So hard for anyone to answer this I know, but fatigue is really getting to me. I just boiled an egg for lunch and I have to say I feel so weak, I struggled to peel it 😳I did it somehow, but my hands, fingers, arms have next to no strength.
I had planned to make a dhal for my daughter who has stomach problems, but it will be difficult. I’d go to bed/sit down and rest, but the trouble is I rarely feel any better for doing so. Am just permanently exhausted, on 8mg.
Will try to discuss with GP next week, but what do you think, can this really just be adrenals struggling??
Thank you for any comments xx
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Nextoneplease
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Yes, have had a lot of stress re friend passing away, daughters illness etc. Felt even worse on 7.5mg, when pain joined the party too, so have already gone up 0.5mg…..Fearing that if I take an extra 1mg now (early afternoon), my sleep may be affected….and also I’m really trying to stick to the plan. Really don’t like going up and down….but today I think I may have no choice. It’s either take an extra 1mg or collapse into bed….
Of course you need to see a GP but not being in bed before midnight plus everything else, plus being on 8mg, I’m not surprised. The fatigue can be all consuming. If a couple of mg makes you feel better it’s more evidence that it’s adrenals. This level of dosing for me was the worst of both worlds. Too high to wake the adrenals but too low to cover my body for its needs in daily life. The only way is to reduce through it until the adrenals get the message but I’m not sure you are in the place to do this at the moment unless you can rest.
Thank you Snazzy, I think you’re right…..it’s not a good time for me to rest, but then when is…..? Guess I have to plough on as best I can but yes, will discuss with GP (I have a telephone appointment to discuss steroids for tooth extractions but will add this on if she’ll let me). Thanks again xx
I have switched the time of my dose to 2:15 AM, 50 mg. I usually go to bed around 10PM ish. This helped immensely and I actually slept through the weakness, shakes, fatigue were not debilitating at all. No ravenous hunger either. Always worth a try.
Thank you Missus 😊Actually I’ve never tried a night time dose, I wonder whether it usually helps with weakness and shakes? I couldn’t stand at choir today…..😟x
Third night taking Pred at 2:00AM. Not going as well as anticipated. Perhaps the high dose (50 mg), plus this is supposed to be a "tapering week", but it seems to making my stomach ache, even though I do eat quite a bit with it. Perhaps it's remaining in the stomach too long? This morning shaky, sweaty and general weakness, not fatigue though; also a bit brain foggy.It's now 9:30 AM. Will continue for a for few more nights to keep you posted.
yes I have found split dose Easier ,used to tack first dose of 5 at around 5 am. But this had me waking up earlier 😕 so in my wisdom decided to take it at 11.0 pm as it does not bother me sleeping ,then second dose 2.5 with breakfast. But as so often being said on hear no key fits all locks and by heck those are very wise words
but I just can’t get my head round how we can feel so different every day ,good day bad day a lot of the time 🤷🏽♂️until I finally got that into my thick scull I would think wow I’ve turned a corner so so disappointing 😕
And doctors I am losing faith they all tell me differently 😨
Think I get best advice on here. People say o you shouldn’t go on internet
How little they know.. personally I think all rummy’s should have had pmr to qualify 🤣🤣🤣 then they might understand it much more . But it is an absolute mine field isn’t it annoying when people say how well you look as if you was an hypo 😱 must stop I could go on forever
What often happens is that you have a good day and do too much - so the next day you feel not so good and do a lot less - the rest does you good and you feek=l better, Rinse and repeat!!!!!
Interesting idea. Never occurred to me to split the dose. Are you completely free of side effects such as headaches and lack of concentration or are they just reduced. Let me know pleas as would like to give it a try.
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I know where you are coming from - fed up of being knackered! It is even a struggle to get out of bed in the morning. As for cooking - at least it is just me to be fed.
But yes - it really could just be the adrenals given all that has happened recently.
