Fatigue: Prednisolone has definately helped with... - PMRGCAuk

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Fatigue

jaycee444 profile image
29 Replies

Prednisolone has definately helped with the pain I was experiencing with PMR. Was on 15 mg for 7 weeks then have dropped to 14mg for the past month and all has been good. From the start of my diagnosis I have suffered from extreme fatigue. I am wondering if it is 'normal' with PMR to still feel this even though Pred is helping with the inflammation. At times the fatigue is overwhelming and all I can do is sit and take a nap. I am finding my energy levels so low that it is sometimes difficult to do the tasks around my home. The spirit is willing but the flesh.........! I have regular blood tests which seem ok apart from borderline deficiency Vit D for I have been taking a supplement. I also take Calcium and Vit K2. As I was such an active person pre PMR I am finding it particularly frustrating......

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29 Replies
Marijo1951 profile image
Marijo1951

Yes, the fatigue is real and enduring. When I started pred I found the pain and stiffness went in a way that seemed almost miraculous, but the profound tiredness remained and has never left me. Pacing and not being too ambitious about activities seem to help overcome the worst of it. You just have to accept that it's there and it's a big part of the condition. I'm just so glad that when I was working and had a bit of spare cash, I bought a really super sofa which is always there for me to stretch out on.

Daffodilia profile image
Daffodilia

I get some aches and pains now reducing preds but also need two naps and want to go to bed early

scats profile image
scats

The fatigue and resulting frustration is there for us all. Try searching the forum for ideas on pacing and "spoon theory".

I have a stool in the kitchen to collapse on and seats in the garden where I usually work so that when my body has had enough, I can give in to it. Then there is always the sofa as Marijo says and I try to have a nap on the bed every day after lunch, to build up reserves.

Acceptance of this change in my ability to do things was the most difficult to over come for me.

SnazzyD profile image
SnazzyD

You’d think wouldn’t you that if the inflammation is controlled then you’d feel ok, but it doesn’t seem to work that way. I see it as cooling the lava to keep the village safe but the volcano is still roaring away. The body still wants to attack itself and/or the causative agent is still at work, which will go in its own time. When you get to much lower doses the adrenals can be sluggish which adds another layer of fatigue on. I just have GCA and 2mg 2 years and 4 months later I’m still taking a nap, albeit not the 2 hours I used to have.

aladymo profile image
aladymo in reply toSnazzyD

“Cooling the lava ...........” great analogy✔️

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Have a look at this link -

healthunlocked.com/pmrgcauk......

Fatigue was my main issue with pmr before and during pred. It's never gone totally but fluctuates in its intensity. If I overdo things, have a minor infection, eat too many carbs or if I am stressed the fatigue roars in.

Cyclegirl54 profile image
Cyclegirl54 in reply to

That’s me too!

PMRpro profile image
PMRproAmbassador

Fatigue is an inherent part of almost all autoimmune disease and is due to the underlying disorder of the immune system that causes the inflammation. The pred only relieves the inflammation and so improves the pain and stiffness - it is a management tool for that but doesn't help the fatigue except sometimes at higher doses where the euphoria-type side effects makes some people feel like the Duracell Energiser Bunny. The conundrum is that for some people pred ADDS to the fatigue.

The real illness chugs away in the background, still attacking the body tissues - and producing an environment in the body which makes you feel ill. The fatigue must be managed separately by you adjusting your activities and lifestyle. There are several different sorts of fatigue and they need different approaches depending on which you experience - everyone is a bit different.

The links in this post provide information and analogies that may help.

healthunlocked.com/pmrgcauk......

It includes the spoons theory as well as an article about the different types of fatigue and a link to some excellent publications about managing fatigue. The names are for various a/i disorders but the fatigue applies to us all.

markbenjamin57 profile image
markbenjamin57 in reply toPMRpro

Thank you PMRpro, I think a lot of people don't realise this. For me at least, the DF (Deathly / Overwhelming mental and physical Fatigue) is by far the most challenging symptom of PMR and / or the management of it with Pred. My rheumy tells me that it can also be due to steroid withdrawal - even if PMR pain and stiffness are under control.

