Okay, is there any near definitive answer or theory about the role of fatigue vs. PMR pain? (Is there not even ONE med expert focusing on this study?) Do I hear some saying the prednisone itself is cause of exhaustion? My big question in wanting to lower my 20 mg of prednisone is how much do I endure the return of "slight" aching of shoulders etc. before giving in to an increase of the pred.? Again, I'm SO grateful for the participants on this list! I have consoled one #&% relative of mine not to fear genetics as a cause because, I told him if he read your comments, he would realize PMR apparently happens only to bright people! Thanks, people!
Fatigue occurs in many atuo-immune illnesses - put in your search engine 'The Spoon Theory' and read.
The fatigue you are experiencing is not vs Pain, the Pain is either 'steroid withdrawl symptoms' or dropping to fast and too much.
1)% drop and no more at a time.
Sent you a PM for reductions plans - free of charge.
1), should read 10% - how I wish we had an edit button.
I haven't got an answer, wish I had! Most of the autoimmune conditions do have fatigue as a symptom - it isn't just PMR. Because it is so widespread a symptom, I think it might be a diffcult research project,
I have never been totally pain or fatigue free. During the day I can manage the pain but if the fatigue gets hold then that is it. Now I am retired I have the luxury of being able to crash when necessary, but when I was working, I couldn't have counted the times I slept on the floor of the ladies' - it was the only possibility as the building I worked in didn't have a restroom.
I think that is the answer - if the pain is 'manageable' or 'bearable' then do it,but be careful it doesn't step over the line.
Oh, you are quite right - fatigue is a side effect of Pred and a symptom of PMR. Double whammy, aren't we lucky?
Not sure I want to be included on your "bright' list but here I am. If I had
a choice think I would be a little "dumber" and free of PMR
One of my e-mail buddies that has PMR told me she found statistics
that said out of l00,000 people 700 have PMR. Not a lot of people to
do any kind of study on is it? I don't even think the pharmaceuticals
would bother doing drug research since not much financial return for
that amount of patients. And.....pred is so cheap.
As for fatigue....I find it's on a daily basis as to whether I feel like I can
put one foot in front of the other. Just keep reading the posts on this
forum and hopeful that you can find some answers from us bright folks.
Fatigue is, as already said, a part of almost all autoimmune disease. Pred itself CAN cause fatigue but PMR is probably the bigger culprit.
In order to lower your 20mg dose you need to go SLOWLY - that means small drops and not too close together.
Follow this link
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
and consider the reduction paln: it has worked for a lot of people to get them to a lower dose than ever before. Add to it the concept that no reduction should be more than 10% of the current dose of pred - suggested by top US experts some years ago. If the reduction is too big your body notices and protests. Keep it small!
If you do still have an ache - give it a few days, up to 10-14 days. If it starts to get worse, go back and try a smaller drop. Or dead slow... If it is steroid withdrawal it will improve. If it doesn't - the dose if too low. But if you go slowly you should be able to get well below 20mg for PMR.
I have sent you a personal message.
I and some of the other teachers in my building were talking and they mentioned that for them (they do NOT have PMR) taking iron had helped with their fatigue. Well, since then I have tried taking some iron but it hasn't seemed to help me. Surprisingly the other suggestion for sleeping better that one of them gave (take a combined calcium and magnesium pill at night) did work very well for me and I am now sleeping thru the night. I shall have to run the idea of taking iron by my doctor to see what she thinks.
Is your iron low? Only if it is will taking iron help you. You run the risk of getting too much iron if your levels are already normal. As for sleep, I have found taking one of my calcium supplements at bedtime with a small snack which includes a little milk does seem to help me sleep. I certainly have only had about four or five restless nights since starting this many months ago, and until then had basically been a lifelong insomniac!
Yes, the calcium (with magnesium) idea has been just amazing for me. I can't take it in the morning anyway due to taking my thyroid pill then but I was surprised taking it before bed with some yogurt has truly helped. I can sleep thru the night now with just a few turning-over-then-fall-back-asleep moments. With school being so stressful (I teach) it has meant that I am much more mentally alert now. Phew! I shall have to double check my last report on my iron. Good point!
