Has anyone found anything that helps with exhaustion and weekness ?
I have had an awful few days everything is such an effort even eating so weak
Start with reading this and then be honest with yourself. ARE you pacing? ARE you resting? Or are you poking that gorilla into activity?
And then think about your current dose and how you are reducing.
As always, timely and spot on!!
My fatigue seems to be getting worse...not better... come on now!!!
I'm getting tired of this PMR....these golden years are getting pretty tarnished!
Same here.I look at the cushions and think they need puffing but can’t muster the energy to do it.and don’t get me started on the dust.pmr just do one 😂😂😂😂
Me too. This week has been dreadful
Golden years? I think more like scrap metal... tarnished indeed..with a lot of rust
scrap metal-- that is funny! But how true. I am 81 yr. stonecreek
Thank you for this. I was diagnosed with Sjogrens years before PMR but have never seen this article on tiredness before so shall keep it for reference!
Unless there is some other problem brewing, it’s usually a sign that you are over spending on your physical resources and need to rest more.
Thanks I did some gardening two days ago I felt a bit if after but today I have had an awful day
Feeling dreadful I won’t be doing that again But it is so frustrating
Gardening has been my downfall many times, not least because the effect tends to be delayed by about 48 hours, by which time I’ve been able to convince myself that this time it’ll be different and do some more.
My husband is very good but has health problems himself so I try to help , I must learn and pace myself more
That must be hard. I think my PMR possibly developed when my husband's hips needed replacing and he wasn't able to do as much. I'm not sure how I'd cope if he wasn't so fit and active.
My husband has balance problems and two heart attacks in the past so it gets very frustrating when things need doing we were both been very active when younger. We have 3 brilliant children but all have their own homes and families to upkeep
Getting older is no fun
Don't usually say this... but No SH*T!,
Love you all, jerri
Like the pacing... Like snazzyD i have been fooled by the 48hrs it takes for the fatigued muscles and head. Unless its practically impossible i build rest days between events and activities, however small they seem. Then if you get to no problems after 48hrs i build up stamina. Its still up and down but so is everything.
Exactly! The first day of garden work goes so well you do another bit the next day, and then the 3rd day you’re out of commission! Fortunately the 4th and 5th days are better. And maybe we learn from day 3 not to do a Day 2, or quite so much on day 1.
Learn? No, because I think, “this time it’ll be different”, sigh. To be fair this time two years ago, all I could do was sit on the ground and do weeding for 10 minutes, that was my lot. I like to see my overdoing it as a ‘celebration of my improvement’ and other such cobblers to justify it.
Aha!!! The post gardening bonanza revenge!!!! Works every time with me 😱. An attack on a pampas grass left me with costochondritis for a week or so and deathly fatigue for a couple of days. 2 days of gardening at Easter, on account of an over enthusiastic OH determined to get the garden tidy and me forgetting when to stop, led me to hobbling around on one leg for the next 2 days and using ice packs derrr!!!! . However, I have bounced back after a couple of days of TLC and am back up to walking several miles a day. Just as well, as we unexpectedly adopted a 1 year old sprollie last Thursday in addition to our 10 year old collie, so walking is mandatory!! PMR, ignore it at your peril, but don’t despair, most things are possible in moderation. Hope you get back to gardening soon and good luck on your PMR journey 😀
I don't think I could rest more. Today's big activities: cleaning out the cat's room (aka my laundry room), dressing nicely and going to a tea and short evening service at our church hall.
Yep, that's it. Having trouble mustering the energy to warm up leftovers for supper. Sigh. But at least the sun is shining and I did have a short walk.
I wish I knew of something to help the exhaustion and weakness. I’ve had an awful few days too 🙁
I think mine is a combination of factors, family staying at Easter, a bit of garden clearing, a hint of a cold/throat and 5.5 worked and 5 didn’t. I tried to catch things at 6mg, but no go, so did a quick 10, 9, 8, 7, 6.... and oh boy when I hit 7 I hit the deathly fatigue 😮 Cleared the thigh fizzing and pain and most of stiffness, but 💤💤💤!!! Plus a new nasty left shoulder pain which is responding to paracetamol so that’s not PMR, but can’t lie on that side currently. Obviously I’ve done far too much and PMR is biting my bum again, it really won’t let us forget for long will it? I’m feeling very ‘woe is me’ and grumpy. I also wonder about the weather, after a glorious Easter it has been very changeable and gusty. That or my stupidity 😳
Yes and eating is a chore currently, but not eating will deplete our batteries, so here’s to a better day tomorrow Emerlad 👍🏼
I’m having a terrible time with my left shoulder too....can’t really sleep on either side and not a “back sleeper” to begin with. Tylenol helps, but still not getting a good rest each night (sigh).
