state where it attacks the wrong bits; it is still ill. The result can be all of the things you describe. Pred also makes the muscles weaker temporarily and make you more emotional and also cause all of the things you describe. Pred doesn’t mean you can carry on as if everything is normal I’m afraid, though there are a small few who do.
Until I got to well below 10mg I was feeling silly. I got worse again before my adrenals kicked in properly between 7&5mg then got much better at 3mg. I find fatigue for whatever reason (no idea now at 2.5mg) is totally unpredictable these days.
I remember a week in May 2017 when I felt 100% 😁 I was on 20mg and just back from a week in the sun 🌝
Since then, good and bad, but don’t think I’ve ever achieved 100%. There’s always an ache or some tiredness or ‘just not quite right’. But I can unbalance my scales by doing too much, or NOT doing enough. If the world leaves me alone, I dedicate Mondays as a day of rest, which seems to help. But not always achievable. Yesterday was a particularly ‘sticky’ day from 7.30 to 22.30 with no rest; I know I’m going to pay for it today!
Thanks for reply. Sounds like a balancing act! Expect I'll get up on that tightrope and try not to fall😊Hope your day goes well.
That's it exactly!
Try a search on Spoon theory, it can help explain, or there was a lovely post about appreciating the simple things by bunnymom the other day which is very good. We all find this difficult.
I don't think anyone feels 100% all the time!
If you are having good and bad days try keeping a diary of what you do and how you feel. I'll lay odds you will find you have a good day so you do more and then the next day or the day after you have a bad day so do less - and the next day or so feel better! It is all about pacing:
healthunlocked.com/pmrgcauk......
(This link includes the spoon theory, living with a gorilla and a couple of more medical offerings on managing fatigue)
The pred is relieving the inflammation and that reduces the symptoms - but it does nothing against the underlying autoimmune cause of the illness which continues in the background, attacking the body tissues and making muscles intolerant of acute exercise. Do more than they are capable of and it will bite back. You will be able to do more in the future - but you have to get the muscles into training starting from a very low level and building up VERY slowly and carefully. And most people, even former athletes, say they can't manage more than about 50-70% of what they did before - there are exceptions, but they are few and far between.
Thanks for the reply and links. Am on a huge learning curve here. Need to make sure I have plenty of bananas for the gorilla. It helps to laugh😊
Hi, i rarely feel 100% better, but often reach 70%.
As my 5+ years with PMR have passed, so has the normal aging process continued. Arthritis has become more evident, and muscle atrophy from reduced activity has challenged my physical abilities.
Emotional consequences of PMR and Prednisone are not often mentioned...but I found myself very emotionally delicate, easy to anger, easy to cry, and depressed. Those emotional ups and downs were at higher levels of Pred, and eventually passed.
While much of the attention of Forum users focuses on Prednisone and pain...there is much more to the experience of PMR.
Look for the search bar (top right of the home page), and search terms depression and emotions. Hopefully you will get some information.
As PMRPRO and SheffieldJane mentioned, you will find several understandable articles that will help explain how others have managed their PMR experience.
This is ever the learning experience, and at the end, you will have a better education in PMR than many in the medical profession.
Kind regards, Jerri
PMR diagnosed 2013, curently 3 mg pred.
Thanks for replying. This is such a helpful group. So good to be able to talk with people who understand. Am now enjoying insomnia!! Currently it's 2.30am been awake for the last hour. Getting through a lot of books 😕. Wishing you all the best.
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