I take magnesium and find it works also for me for sleep :
If you read the Kate Gilbert's book page 78 she said that when she was trying to reduce from 7.5 and yo-yoing she used paracetamol to ease the pain and 8 tabs per day for up to 2 weeks won't hurt you, but check with your doctor particularly if you have liver or kidney problems. Her words, not mine! We should all have a copy of her book: Polymyalgia Rheumatica and GCA: a survival guide.
I would rather take a tablespoon of a good brandy than take paracetemol.
I managed on Remy Martin for pain relief all the way through. I waited till on my scale of 1 to 10 and then it reached 8 - 1 tablespoon.
Developed by Medieaval Monks as a medicine. It also does less damage is taken responsibly.
GCA 5 year and now into 7th year of remission.
Have read the book thoroughly and must have missed the reference to brandy! But I'm sure it's in there so I'll swill my paracetamol down with a tablespoon of Remy!
If it was 'Living with PMR&GCA' produced by the North East and co-authored by Eileend. You will understand they would not let me put it in the 'Tips and Tricks' section
I have read it - and probably long before most other people. It's a good portrayal of her journey with PMR - but having worked with hundreds of people on all 3 forums for the last 7 years I can tell you that she was very lucky and really not very typical.
Frankly I'm surprised paracetamol worked for her. Nothing would induce me to take paracetamol - taking 8 tabs a day for less than 2 months caused one of our forum ladies to have seriously raised liver enzymes. High enough for her panicked GP to send her for an emergency liver scan. Mercifully it was OK - but she has been told not to take it again. There is a VERY narrow line between therapeutic dose and pathological dose and having watched someone die of paracetamol-induced liver failure I don't wish to risk it.
Repeated international studies have shown that paracetamol is no better than placebo for most pain - and since placebo has no liver risks I'll stick to that. If I want to risk my liver I'll try lodger's brandy...
PS - forgot to say: another method with no liver risks is to use the "Dead slow and nearly stop" approach:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
which was developed as a result of experience and this particular one is currently being used by a rheumatology group for a clinical study in the north of the UK.
By allowing their body to get used to the new dose just one day at a time people rarely have enough pain or discomfort to feel they need pain-relief. The smaller the drop, the smaller the disruption to your body. It may look slow - but nothing is slow when it works. Dozens of people on the forums have used this or something similar (there are two plans in circulation) or have worked something out for themselves and almost all have got to lower doses than ever before - bearing in mind you aren't necessarily going to get to zero. You are looking for the lowest dose that manages your symptoms as well as your starting dose did. That may be zero - it may not.
just as rain can be anything between that miserable dampness from heavy mist or drizzle through to the drenching tropical downpour or the windborn hurricane stuff so my fatigue takes on many related forms.
My first real experience of fatigue was the mental fatigue resulting from the effort of simply managing where I put one foot in front of the other lest a foot wrong causes a twist or a stumble to suddenly increase chronic back pain. Physically raring to go. But mentally exhausted, used it all up, not alert. Hard to find the energy to talk. In need of sleep to recover, until the next day. Made worse because I didn't understand what was happening and information was scant.
Beneath that the constant drain of "nerve pain" that reduces mental energy. All consuming.
In retrospect the fatigue of migraines. A desire to just curl up in a ball, unable to think of anything beyond the pain. Seemingly incapable of coherent thought. Hard to bundle up the pain and throw it away. Very much a "just leave me alone in my sea of pain" sort of fatigue.
By contrast, the short term fatigue of having rowed a couple of kilometres, or cycled up a hill. Muscles that don't want to move another inch, but recover relatively quickly. A pleasant sort of fatigue in some ways, with an increased sort of mental energy. A feeling of being "pumped" that comes with a bit of achievement..
But the possibly deeper physical fatigue of having walked in the hills all day. All done. Mentally a bit euphoric but ready for a rest. Back to normal the next day after a good sleep..