Spring is such a challenge activity-wise, warm weather makes me want to rake, dig and prepare the gardens.
You too? Oh what a bunch we are! Yes my shoulder wakes me at night, it doesn’t help. Trying codeine tonight 🤞
I’m just watching the mess that is my garden, but the birds and foxes aren’t complaining, so I enjoy watching them too.
See my reply to Soraya_PMR
I simply have nothing to say, but Me Too!
You three? 😂 Not another left shoulder? We couldn’t make a decent body between the lot of us! 🤣
I’ve been there done that with the shoulder(s) Both as l’m like that!
Amitriptyline is the saviour of shoulders, a good couple of hours before you go to bed. And, more pillows, l used to make a bit of a den of pillows so l could slide my arm in but not lay on it, l’m a side sleeper too! I had surgery on one shoulder & a Cortisone Injection in the other one.
I had surgery on my right shoulder now my left is not too good
I think they are a bit twin like these shoulders & both behave the same!
I have amitryptylline in the cupboard; was the GP’s first solution before pred. Wasn’t a solution for me though! Gives me dreadful nightmares, plus at higher doses (given years ago as pain adjunctive for slipped discs) drops my BP. And I’m not feeling this is my typical ‘muscles all tight’ PMR add-on. I think I may have ‘done something’ to my shoulder, maybe under the protection of the 10,9,8mg of pred! Didn’t feel a thing at the time!
And for the sake of my bulging discs (yes it’s still there according to December’s MRI) I’m a one-pillow-only-girl. Need to be flat for my back, and more than one cricks my neck. Maybe I can concoct something with my special neck pillow +1..... but the last time I changed pillows I invited BPPV back. Oh how contrary/what a fine balancing act this is! I wonder.....half a tablet of amitryptylline????
I had 10mg of amitriptyline last night having not had any for almost 3 months now. It was yummy. It somehow stopped restless legs which are obviously something to do with bulging dicss.
I had to pile Pillows around my right shoulder and arm to stop the pain during the night. I have slept with a soft neck support on and off. My problem with that is overheating!
The thing with Amitriptyline is to take it early, l take it no later than 7.30pm or I’m useless in the morning, is it the 10mgs you have, it’s worth a try.
Trying to find a comfy position at night is no fun, we’ll have to learn to sleep upside down in some sort of weightless bubble!
If a bubble like that came out i would be first in tbe queue.
I take amitriptlyline for peripheral nephropathy which has suddenly developed,
The amitriptyline does the job but the side effects are not good. Drunkenness, dry mouth, sleepy, not being in this world.....if taken at night, nightmares etc etc....
Don't know what the answer is. Together with PMR, have some really bad days.
But hey ho what do you do, just get on with it I suppose.
The "den of pillows" really does help. Emerlad_70, me, too. Left shoulder and gardening and terrible fatigue the last two days. At 6.5 on my way down from a flare, so that doesn't help. Another thing that helps me on shoulders is a little exercise a physical therapist gave me. Press down as hard as you can with both shoulders to a count of five and repeat five times several times a day. I've managed to avoid bursitis a lot using the technique. It makes the back muscles remember to get to work and takes pressure off the rotator cuff so it doesn't get as angry.
LEFT SHOULDER PAIN GANG! Are you all right handed?
I have a personal theory that my R shoulder has never been quite as bad because the musculature is better developed????
Go on! Disprove my theory 😉
Yep. And, after raking leaves out of my perennial garden, it was the left shoulder that complained. It says, "You can't use me that way after letting me sleep most of the winter."
Left Shoulder ~ Right Handed!
Right Shoulder didn’t need Surgery, recovered after Steroid Injection & Physio
I too have a left shoulder problem - due to have a joint replacement in two days time. Also I am right-handed! Very interested in your theory
Ok I will🥴
I am left handed, X-ray shows left shoulder pain is OA, booked for injections. I use my left for carrying shopping etc., so should have developed strong muscle, but it really gives me hell the next day.
