So many folks on here speak of having extreme fatigue, and I haven’t had any with my (apparently) mild case of PMR.
How common is fatigue in PMR sufferers, and is it more troubling/disabling than the stiffness and pains for these individuals?
Fatigue and PMR: So many folks on here speak of... - PMRGCAuk
Fatigue and PMR
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OutdoorsyGal
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Hi ODYG, you have probably seen people write of the deathly fatigue. It was/is a big part of my PMR. As significant as pain and stiffness at least. Sometimes more so. Pred can reduce pain so you can get on and do things but if the fatigue really strikes (for me) pred doesn't touch it. It's sit down or fall down. If someone said there's a thousand pounds/dollars outside the front door I would neither be interested in it nor able to get it. And that's on a very limited income!!! I don't know if you have ever had a real bout of flu? It's like that. It is hard to describe how debilitating it is. It can just come on too. If I have been out with the dog I have 5 step days and have been known just to lay where I land. Sorry to Witter on.its 2am in the UK and yet another sleepless night beckons!!
Bird-67 in reply to
Hi Poopadoop,
I too am in the UK and having yet another sleepless night.
This is my first post as haven’t been properly diagnosed yet but am being treated for GCA.
I am more fatigued than in pain at the moment.
I am awaiting Biopsy and CAT scan results and am on Predisolone as a precaution.
Was pleased to find this site as will be very helpful.
in reply to Bird-67
Welcome! What dose are you on? You have probably read that it is difficult once you have been on high dose pred but if it helping symptoms and your sight is protected then who cares!
I have PMR so only been as high as 15mg, apart from an accidental double dose of 30. That did jangle me so if you are at the usual dose for GCA then sleep probably comes hard. It is hard being awake in the night. I am a life long insomniac. Usually I do get sleep as I have high dose sleeping pills but Dr put me on another drug that's messed it all up.
Will you get some sleep or will it be an all nighter?
Bird-67 in reply to
Thank you for responding Poopadoop.
I am sitting having a cup of tea at the moment but will try to get another couple of hours before it gets light.
I started on 60mg Pred 3 weeks ago and tapered down to 40mg a week ago then in a weeks time I have to reduce to 30mg then see the hospital consultant again hopefully with a diagnosis.
I also suffer Anxiety and Depression and am in the middle of changing medication for that so not much hope lol.
in reply to Bird-67
Oh dear. I can sympathize. I just changed from citalapram and Amitriptyline (,latter for pain/sleep) to duloxetine for neuropathy/anxiety/depression. Dr said should be ok but I took over a month to get the anxiety under control. It's sorted now, duloxetine really helping neuropathy but not helping sleep so may be back to the drawing board.
Bird-67 in reply to
I am on Venlafaxine
in reply to Bird-67
Not heard of that one.
in reply to Bird-67
I'm on that. I have had Bipolar Disorder 2 for decades. Only two weeks ago I was diagnosed with GCA and just know I have PMR so am jangling full of pills. Deep joy :/
PMR and GCA are the same illness - just different degrees, like a cold and flu are both viral illnesses. And the pills to treat them both are the same ... BOGOF ...
in reply to PMRpro
I’m just feeling it all after diagnosis. Most unusual vibes. I am struggling a bit and trying to get out for quiet strolls. I have ear buds to cancel out or lessen overwhelming sounds. Ears are ringing like crazy but I am used to that.
Bird-67 in reply to
How do you get on with it?
I was on it for 14 years then had to change as it suddenly stopped working but after a long break am now back on it again and it seems to be working again 🤞
I don’t have Bipolar Disorder.
in reply to Bird-67
It’s my daytime bipolar medication. Never bothered me at all. My bipolar disorder is like an old friend really and I take two pills for it without fail. The above mentioned and at night 200mg of seroquel.
I’m 67 now and been bipolar2 most of my life. Once I had a diagnosis I was ok. I don’t see a psych anymore as they keep asking the same old thing.
I have diazepam on the side if I get agitated and guess what? I have been. So, my lovely gp has told me to take 5mg whenever I get shaky so I do. 2 x 5mg a day works well and relaxes me.