Thank you, that’s generally how I boil eggs - but I had forgotten about the rolling over the countertop thing, and the little pocket of air! You’re a mine of information PMRpro 👏
And yes, I am fed up of being knackered! And struggle to get out of bed….
I love rice pudding (in trays, not the individual ones) but oh the flipping packaging. The adhesive gluing the top cellophane to the tray is stronger than the cellophane itself, so it won't peel after heating, just the edges come off, so it has to be cut, risking 3rd degree burns to my already painful hands. All manufacturers are the same.
Me too - well for a couple of days a week anyway. The other days I have something really simple like a baked salmon fillet and vegetables, or hubby makes us an omelette. Long gone are the days of entertaining……a dinner party, what’s that??!
If you are in the adrenal waking up phase, in my case it was unbelievable how the deathly fatigue can hit one. Making a cup of tea exhausted me. In fact lifting up my arm to change the TV channel was an effort!
Here is another member for the zombie clan. I am too tired to think and can't even remember mobile number. This is going from 4mgs to 3.5. Do I wait for some energy return before trying 3mgs and is the same going to happen again on each reduction? Trying reflexology tomorrow, used a day's energy in making appointment, even thinking about it was exhausting. Spring is just around the corner ......
Hope the reflexology helps - and I so identify with using up a days energy just making the appointment!! The spoon theory is great but what if you only have one or two spoons?!? 🤦♀️x
I'm having a "fatigue day" today too (on 6.5 mg of Pred for the last few days). I'm reluctant to up my dose because I'm hoping this is adrenals trying to rev up and think it's just a stage I have to battle through. I was planning to do some sewing, but getting down on hands and knees to cut out material is more than I can deal with today! So a good Kate Atkinson book on the couch with Millie the cat on my knees is the new plan!
Me too! A couple of days of emotional stress this week, unrefreshing sleep plus the snow and I’m completely devoid of energy. It’s the inability to cope with the slightest amount of stress I struggle with as I think I am following my body’s needs and pacing well. Confusing, really does your head in …
You description is exactly how I feel! I can't deal with any type of stress now at all - and it's not really stress as I once knew it. I used to thrive on stress and just work harder and harder. My life and expectations of myself are now completely different.
yep, Bluey, I am so anxious about everything. Tomorrow I have a nurse’s appointment. Even worrying for the last three days. Will the car start? Of course it will. Will I be able to park? Of course I will. Will I manage to get out of the car safely? and so on. Ridiculous, isn’t it. I am down to 2mg yet the anxiety remains.
Sorry to hear you’re a sufferer, on such a low dose too. Knowing I’m not alone helps. It’s another thing I’m having to tell friends to explain my illness. I was let down by someone last week re arrangements (nothing major) but it completely set off an emotional stress reaction. That, combined with having to deal with a difficult dr’s receptionist the following day sent out the keep awake demons and total fatigue over the weekend. It’s like I can’t always control my emotional responses to situations that would never have bothered me in an old life. Much better today though so it’s stay calm and enjoy the ‘ups’.
Oh Next One Please you are not alone! I think, for me, the constant fatigue is the most unbearbale part of this condition. All we can do is do what we can do, rest when we need to and hope things will improve.
Me too, I have no advice but every sympathy... and although I wouldn't wish this on anyone, it is reassuring to know others found the same. I also find my brain switches off, I don't know if this is what people call brain fog, for me it's like all alertness, all intention is just switched off. I have zero interest in anything, as well as zero energy. Then weirdly, every night about 6.30 for some reason I come alive as a person again, have a burst of engagement and energy. It lasts a couple of hours.
Like you I am pushing through hoping to reawaken my adrenals, but it's a long hard slog and feels impossible at times. Thank heavens for this group.
This has happened to me, too, and I didn't understand until I just read this thread. So if I cut down on pred too much, it isn't the Pmr that is hurting me but the adrenals kicking in too slow? I've been cutting down by one from 12 the last few months and each time I had a bit of pain, but then I got better. I felt like I was really over PMR. So then a few days ago I went down two preds to 8 mgs and this week has been so hard, painful, and tiring like you all feel. I feel like going up to ten again, it's that bad. But if I fought on, would I get used to it and be better again?