Writing this from my pillow nest, changed the bed in three stages today, sheets off, later bottom fitted sheet and all those pillow cases on, then 7.00pm duvet cover. 8.00pm in the bed. Woke at 11.30 to take Pred, see what tomorrow morning brings.
After due reflection, I’m not allowing shoulder pain due to OA, as that is degenerative/overuse of your left handedness! Not muscular. 😜
Any LEFT HANDED RIGHT SHOULDER PAINS?
Oh the bed change! I knew I was improving when I could change the bedding in one attack! I can manage 2 singles now 😊 AND sort out the attempt by OH 😂 to do the other 2 beds.
Is your left shoulder pain a result of PMR? as it is usually bilateral, If so, I see and concede your point. But others have mentioned shoulder ops, that surely is OA.
Thought mine was PMR until I asked for an X-ray. And yes I do have right shoulder pain, but it is mild in comparison to left. Most people tend to have a dominant side, which gets more than its fair share of use.🤝
Yes my left shoulder pain is PMR, stiff neck was the start, gritty joints, then left shoulder before the hips, then finally right shoulder joined in. Left shoulder is always worse than right, more intense than right, tighter than right, more frequent than right, and where I feel steroid withdrawal more than right. I’d not be surprised to find there is something else going on with the left shoulder, but up until this recent pain my thighs had taken over as PMR indicators. Then ouch! Left shoulder joined in. I’m wondering if it was partly a flare niggle from too low pred plus SW from my ‘catch the flare’ and quick reduction. Is that even possible? Anyway, today it is much improved, only 2 paracetamol this morning, and so far so good. Who knows with this ‘disease’, just when you think you’ve worked it out it mutates and niggles somewhere else.
PS I was joking, any shoulder pain is valid, but my theory re musculature was aimed at PMR L/R handedness. You’re right, surgery is likely not due to PMR problems, although I have read of bilateral shoulder problems getting surgery which are EVENTUALLY diagnosed as PMR 😮
Hope it doesn't develop into something else, Pred. is very good at disguising other conditions. Have a good night.
My shoulder problem I have surgery on was for rotator cuff injury a tendon problem
Sounds interesting, clieder. But can you explain HOW you ”press down with both shoulders”?
Are you sitting, standing? Arms at sides? Do you just drop your shoulders, or are you pushing down with opposite hands? I can’t visualize it, but want to try it.
Sorry your feeling so bad as well luckily I sleep fairly well not that it makes any difference to the exhaustion
I did have a good nights sleep last night, just woken at 9am 😀 The codeine obviously did something 👍🏼
Any one of those things would make me feel tired!! And this "spring" weather isn't helping. I feel sort of sore all over and it is this weather making the flare worse I think - not an infection but something. But it is nearly May and by now we do usually get lovely weather - last weekend was not too bad but this weekend is more like November - +4C at lunchtime!!
“not an infection but something.”
That’s it exactly! 11C here, so not the chill you’ve got, but gusty winds from all directions.
Shh! Don’t tell anyone else, but on Good Friday I undertook a tour of the War Tunnels, 1.5miles of uneven floor in semi-darkness. I’d taken an extra 1mg pred as a precautionary measure, but.......! I couldn’t keep up with the ‘old’ girls and boys, and I suspect I was an irritation to the youngsters as the guide refused to speak until I’d brought up the rear. However it was very interesting and 4 ‘twenty somethings’ that I took thoroughly enjoyed their 2 hour history lesson, despite some scathing comments before the event. And then took them to lunch, and later for evening meal...... and the gardening.....and helping an elderly neighbour......and yes I’m my own worst enemy.
Just the walking on an uneven floor takes it out of you with PMR. Never mind the rest!
Where are they?
Sounds interesting ... I'm a "cold war" military veteran and this sounds intriguing to me. Until recently, I thought I would never return to Europe again. Now, I'm in the process of planning a trans Atlantic cruise to Southhampton via Normandy, France. I will put the Ramsgate Tunnels on my "must do" list.
Did you read the history page? Apparently there were plans to reopen the tunnels during The Cold War.