David
Pollypuds in reply to
Same here😕 it's hard to accept how much it changes day to day life. Not nice at all.
piglette in reply to
I am on 4.8mg and DF seems to have hit my like a train. I do things with my eyes shut as I am too tired to open them, I will lie in bed and want to turn on the radio and just don’t have the wherewithal to stick my arm out and press a button. I feel like I am being really lazy but I just feel too tired to actually do anything. It is a real shock as I have always been terribly active doing things.
DF scenario sounds quite familiar to me. But I'm not happy to hear that it's hit at such a low dose. (I'm on 6mg and hoping to go down before too long) Hope yours won't last long. Was just wondering if it could be the adrenals not kicking in? Maybe worth checking?
Best of luck.
I am sure it is the adrenals kicking in. I did drag myself out to the swimming pool today and didn’t drown!
Me too, can count the good nights sleep on one hand if only had the energy, I used to have medals for sleeping, happy days. DF is by far one of the worst bits of PMR but there are days when I wake up feeling great, for a while anyway. Best wishes for some sweet dreams. 😴
in reply to CT-5012
Back at you. Not much chance really...have to get up at 6 as I have to drive to Somerset. Not looking forward after tonight.
CT-5012 in reply to
Ouch, all the best. 😫
in reply to CT-5012
Thanks. Going to treat myself to a hot chocolate I think. Don't usually but hey ho.
Bird-67 in reply to
Safe driving 👍
in reply to CT-5012
For sleeping I use an amazon echo with spa music all night. It’s superb.
I don't think it's as debilitating as the pain & stiffness as I could barely walk with that. I get the deadly fatigue a lot in the afternoons, & just gave to sit down & do nothing. It also comes on if I try to do too much
If it regularly comes at a given time it does pay to pre-empt it and stop and rest about half to an hour before you would expect it. No ifs or buts, set an alarm and rest. Don't think "I can just manage..." and do another half hour, it doesn't work or it may work once but not more than once. Regularly ignoring something like that can actually be enough to cause a flare as your body says "Enough, I will FORCE you to rest"
Many people say they have good days and bad days - and when they look more closely they discover that the bad days follow a good day when they did more than they should have, the good days followed a bad day when they had to rest.
Hi ODG
I don’t think there is such a thing as a mild dose of PMR it’s just that we all react differently to PMR and the medication. I like you have been lucky with no fatigue or pain. I went through stages where I had headaches and night cramps but these have subsided now as I lower the pred but I am not sure what to expect when I get below 5mg of pred and the adrenals start to kick in, now on 7 down from 30 last October. 🤞
My PMR IS (apparently) mild because it was treated with an 11-month course of prednisone and I have been off pred since 2019 began. And I have not had ANY fatigue or even tiredness. Just stiffness and pains after inactivity, and minor disability (trouble dressing, e.g.).
However, I do still have stiffness after inactivity, along with new pains in wrists and elbows. Don’t know if it’s PMR still, or OA or carpal tunnel...
I’m still pretty functional, and hesitate to start over with prednisone. My blood levels were good in January, after stopping pred.
Hi ODG
Thanks for your reply as I mentioned I haven’t had any fatigue or PMR type pains, however like you I have pains in my wrists but not elbows, more like an ache that goes up and down in intensity. My Rheumy said that PMR only effects upper arms?
I am due to visit my GP next week and will ask him about my wrist aches which only started a couple of weeks ago.
I also have stiffness if I am physically inactive for a few days, I am still working full time and often don’t feel like coming home and going through my exercise program every second day which includes step ups and resistance training, but once I get through it I feel much better. I find it reassuring that you got of pred in 11 months, I am down to 7mg from starting does of 30 in 5 months and hope to be off pred by the end of this year.
I will let you know what my GP says.
The deathly fatigue is real and appalling. You're so lucky to have avoided it and I hope it doesn't suddenly pounce on you. Pred does nothing for the fatigue and, especially in high doses, leaves one in the strange situation of being crippled with tiredness but plagued with insomnia. I have strong sympathy for anybody who has to deal with all this while trying to hold down a job. I'm so glad I was already retired when I was struck.
Hi. I have PMR and GCA. I haven't suffered the fatigue that others describe. I was fairly fit when diagnosed and have lost fitness but am still able to ski, walk dog twice daily, play netball, golf and tennis just at a slower pace. I do have an energy dip at 3 to 5 pm but that passes. I'm down to 5mg now and do miss the pred rocket fuel!