Why did you go from coming down 1mg at a time to 2mg? The lower the slower and below 10mg NEVER more than 1mg at a time. Even 1mg at a time is too much for many. Any drop should be no more than 10% of the surrent dose and that is 1mg at 10mg daily dose. As you get lower - the step needs to be smaller.
great answer . You are correct. From 12 mg. Down I think 1 mg. every two months is best .. I haven’t been able to go to 10 mg and hold yet as I keep flaring. Two weeks ago I began 5 mg. Every 8 hours as I’ve read that the side effects are null at this treatment level .. I’m currently feeling better than I have since diagnosed with pmr 18 months ago. I will no longer dose once a day ever
o bless you,I m going through the same as you,I ve been under a lot of stress with loosing my job in January,doctors don’t want to know because they don’t know about us and having PMR,I m on 7 mg of pred but it’s too low and I hurt,I m afraid of going higher as I have every side effect going,so I m not sure who to turn too.
Wishing you all the best and I hope you start to feel better soon
Sorry to hear about your job loss CL, such a stress adds to your difficulties. As I taper lower I’m in fear of a flare as, like you, I seem to suffer from many side effects from pred too. I hope your pain eases soon. Sending a virtual hug 🫂
I’m so sorry you’re having such a difficult time. Losing your job is the pits, as are pred/PMR side effects. Is your GP on board with your taper? I can understand you don’t want side effects, but being in pain isn’t good….
Thank you for your message,I just don’t see the person I used to be in the mirror anymore,I just wish it would go away like we all do!I haven’t seen my doctor this year they don’t seem interested I m just left to get on with it,I think it’s time I start to knock on their door tomorrow.
I do know what you mean about not recognising the person in the mirror 😟 sometimes physically, sometimes the personality, if you see what I mean. I do think you should see your doctor, and if your current GP isn’t interested, I hope you can find a better one. No one should be left in pain. Take care of yourself and please keep in touch. Hugs 🤗🤗 xx
Ask PMPro or Dorsetlady for links to the appropriate adrenal articles, I am struggling with getting things right for myself and wouldn't want to advise others, but in my case it's a definite possibility xxx
Spot on! I can't believe how overwhelmed I am with fatigue this morning...and muscle weakness...can barely lift the kettle to make my coffee, I live alone and could easily give up eating today. I can't completely collapse because I can't let work know the state I am in...I could easily lose my job (I am freelance) fortunately all online...but I am beyond exhaustion...it will get better...now going to sleep (no choice). It will be better...seems to come in waves...stress is the main culprit... terrible stress in my life at the moment...
‘Beyond exhaustion’ describes it perfectly! Do look after yourself as best you can. I know I’d be hopeless left to my own devices….sending you hugs 🤗 Hang in there xx
Make sure your blood sugar is not too. Low blood sugar goes along with low cortisol and can make you feel absolutely awful. This means we lower simple carbohydrates but higher amounts of fats and proteins. This is what my endocrinologist told me about the hypoglycemia. And I indeed do have it because I test my sugar and I see it.
You know, Karenjaninaz, I do feel exactly as if I have low blood sugar. I didn’t really think of it as I’ve been concentrating on it not getting high 🤦♀️ I guess a blood test is the way to go? Xj
The time to test is when you feel that way. There is a problem with taking a load of sweets to feel better when, in 2 hours, crash again. This is reactive hypoglycemia. The pancreas overshoots the insulin, in response to the sugar, then blood sugar plummets. What helps are more frequent meals/ or snacks of higher protein, healthy fats and minimal carbs/sugar.
My endo said, if I feel dreadful, shaky and sweaty take a small amt. juice in water followed by a protein like an egg, nuts, cheese , meat. If that works you have a clue. Hypoglycemia frequently accompanies adrenal insufficiency according to my rheumy.