If tunnels are your thing..... great tunnels around Dover Castle, wartime tunnels where Operation Dynamo was planned, plus the underground hospital, and also the fantastic castle.
One day I will go to the WW1 cemeteries and hear The Last Post at the Menin Gate.
If you get to Ramsgate, I’m 5 minutes round the coast with a goodly stash of pred! 😉
That brought a lump to my throat! I am not sure i would get through the last post. It would be interesting to see the graves of a couple of great uncles from.ww1. At least you can find them easier now online.
I will never forget my first sight of a war grave cemetery - over 40 years ago now. THAT was when I realised what it had been - and what the (now) EU means.
Yes. It seems particularly pertinent at the moment in the current climate.
Europe was a very different place in the early 70's. I will never forget the overnight train to Berlin. Our base in Holland was only going to play a basketball game with the base in Berlin. When we crossed the border into East Germany we were given instructions that we would be confined to a single train car until our arrival in Berlin. If we got off the train at any stop enroute to Berlin we would be shot. It was surreal---at every stop there was an East German military guard with a gun!
We drove from near Nuremberg to Berlin in the mid-80s - through the winding border channel with East German guards and their large guns pointed at us, the first section of road was edge to edge potholes with a 15km/hour speed limit (why you would have wanted to do more was beyond me) and then the motorway where they had a habit of setting up temporary speed limits to catch you out and if you arrived at the crossing to Berlin early or noticeably late you ran the risk of being arrested! We crossed over for a day a few weeks after the wall came down - it was like a journey back to childhood, the UK in the 1950s!
I know just how you feel Soraya. We did some decorating last week and as my OH is not very mobile now it was mostly down to me. Last few days I’ve felt so tired and achy. Today I can hardly move my head with neck and shoulder pain. I’d just got down to 9 mg and don’t know wether or not to increase for a few days.
It’s so hard to know isn’t it. I did the quick 10,9,8,7,6 but that wasn’t due to the tiredness, that was to resolve the PMR comeback. The tiredness really hit at 7&6. Thursday, Friday, Saturday I had to get up to breakfast the students at 8am, then I was back in bed by 9! I slept my mornings away until 2pm each day...... Today, Sunday, I think I might actually have caught up as I don’t feel like a dead woman walking. Now I must continue with sufficient rest.
People who do not have PMR have no idea the exhaustion we feel. I am trying to cut down on my prednisone again!!! and every time it is a struggle with the energy. I am even going down 1/ 2 mil at a time. I am one of those people, I know, that will take a long time for that cortisol to kick back in. Reading all these posts is a blessing to all of us. We know we are not making this up and our struggles are real. To look at us we look like nothing is wrong with us. You all give me more helpful information than my doctor does.
I think it’s accepted (by docs) that there may be fatigue in the build up to diagnosis (I had what I thought was lazyitis, but that was as nothing to the fatigue of the last few days) and then we get treatment (pred) and everyone (doc’s, family, benefit agency!!!) assumes we’re being treated so we must feel better. The docs think we all have pred euphoria when we start pred, whereas actually it’s close to exhilaration that we can move, we aren’t dying/becoming paralysed/being condemned to a life of pain, but that is short lived when we start reducing 😞 and then of course we ‘look so well’........Hey, looks can be deceptive, don’t judge this book by its cover, I actually feel like s#!t sometimes!
What dose are you on Schurch?
Me too. If I can accomplish 2 tasks per week, I think I am doing pretty well., but it's not much. I am talking about a trip to the supermarket, the pharmacy or hairdresser. Or getting the laundry done. I don't know how many medical/dental appts, I have cancelled at the last minute b/c I just can't get myself together to drive half an hour or more; I must ask myself what is more important? Resting quietly at home or getting to a routine follow up appt. I generally do not find dr. visits very productive so they become a lower priority: that is not to say I am neglecting myself, but no more up and out for me early in morning traffic on terms of office schedules, to " hurry up and wait." You are by no means alone.
Carefree spontaneity seems to be gone. Doesn't feel too good, does it?
But I don't know if I need to go up on my prednisone or not. 4 mg. is a low dose, and I've worked hard to get there from 16; am stubborn and don't want to raise my dose now. Pace, pace and pace some more.Good resting.