I think this illness is very individual which makes diagnosis and management challenging.
Hello ODYG!! i love your title that's how I would describe myself - we breakfast outside unless it's really freezing or pouring - I do live in Tasmania though!
Until quite recently, I could so relate to your post. I have had PMR for nearly 2 years and for most of that time have wondered what the fuss was about. Trying to reduce prednisone to below 10 mg daily has proved impossible though and I am now back up to 12, MY whole body feels like I'm wearing a suit of armour, my right leg has locked up and I am SO tired I just exist from rest to rest and then BED, where, if i'm lucky I sleep for 5 or 6 hours.
Stay on this forum which is excellent and GOOD LUCK!!
PMRproAmbassador
At the outset I just felt tired, I'd never have classed it as fatigue - just I felt asleep at the drop of a hat in the afternoons! The pain and stiffness was definitely worse. Then last summer I tried methotrexate for a month. THAT was when I experienced Fatigue - definitely with a capital F!!!! Though all through, with and without pred, I have experienced the brick wall version of fatigue where you suddenly can't do anything except sit down or you will fall down!
The first link here is about fatigue - 13 different sorts and they all apply to all autoimmune disease.
'Fatigue' seems to be quite subjective in people's experiences - but most complain of just feeling too tired to do anything - like having a really bad dose of flu. My experience is feeling more 'inert' than 'tired' (I never sleep in the day) although when it is bad my eyelids are quite droopy. I also feel it's like 'seeing' everything through a fog or haze - the distinctness of things is just not there - of course all this is enhanced by blurry eyesight which I attributed to Pred initially but I am about to have cataracts fixed. Another aspect is a capacity to 'focus' or concentrate - this is where the so-called 'brain fog' is like a 'twin' to the 'fatigue' - for me they often seemed to be in league. On the days I feel more energised my brain is also certainly sharper and my body inevitably feels 'better' too.
I have had both cataracts done and still feel like my vision is not as sharp. I am hoping as my pred reduces my vision will get better. Dr has changed prescription to help.
'Inert' is a good word! I'm having an inert day today - just such a RELIEF to get horizontal - despite having done barely anything all day.
It’s pretty awful Makes me feel useless doesn’t seem anything can be done so just try to get rest when I can , I often go to bed feeling so tired then up again in the middle of the night unable to sleep goes in circles sometimes trying to do the smallest things can make you feel totally exhausted.
I did feel extreme fatigue when I was first ill with PMR (along with excruciating pain and stiffness in the mornings) but pred really was a 'miracle' for me - before long, the tiredness, pain and stiffness went... and they have stayed away (fingers crossed!).
At times, I find it more disabling. I have tapered to 3.5 mg from 40mg of prednisone. In the early afternoon, just after lunch, I feel almost overwhelmingly fatigued. Sometimes I lie down, others I just "bull" my way through it, forcing one leg in front of the other, sitting for a short time, then up again.
So glad your PMR isn't quite so debilitating as others experience it. Mine seems to be a lesser "dose" also. The pain was terrible until I got on prednisone and then it went right away.. I do experience aches and pains with each reduction but nothing unmanageable and it wasn't until I was down to 7 and below (now at 5mg from 15mg) that I felt the fatigue. I will be going into the kitchen (or wherever) and say. I have to lie down. and collapse on the couch or get into bed. I might not sleep. But I will be so tired. After a while I will get up and be fine again. It comes on so suddenly! I do think there is a mental or emotional aspect to it because I have never lain down in the market!! Anyway for me this PMR journey has been a big pain in the ass but nothing more. I am SO very very grateful to not be combining it with another major illness and to not have a more serious autoimmune disease. I am a lucky one. Plus I have altered my diet and am probably going to be better off than I would have been in the end!! I love those silver linings!
I have a PMR friend who said she would be in Next or M&S with her daughter and all she wanted to do was crawl under a carousel of clothes and sleep!! This particular brick wall has hit me while visiting friends, 2/3 of the way down a ski run and at home. And since I refuse to compromise - my experience of pain and stiffness with PMR and pred is zero. But the fatigue? It still appears very occasionally.