Then the fatigue of a general feeling of missing mental and physical energy. Of not quite being on the ball. Fatigue that doesn't go away with a sleep. Permanent. Something almost undefinable, as if off to the side but when head is turned its not there, but nevertheless its somewhere. An even, consistent, sort of fatigue. A vague feeling that something is not quite right. The fatigue of low thyroid that disappears with the aid of a little white tablet.
And now the roller coaster of pollywhatsit. That peculiarly deep fatigue that leaves one staring at the wall. A mixture of mental and physical fatigue. A feeling deeper than lethargy that somehow prevents any action at all. Knowing that there are things to be done but mentally incapable of translating that into any movement. Contemplation of a simple movement draws the conclusion that its too hard, and not worth the effort. Deep, unfathomable, overwhelming, relentless, fatigue. Round and round in circles, neither mind nor body willing to make the first move. Beyond help or encouragement, nothing can overcome it.
But it comes and goes. Some days are better than others. Its also cumulative. Overdo things and there's a cost. Like a saw tooth, a long slow climb followed by falling off the precipice to start the whole process all over again. Hard to put a finger on the cause. Its just there. Having to wake up and test the waters to know what the day will hold. A fatigue that one isn't in control of.
And at other times mentally alert but unable to concentrate or problem solve. Not tired, just not working. A different, pred induced, fatigue. Consistent and persistent for days and weeks. Brain fog. A feeling of not being able to mentally punch a way out of a paper bag.
Hard to separate, but add in a state of mind that swings from acceptance, through hope and back to denial, with pred highs and depression lurking. All designed to confuse and confound.
I guess this has been festering in my mind for a long while. At first I read "fatigue" in these pages as just another word. But then it seemed different, difficult to define, meanings were attached to it. People seemed to know what it meant, why didn't I - I seem to have that problem with lots of words.
And eventually it dawned on me. Just like when people tell me its raining I have no way of knowing if its the slow steady damp soaking rain or the short sharp downpour and flash flood. Is the fatigue mild or deep, is it consistent or up and down, does it last forever or relieved with sleep, is it physical or mental or both and do the proportions change, what are the things that change it, and so on through characteristics I haven't yet recognised. And there's nowhere to read about it.
I have the same difficulty with pain. From the dull persistent ache, through something a bit more localised, to the sharp screaming pain, with associated colours to help describe. Ask my children and all they knew was "it hurts". But that's for another day.
I can tell the difference between muscles stiff from polly and muscles stiff from exercise.
But somewhere in the above is a light and tunnel sort of thing. If my all consuming polly fatigue is up and down like rolling hills rather than a flat featureless plain then somewhere there must be something I can do to command the high ground rather than languish in the valleys. And commanding the high ground is how battles are won.
The language we use, I use "roller coaster" a lot, "yo-yoing" appeared further up this page, "highs and lows", "spirals", probably a few I've missed, provides a source of hope. If it changes it can be controlled, or at least managed, if only we can figure out how. And I don't want to build a freeway that cuts through the hills and bridges the valleys, I want a road along the ridge tops.
Which in a very rambling sort of way gets us all the way round to all the little tricks we have around pacing, and breaking big tasks into little tasks, and doing something that is achievable, and resting before we collapse. And managing the pred so we are just at the Goldilocks dose between pain and side effect. We can change our diet, and observe the effect on our fatigue. And we can do whatever exercise we are capable of without overdoing it. It all adds up (which is much better than subtracting down).
So, yes Ron, sorry there isn't a magic bullet that can vanquish our fatigue at a stroke, but there are a myriad little things we can do to manage it and reduce the effect it has on our lives.
And just like the rain, it eventually stops. At least that's my version.
On a more mundane note. I was pollyed while polishing our truck (the one we lived and traveled in). It was bright when I finished. I don't know if that counts as bright.
I started the bedtime dose when I found out, two months into PMR journey, that you weren't supposed to take calcium and pred at same time (like your thyroid med).
There is a research project ongoing at Aberdeen University looking at the specific fatigue of PMR