A trip to the supermarket. Yes that wipes me out. I prefer to visit my (large) village to shop at the baker/butcher/veg shop. Theoretically it’s more work than a one stop shop, but a walk, fresh air and the social side seem to make it less of a chore for me.
I do think that we must pick and choose our tasks when we have limited energy, and can hopefully pick those that we enjoy.
Ah Spring .. suddenly everything looks blossomy and full of promise, and in my case needing lots of work in the garden to make it happen. I wonder whether after a mostly sedentary winter we all go hell for leather with enthusiasm but without any build-up - I've spent weeks creating a veg patch, rather slowly (I thought) and I wonder why I feel so utterly tired and as though I've gone backwards in recovery.
4 years in, at 8.5mg, my leap into activity just doesn't match my post-winter depletion of bodily ability, it's more an emotional response - it's sunny, there are much longer days and it's counter-intuitive (and very boring) to draw the curtains during the afternoon for a lie-down; by 8pm I hit The Wall of DF. Yes, I know, but sometimes you go with your emotions rather than always being sensible, how tedious that becomes!
It's now raining so I can stay in bed and have breakfast this Sunday without a shred of guilt - oh, there are tomatoes in the shed that need potting on, and..and..
In Germany they call it "Spring lethargy" - I wrote about it recently. The medical explanation is the body getting in gear and lagging behind, almost adrenal insufficiency-like effects. And the clocks changing adds to it just as the body gets used to change in light arriving ...
Far better explained here:
They say gone by mid-April - but the climate change effect that is bringing a later onset and clearing of winter seems to be shifting the timing. When we first came here we went down to Lake Garda in mid-late March with comfortable morning temps and mid-20s in the afternoon - not like that any more. It rains and it is colder.
Very interesting, thanks.
The mind is willing but the body is weak. That’s me. Well actually the mind hasn’t been too willing either lately, definitely ‘down’. I shall attach this to Spring Lethargy as an alternative to the tedious ‘it’s PMR’ or ‘its pred’.
Thank you for the links, I had no idea you could suffer from reverse SAD - I did wonder whether it was adrenals although at 8.5 mg unlikely. Feel a little more like a spring chicken rather than a dead duck, now.
Everything medical happens to me in March! Now I know there may be a reason.
This explains why I am more tired than usual. I did not know there is spring lethargy.
Not really a helpful reply..just me too! I recently dropped to 5mg..very very slowly ..and spent March completely knackered.I had a long day shopping,swimming and more shopping last week,and had to sit down on a bench,I felt so feeble I couldn't make it to the car park! So I think in that case ..self inflicted.
I am going to contact my nutrionist again as last time ( over a year ago) her suggestion of an anti inflammatory diet was really helpful..perhaps she might have some more good ideas! The exhaustion is accompanied by a raging hunger..oh happy days..🙃
and a me too, too!
Exhausted, oh yes! It was 3 1/2 years ago the ‘fun’ started. PMR diagnosed and put on 10 mg. in two days I was pain and stiffness free, bliss. Since then I’ve managed to get down to 8mg twice but have had to return to 10mg. Last year my husband had a knee replacement, not a chance of pacing myself, the PMR made itself felt with a vengeance and the doctor upped the dose to 15mg. I’m now back to 8mg using the dead slow method. Admittedly the last 3 weeks have been intense, with a five days away for a wedding, intensive social marathon. Home for Easter and a lot of church commitments. A friend came to stay for 5 days, she does muck in and doesn’t expect to be waited on. The last few days have been so hard, I’m exhausted, dragging myself around, limbs feel like lead weights. I’m tired, bad tempered, fed up. We are getting ready to go away in our caravan. I do find life in the van easy, smaller space and no one expecting me to do stuff, I can be truly lazy. I’m hoping it’s the fact I’ve over done it and once we get away I will start to feel better. I’ve very little pain so I’m hoping not to have to increase the dose. Will hopefully stay at 8 and when we get back in a few weeks I’ll try slowly decreasing again. It’s a rocky, frustrating road we’re all on at least we know we’re not alone.
You have to do your part - you HAVE to pace yourself. Pred only does part of the management:
And when you get the hang of that life becomes much more even and pleasant. You can't have everything- but you can have a decent quality of life. Provided you do YOUR bit!