“Hypoglycaemia frequently accompanies adrenal insufficiency according to my rheumy.” Interesting - I wonder why it should be?
Anyway, I don’t eat many sweet things (just the occasional plain biscuit with a cup of tea, that sort of thing) and I do eat plenty of eggs, cheese and nuts (not much meat). However, there’s always room for improvement and if steadying my sugar levels helps this awful fatigue, I’m all for it. So will try to eat even more sensibly than I already do, if possible. Thanks for the idea, always worth a try 😊xx
I agree with all the comments but you are explaining exactly how I felt for months with adrenal insufficiency. I thought I was nearing death but I hung on. Saw endocrinologist and the whole thing.
Didn't think I would make it south but I'm south and their kicking in slowly.
Hi VeneziaI'm in Canada and normal cortisol levels are aprox 125-310, I was at 20.
He was really never concerned vs my rhumitologist the only thing he said was if it continued a few more months he wanted me to take 2.5mg of prednisone.
So I suffered and continued testing my levels and it inched back to low normal. He wants to see me again in 6 months to see where my levels are and how I'm doing.
I was on prednisone for 7.5 yrs always using the dead slow method and constantly would stabilize for 2 mos or more before another taper. I had problems at 25mg going to 20mg so my rhumitologist had me tappering only 1mg at a time. I was that sensitive.
Anyway I'm at zero and being very cautious about stress and over activity for a bit however we're away south and I'm still able to dive but nor daily.
Thanks for your reply. Like you I was on prednisolone for apprix 8 years which caused my adrenals to fail completely. My rheumatologist transferred me to Endocrinology where I was put on hydrocortisone - it is proving inadequate and he now suggests I go back on prednisolone - I am speechless!!
Yes, I did a synacthen test - at my request because I was so exhausted...that was what showed I had no adrenal function. So yours picked up after 2 years?
I was in adrenal insufficiency for 1 year but the last 2 mos the worst then all of a sudden it started to get better.I truly hope yours start to kick in.
No, as I said, when I saw the endocrinologist he put me on hydrocortisone - that was about 2 years ago. But as it is proving inadequate ge suggests I go back to prednisolone, which is what caused the problem in the first place!!
It may be ironic -but the difference now is the dose of Pred -a small maintenance dose to replace your normal cortisol production is no different to a diabetic being on insulin…and if it saves your life ….
Many people are on small dose of some drug or other for life …better than the alternative … 😊
Hi DL - yes, I suppose if it works....unfortunately this has all dragged on so long that I have lost considerable muscle mass through not being able to walk or exercise much, which is also related to the fact that I have an iliac artery blockage which causes me great pain when I walk...ni stent becayse of all the other things wrong!I confess to feeling depressed.
I'm not surprised, having one illness is bad enough, but add in other issues and it can become very depressing.. but as the saying goes " we have to keep bu&&ering on" - difficult though it may be.🌸
My Endicronologist told me if I continued after a period of time, to go back on prednisone at a dose of 2.5mg. If it's not working you know prednisone works.
Yes, a bit better thanks Bluey 😊 Went to a choir rehearsal- had to sit down for most of it, someone brought me a cup of tea etc, so I obviously don’t seem great - but I went! 🎉Take care xx
thank you everyone for your posts re fatigue and brain fog and pain. I was taken off Pred in January and am really suffering withdrawal. I’ve also got Carpal tunnel syndrome and arthritis in both hands plus recovering from a shoulder replacement . I have an appt with Rheumatologist next month and as I really have a problem getting her to understand how I feel my son-in-law (who is a medic) is coming with me. I also have great trouble with undoing packaging etc. I am now 80 yrs old and with everything I have described my lifestyle has really changed from being an active person to an inactive one depending on my husband a lot.