Great positivity yogabunnie !
It's always good to keep an eye out for those silver linings , even if they are often well hidden in the back of a drawer .
Don't forget though, just like OG , just because your experience of PMR might not be as severe as some of us doesn't mean that it is any less significant .
You have PMR , We have PMR , We all have PMR ..... Or GCA!
It effects us all equally , maybe not in the symptoms we have but in the way it changes our lives during the time with have it .
Everybodys experience of it is important , in fact experiences like yours and OGs are really useful to hear about for the many sufferers who , like you , have only one illness because it proves how well the medication and lifestyle tips you are given work when no other outside health complications are in the mix .
This gives new sufferers alot of hope at a very anxious time at the beginning of their PMR/GCA journey , so it's great to hear your points of view and perspectives voiced when a post is written.
Thanks for all of your input , and I hope things keep well for you , hugs , Bee x
My suspicion as well, based on some of the posts I’ve read, especially from those at lower doses.
I’ve not experienced much fatigue thus far. Sometimes I nap in the afternoon but this is usually from being up at night taking pred and using the bathroom multiple times after my dose.
The pain and stiffness was the worst, especially the 6 months at the beginning before I was diagnosed Should I ever get down to 5mg of pred, I suspect I’ll experience the dreaded fatigue.
PMRproAmbassador
"My guess is that fatigue is caused by adrenal suppression more than PMR"
Sorry - have to disagree, it is a common component of all forms of autoimmune illness, ask on any a/i forum and it doesn't matter what medication you are on, only pred suppresses adrenal function.
I agree that the fatigue at lower doses is probably due to poor adrenal function but above 10mg pred it is far less likely.
I too didn't suffer the crippling fatigue, just really debilitating pain and stiffness. In case it helps, I was diagnosed in November 2014, came off Pred in June 2016 (too soon - over optimistic), back on November 2016, off May 2017. I have now been off Prrd and symptom-free for nearly two years. There can be light at the end of the tunnel. Good luck with your journey.
Lovely to hear a success story it gives us all hope x
That was the idea!
I find that taking a CBD Capsule in the morning when I wake up helps enormously! My muscles actually work and I have much more energy! However I still get some bad days, just not so many! (I’m hovering round 10mg at the moment, anything less and my neck aches like fun!)
Oh , OG ,
the one thing I read in your quick question was the word "( apparently) mild PMR" , and my first thought was I wanted to give you a big hug because I felt like there was something behind those brackets , maybe it was just my mind overworking but have a big hug any way!
I read the question like either
A) you have read alot of other people's answers on here and because maybe you aren't having some of their symptoms but felt absolutely terrible along the way you were beating yourself up a bit for feeling so bad when you hadn't had the same and thinking
" I have nothing like that , I shouldn't complain".
or B) you asked a question at another point ( not necessarily here ) and someone made you feel bad for voicing that you were having a hard time , telling you your symptoms are mild.
OG if you have PMR you are a sufferer and deserve a hug and respect for coping with it !
It doesn't matter if you have all or just a few symptoms of PMR/ GCA , if they hit you mildly or severely each day , if your progress is smooth or like riding a monkey bike down a mountainside. PMR/ GCA sucks!
No matter how it hits you , if you have , or have had PMR , it's PMR , it gets in the way of your life , like getting chewing gum on your trousers , it doesn't matter how big your bit is or long it takes to get it out , if it happens to you it's the same as everyone else's chewing gum incident , it's always an experience that really sucks.
In answer to you actual question though , I think that there are Four Degrees of Tiredness , from Tiredness to Deathly Fatigue , they don't all involve sleep , in fact, it can involve no sleep at all!
1. Tiredness /
A balance of both physical and mental tiredness like that felt at the end of a day of alot of exertion , except it can happen all day as soon as you wake up. This tiredness may make you wish you could sleep but even if you go to lie down you can't get comfy or drop off . This tiredness can involve stiffness and some level of insomnia. You are not on your game , you may drop things , bump into things , be less coordinated or forget things and lose track of a conversation. It can be from the PMR/ GCA or Pred.