One of my strategies is to rest before I need to do something challenging such as a swim meet or extra duty in the garden or a meeting or going to the doctor or shopping whatever and then make time to rest afterwards. This works for me. Trial and error brought me to this plan. I call it the before and after rest to eliminate or make the deathly fatigue not so deadly. It just takes planning ahead.
It helps me too - but there is a limit to how much you can store up in advance!
That is true.
Yes, normally pacing is the name of the game. There are just times when events do take over, you know it’s not going to be the best policy and you know you’re going to pay. Hopefully as pain hasn’t reared it’s ugly head, inflammation isn’t building up and I’ve just overdone life. I’m back to spending hours on the sofa.... it’s very comfy! You do get very fed up of watching friends and family living normal lives.
Eating has NEVER been an effort for me! Just teasing .. I am so sorry for your exhaustion..it is terrible when it happens. I have found sitting OUTSIDE even for 10 minutes seems to revive me. A walk if you can manage...but just some fresh air and then sleep sleep sleep of course.
NO sugar also helps. (as cruel as that is!)
I get that way often. Seems almost impossible to complete any task, I find it hard to put one foot in front of the other & My head feels like it’s all foggy & this happens even when I’m not having a flare up. Last 2 or 3 days then I’m good again.. Be nice to know if everyone has these spells. I’ve had GCA 6 years & PMR 2 years.. Good luck, We are all in the same boat.. Betty Snell.
They tend to happen because you overdo it, exceed your limits, and have a bad patch. During that you rest because you have to - so you start to feel better, you do too much and the cycle starts again.
I don't want to sound as if I am crowing - but having learnt what I can and can't manage I have a very much smoother life. When I MUST do something I know is probably not a good idea I ditch other things to compensate. Travelling is something I spread out - keep each day's dose short or not too energetic, don't plan to do something the first day you "get there", that sort of thing. And when it all goes far better than I could have hoped for - as was the case in our China and Canada holidays - I am grateful and pleased.
Slowly, OH is becoming the one with worse limitations - it is frustrating but is also an affirmation that actually, it does happen to everyone eventually - and that acceptance is better than bitterness
First I'd like to offer my sympathy to you as I also suffer from what they refer to on this site as the deathly fatigue, trademark DF. For me the DF is worse than the muscle stiffness that I'm dealing with. I agree with others who have commented that you have to pace yourself. I try to get a nap every afternoon if I can. I've had days where I've been so exhausted that I could barely prepare a meal, do any grocery shopping, and doing laundry was out of consideration. But my situation has waxed and waned in this regard as I go through periods that are somewhat better and some that are a little worse. I wish I could offer you a cure for the DF and for myself as well but it would appear that this is just something that we have to endure as we make our way, hopefully, to the other side of this miserable disease. Keep up your hope. At some point this will all come to a resolution. And by all means pace yourself and get some rest as there is only so much that we can do as we battle on. With my best wishes to you from Atlanta, Georgia U.S.A.
Me too- the DF to deal with. What I do is limit myself to just two things every day: like shopping in the morning, some gardening in the afternoon or some batch cooking for the freezer to ease the week's meal preparations. Then if I'm feeling ok, sit-down activities in between like studying, work on the computer etc where my body at least is resting. Don't do anything after 4pm. Go to bed really early too- or at least get into bed early for a bit of reading before sleeping.
Pacing is the way to go, just as PMRpro says. The most difficult thing I find is accepting this is the way it must be. Trying not to feel guilty doing precisely nothing and lazing in a deckchair. And forget the housework.
After three days of doing nothing am feeling a little better no longer so exhausted
which is proof that resting, pacing, balancing active v quiet days is the way to go. We just have to listen to our bodies (difficult I know- not too good at accepting how things must be myself).
Yes so difficult when you have always been fit and strong
Fitness and strength hiding for a while. Pacing best way to find them.
My problem is, I feel OK, start doing things, then wham, everything takes ten times longer than it used to. But I'll just finish it anyway (sheer stubbornness and frustration and still not realizing how debilitating GCA/PMR is) and by that time everything has turned to wobbly bits of jelly!!! suffer for the next 2 days
Yep. That's the way it goes for me. I am getting better and try and take more notice of what someone on the forum called SDOFD ....sit down or fall down.
Yes I’m the same I keep going but now I have realised I need o listen to my body and pace myself
It’s s frustrating though
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