PMRpro profile image
PMRproAmbassador in reply tomarkbenjamin57

I think we all often point out that adrenal function lagging behind the reduction in pred also leads to fatigure. Depends on the dose the person is on.

markbenjamin57 profile image
markbenjamin57 in reply toPMRpro

Yep..

jaycee444 profile image
jaycee444

Thank you all for your replies and suggestions. I do actually feel better knowing that the fatigue is something to be expected even though the inflammation is controlled with Prednisolone. I was beginning to wonder if it was just me as I did see about 'Pred High' and thought that maybe I shouldnt be feeling so shattered. I am prepared to adapt my thinking and I do pace myself. Living alone doesnt make life easy at the best of times with both house and garden to maintain. I think if I leave the dust till its thick enough to roll up and dispose of in one piece that might solve one problem lol....

in reply tojaycee444

That's my plan! It's the dog that is my main dirt and dust carrier and leaver but also my fatigue reliever. It is hard to maintain things when alone. But on your good days don't be tempted to catch up too much, unless gardening is your passion. Good days for me mean fresh air.

jaycee444 profile image
jaycee444 in reply to

My dog is my main priority and walking him not only gives me the exercise I need but is a stress buster as well so. He is entering his senior years so doesnt need the miles of walks we used to do pre PMR. He is also very understanding if I am grumpy and there if I am in need of some comfort so all in all life is not so bad .......

scats profile image
scats in reply tojaycee444

That's rule one in the PMR housework manual. Rule 2,on a windy day open front and back doors and watch the dust roll out!

Oumaof2 profile image
Oumaof2 in reply toscats

🤣🤣😂😂 I like that scats

YuliK profile image
YuliK

Most of us suffer the extreme tiredness. It is most certainly from the PMR. Lack of calcium is also a culprit for intense fatigue.

Try and not to rest too much. I find giving in to the fatigue makes it worse...

As PMRpro says, everyone must find a balance in how to get a handle on their pmr.

Some days I feel like I could climb a mountain and I abuse that energy. Other days I have to rest a little after every chore.

Feel better dear. Try and find that balance for you. It's there somewhere.

YuliK.

Woolyhead profile image
Woolyhead in reply toYuliK

It can also be Anaemia.

YuliK profile image
YuliK in reply toWoolyhead

Woolyhead hello

Yes, you are correct that Anaemia could also be another cause of fatigue , but from my own previous experience, I doubt that Anaemia causes such a debilitating tiredness as pmr/ Prednisone...

Every case is different, and does, I suspect, affect every individual in a different way.

Cheers

YuliK.

piglette profile image
piglette

As the others say fatigue seems to go hand in hand with PMR. I think the important thing is to realise that PMR is life changing and things do not carry on as before. We do need to adjust our lives to fit in with this. Have the occasional pamper.

Oh Jaycee, l think a lot of us would say the intense fatigue is by far the worst part of the on going part of PMR.

The intense pain, stiffness & inability to climb stairs or get out of a chair cannot be compared to it but once we are on the journey with Pred & those symptoms have been dealt with the Fatigue is the hardest to deal with.

I am currently in bed, Thursday was our usual Granddaughter Day, Friday we were helping prepare for her 1st Birthday Party which was yesterday, l was slumped in a chair in the middle of the action, really wishing l was relaxing on the sofa, so today & probably tomorrow l’ll just have to rest.

It’s the unexplained bouts of Fatigue that l hate, the sudden ‘l’ll have to sit down before l fall down’ type.

The way l feel today is explainable, not nice but l know why!

Take it Steady! 🌷

MrsN

powerwalk profile image
powerwalk in reply to

Couldn't agree more. Went to a concert last night and today I feel like I have been hit by several buses. Everything is going over my head because of this horrible fatigue. I thought giving up work would help but it isn't. I just get to not have to sit in work miserable with it! Best wishes.

in reply topowerwalk

PW, revisit that work issue in the morning and decide if better or worse.😉

powerwalk profile image
powerwalk in reply to

Ha, yes. I dont know how i'd even get myself ready!! Maybe a cup of tea in bed then!!!

in reply topowerwalk

It’s awful that we have to ‘pay’ one way or another if we try to do something ‘normal’

I hope you enjoyed your Concert, so just chill today & tomorrow, play your CD’s & relive! 🎶

Woolyhead profile image
Woolyhead

I know fatigue and PMR go hand in hand, but I would say to anyone suffering badly from fatigue go and ask for a blood test for Anaemia. The blood tests you have here in the UK do not automatically cover Anaemia. I requested one as my Doctor thought it was all down to the PMR. It came back, I was badly anaemic. I've been on medication for it for 8 weeks now and feeling much better.

YuliK profile image
YuliK in reply toWoolyhead

Good advice woolyhead. ☝️

👍

AmberAliona profile image
AmberAliona

Hi, I was diagnosed with PMR nearly 2 years ago, and I still have the same problem with fatigue. There are some days I can barely move with tiredness, and while our shopping get such an urge to just lie down wherever I am and go to sleep. I do now have a nap every afternoon. Anything from 1-2 hours. The pred helps with the pain, but the exhaustion seems to just go on.

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