2. Extreme Tiredness / Like Tiredness 4+ .
You are extremely stiff , all movement feels uncomfortable but you can stay awake. You find great difficulty going to sleep because of discomfort , insomnia can go on for nights , you become desperate for rest.
When you do try to nap or sleep it has no quality it is restless and you feel unrested when you wake up.
Your body feels sluggish but you can still use it although it is very sensitive to do so . You are even more uncoordinated than when tired , all activity is slow and takes more thought, most jobs must be started again , you make more mistakes, accidents happen .
Your mental activities become slower and you lose track and become forgetful .
Your eyes begin to hurt , hearing becomes either dull or very sensitive , your sinus can get stuffy , you are more prone to headaches.
You begin to feel quite anxious , depressed , get easily upset , your pain threshold reduces despite your medication. Pain points become more sensitive.
Extreme Tiredness can come after a period of tiredness or over exertion / not listening to your body and can bring on a " Flare".
Fatigue /
This is a far more physical phenomena , even though it mentally affects you.
You body feels physically heavier , as though held back from doing anything , even though you want to move you can't .
It's not necessarily more painful when you do as your body says i.e. " keep still" but if you don't it can painful. All movement even going to the toilet takes great thought and effort . Movement feels like walking through cement carrying bags of rocks , like trying to get to the door in a dream that you can't reach.
You sleep in Fatigue , in fact you might find it hard to stop sleeping and after waking from three hours nap your just want to drop off again and can.
Fatigue can come in after a period of tiredness or as a swing after extreme Tiredness caused by over exertion. These swings can be a warning of a " Flare".
Extreme or Deathly Fatigue / Fatigue 5++.
When Fatigue has gone on for along time and has become out of control , or , Spontaneous Deathly Fatigue , caused by a flare in disease or medications .
You can hardly think through simple actions and give up trying to even try. You have to plan to go to the toilet because you know it will take so much energy to do it you will need to rest for an hour afterwards , you might even have to nap .
You have things to do but even the simple daily things like eating and drinking , taking medications etc. become hard tasks and you have to force yourself to do it or your will make yourself worse.
It is a mental battle to get past Fatigue rather than a physical one , although often trying to move with Fatigue also causes alot of stinging physical pain.
With Deathly Fatigue sleeping can become endless . You can sleep for twelve hours, wake up try to move then give up and sleep for twelve more. If you do not force yourself to do the basic functions , or the Fatigue does not pass naturally after a few days , endless sleep can make you physically ill because you stop taking care of yourself and your bodily functions are reduced . You become dehydrated , loose nutrients , become disorientated and can become delusional.
In extreme cases, that last for long periods , Deathly Fatigue can be like a physical disability. You can lose muscle strength and become so physically inactive that you get serious physical issues like blood clots , pressure sores and DVTs. You can end up needing walking aids , a wheelchair , or a carer or support to do normal functions.
Extreme Fatigue is a form of " Flare" , even though it does not always involve extra pain . It can be a dangerous symptom to deal with because an increase in medication will not necessarily help this sort of Flare alone , it needs physical management , which can be painful in itself.
I hope everybody is lucky enough to escape some if not all of them!
Take care OG and all , hugs Bee xxx
in reply to Blearyeyed
Thanks for that description. And agree re og
I’ll take the hugs, blearyeyes, thanks.
My question wasn’t really hiding anything, the “(apparently) mild” was because PMR has been mostly a minor bump on the road for me, was diagnosed swiftly and responded well to prednisone, with an apparently successful 11-month taper. No fatigue or tiredness issues for me, and once the pred was started, life returned to normal.
In the month or so after ending pred, however, aches and stiffness began to creep back in, with new aches in wrists and elbows. But I can live with this, before treatment I couldn’t dress myself or comb my hair.
So “apparently mild” may change to relapsing PMR. Or may not.
I was mainly curious about how debilitating - compared to the stiffness/pain - fatigue is for the unlucky ones who do experience it.
As debilitating but in a different way .
Like a paralysis of body and mind , as Rimmy says that out of body exhaustion felt with flu .
It can seem to come from no apparent cause because it is likely to occur because of chemical imbalance in the body rather than environmental causes or physical activity causes like pain or tiredness usually begins.
The pain usually comes when you try to fight it , and the mental effects are different.
Again like the flu , as though you head is stuffed up with glue , it feels like the "mental you" is standing down the end of a very long tunnel trying to shout to the "physical you" that it must do something , and neither is really interested in participating.
Then your mental self gets tired of the shouting , your brain cannot cope with the energy it must muster to get anything to work and a huge sense of mental exhaustion and apathy takes over.
You find yourself feeling so physically weighed down that you look at an empty glass and want a drink of water but know how hard it will be to create the energy to move and get one that your mind tells you if you just sleep you won't know you are thirsty.
Usually , just like flu , this bodily shut down is temporary , but if not , it takes a great amount of behavioural training to force yourself back into activity and its like trying to escape quite painfully from a very deep stupour.
And just like with the flu , sometimes you can't do it on your own and at first you have to be prompted , helped or supported by someone else to start getting going again . Chronic Severe Fatigue can be very slow to recover from.
I hope you don't relapse , getting the balance between rest and activity while you body is still repairing and rebooting up to full power helps I think.
Have you tried other pain medication for your wrist stiffness ?
Boosting your Vitamin B 12, E, D , K , potassium , zinc , selenium and Omega 3 intake can help boost your body repair and reduce pain in those areas .
But if it is having an impact it could be from some damage left over ( muscle , nerve , joint etc.) from PMR and how you used your body to try to reduce impact on the areas that got PMR pain.
It is probably worth having it looked at if you haven't already , just to make sure there is no damage , and using a painkiller or anti-inflammatory gel on it in the mornings .
Take care , Bee x
Bee, I WAS using an anti inflammatory (Aleve= naproxen) before PMR, and ibuprofen after prednisone once pains and stiffness recurred, but upcoming oral surgery made me get off them due to blood-thinning effects.
Now that the offending tooth is gone, I guess I should try NSAIDs or acetaminophen and see if remaining stiffness retreats.
(I do still have 14 1mg tabs of prednisone left, too, and could see if it affects my condition.)
If it's wrists and elbows I would definitely have it checked for other non PMR related causes first before hitting the Pred if you are Pred free.
No point in starting the steroid again if the nature of the pain isn't caused by something which isn't treated with steroids .
If you can try NSAIDs , and it doesn't contradict with any other medication you are on at present , it may be better to try that first , especially if that is what you had previously been recommended to do by your GP.
If it turns out to be carpal tunnel , OA, or other joint related damage , like you considered above , other treatment could be available that will give lasting relief without the need for a return to steroid drug use.
I'd definitely get to the GP and ask for some X-rays and have bloods done .
Remember carpal tunnel can be related to PMR ...
Yes, that's why it's seemed worth a GP check to me before trying out any form of drugs for the stiffness and pain.
If it's PMR related a few 1mg over a few weeks probably won't be enough to sort it long term .
If it's not PMR , anti-inflammatory drugs or gels will help in the meantime, as well , if not more than low dose steroids until the GP sorts out appropriate treatment without putting the body under the added confusion of having steroids reintroduced back into the system when it is just rebalancing after becoming steroid free .
I do have the option of asking for referral to a rheumatologist. Might be time to do that.
Hi Ourdoorsygal
Deathly fatigue can strike at any time. I sing with a women’s acapella group and a few weeks ago we had a gig at a local small theatre. I was really looking forward to it because it was something different to what we’d normally do. I was fine all day, had my clothes ready and had showered and was going to dry my hair after dinner. Suddenly the energy had gone. I could not lift my arms, let alone dry my hair. I had to message someone to let them know, very last minute that I was I able to go. The next day I was very tired but the real fatigue had gone. Sooooo annoying!!
I have the same aching and stiffness along with severe fatigue. Rheumatologist gave me anti inflammatory (cyclobenzaprine 2 x a day) and it really did help with the aching and stiffness but the severe fatigue is still very much there. Rheumatologist said there is no drug for fatigue that I should workout and go for walks. Very frustrating because if I had enough energy to workout and go for walks there wouldn't be any problems. I have always been an active person and the fatigue brings me to a complete halt and makes me feel so lazy. I do the basic household things in short increments then go rest for an hour or two and then try to do something else. Some days the fatigue makes my muscles so weak I don't get off the couch. I was diagnoised June 2018 and have tapered off pred to 7 mg and seem to be stuck at 7mg. It took me two years of seeing different GPs that ran every test they could think of and not finding anything wrong, making me feel like I was crazy. I was eventually referred to a Rheumatologist that told me I had Lupus. I keep seeing this Rheumatologist for 14 months but he wasn't listening to me when I told him I still was having the muscle aching and fatigue. I when to a different Rheumatologist who diagnoised me with PMR 10 months ago. The first 5-6 months on pred was heavenly but I am finally down to a dose that is quite trying, been stuck at 7mg for the last 3 months. So if I count all the wasted time with doctors I hopefully don't have much longer to deal with PMR before it goes into remission. I can always hope!
Workout and go for walks???? Obviously S/HE doesn't have PMR!!
Pacing;
healthunlocked.com/pmrgcauk......
And if the symptoms are back - you have gone too low. Doesn't mean you won't get lower, just not yet. How you felt at the starting dose is your guide - you should never feel worse at the end of a reduction than you did at the start. Back up a mg, even only 1/2mg and you may feel a different person. And 1mg here or there isn't the end of the world in the great scheme of things.
If I back up to say 8 mg how long would I stay at 8 mg before decreasing to 7 1/2?
Until you feel good - at least a week or so and preferably a month I'd say. These are what are called physiological doses - the same sort of amount your body makes naturally when not on pred in order to function. They are not dangerous.
Thank you for your suggestion. I have read other replies saying the same thing on this site and in books I just wasn't brave enough to try it. Today I did up my dose to 8 mg and I am off the couch and moving around!
First of all it's impt to know whether your PMR is active.... My doc follows my PMR Activity through my sed rate...If your sed rate is normal U might pursue other causes for fatigue.
That isn't reliable. Some people never have raised sed rates - at least, not raised to above the rather unreliable "normal range". Others may have had raised levels at diagnosis but the levels do not rise while they are taking steroids at any dose. Or they may lag behind - one study found that that could be as much as 6 months behind.
There are a lot of replies to your question so there is not anything else for me to say except that l never get a good nights sleep,and this leaves me with DF,and a lack of motivation.l find it hard to make an effort sometimes to tackle tasks that need doing,or to take part in social activities.l do find though that having made an effort to go out and meet up with friends ,it does make me feel a lot more positive ,and a sunny day can work wonders and spur me on to spend some time working on the garden,which is always very therapeutic.l just have to make sure to pace myself and not over do things out there .
Hi, I have had PMR for 2 1/2 years now and my worst symptom has been fatigue. I am not talking about tiredness, but debilitating fatigue, not being able to get off the couch or chair without help, not wanting to bother with bathing, dressing, washing hair because just did not have the energy. And all the time wanting to be up doing all the things that I knew needed to be done. And even know it is my worst symptom, but know I question how much is PMR and how much is a side effect of the prednisone. My mornings are usually good. I sleep about2 hours every afternoon, and my energy leval is low in late afternoon and evening. I have to use a lot of energy consevation. For me it is much more troubling and disabling than the stiffness or pain. You are fortunate to not have experienced it and hopefully you will never have to.
Thanks for all the replies. This group is very helpful.
Helped me a lot and I'm new to all this
Ah yes , that old Spontaneous Drug Induced Debilitating Fatigue , only goes after the drug leaves your system or you body builds up enough tolerance to the adjusted reduced dose that the Fatigue and numbness goes but the Pain comes back!
Otherwise known by Drug Companies as, " May cause Drowsiness " !!!
Drowsiness is one thing - the concrete legs that came with methotrexate was something else!
Yep , not from methotrexate , but I have experienced those concrete legs and arms , like someone had come in from nowhere while you weren't looking and poured cement down your throat until your body was full and set stiff because of a drug change.
And that feeling that you are trying to get through lead curtains to get your brain to work and tell your body what to do.
Finally , all you can do is sleep .
It's suprising what the label , " May cause drowsiness" actually means and that drug induced Fatigue comes in so quickly .
I am not suprised they tell you not to drive or use machinery . They aren't just saying it to be cautious to cover the backsides. You really should take it easy for the first few days on a new medication in case that happens , as it hits like a train from nowhere , and if you were in a car could be very dangerous indeed.
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