I forgot to mention I am trying being back on 1mg Pred for one week. I also take 20 MGM’s Metotrexate a week which rheumatologist is threatening to lower to 15 mgs next time I see her. Have been on this as well as Pred for about 7 or 8 yrs for PMR and GCA. I am very scared that I will have a flare of GCA again which happened in 2019 .
That’s a lot you have to cope with there Judywalks! Is the 1mg pred helping at all? So glad your son in law is able to go with you to your appointment.
And yes, I’ve been quite taken aback by the number of people posting about quite similar problems. Take care of yourself and let us know how you get on? Hugs xx
Yes. In my experiences(s) is can be an incapacitating exhaustion like nothing else. Seems crazy however to be that way and explain it to my pcp he would chalk it upto steep apnea to which I faithfully be use my CPAP .. would alter diet as if it were pernicious enemies ( no help) etc. Pcp, respiratory MD and rheumatologist would enter my report of it in notes and give me the "shrugg shoulders" and move on...no help from them. My wife was concerned because she witness it in horror...This forum was/ is the only place where I gained some context, insight, support and that it was "real". .. Sad but true. So beyond adrenal education it is for real and like nothing else I have experienced including post op anemia, mononucleosis or deconditioning. The PMR fatigue/ exhustion has its own place in my life experiences... so answer here, just caring affirmation ... yup, me too. Like nothing else. Listen to your body and pursue your health etc... Hang in there
So sorry to hear of your troubles. I am on 1.5 mg.of pred but also feeling exhausted - and just about to go on a 4 hour journey to a friend's funeral. I thought I would be leaping all over the place at this stage, but I am not; could the time of year have anything to do with it??
In Germany they talk about "spring tiredness" - it is the body readjusting to the change in day length amongst other things. But at these low doses - no, the adrenals have to start working. Many people are disappointed to discover they feel worse at low pred!
I had a big spell of tiredness when I was coming down to about 8mg. Quite a lot better now although every so often I have to remember to rest! It does seem to come and go - wishing you well.
Yes I am on various other meds, the most likely one to be involved is Lisinopril for high blood pressure. That’s was raised from 7.5mg to 10 mg a couple of months ago. May not be helping exhaustion, but then I don’t want high blood pressure either…
I weaned off Preds in December after 3 years of PMR. I got down to 2mg and felt ok. But without any Prednisolone I have constant back/neck/hip/shoulder pain. Fatigue. Fighting it. But after reading Pred at 5mg constantly is not harmful, I am determined to get back on it. I read Methotrexate is an alternative but don't know much about it. My conclusion. Stay on the lowest dose of Prednisolone you are happy on. Don't quit it.
I felt very similar to your symptoms. Had adrenals checked, was'nt them. But when bloods came back my vitamin D was very low i.e., 11 endocrinologist said it should not be below 75 so he put me on a high dose of vitamin D for a month and the transformation was astounding back to my old self (well nearly, given the problems I have with pred). Could be yours is low worth getting checked.
Glad vitamin D helped you. As it happens, years ago, well before pred/PMR , I was found to have similar Vit D levels (13 in m6 case). I have never seen the GP jump so quickly! Like you I was put on a high dose and have been on a maintenance dose of 1000iu throughout PMR. My levels are now 130+ So it’s not Vitamin D deficiency- thanks for the idea though 😊xx
with you on this one. Difficult for anyone who has not experienced it to understand how profound the fatigue is. I often have periods I’m so zombified that I can’t even read these posts and am absent even though I know hearing other folks are similar helps so much.
On the positive side, after so much exhaustion, nausea, crying, bowel issues, insomnia, depression and grumpiness- even to the point of lying in bed and wondering how much assisted suicide cost, a break through today. I had a full nights sleep. It was a wonderful restful sleep and I feel fabulous today. I feel cheerful and laughing. At things. Yes I’m still stiff and muscles weak but I feel great and when you’ve been feeling so bad for a while having these moments gives hope. 😁
Now I need to make sure I don’t try to do too much today. Now there is the issue.
Might be just me, but in my personal experience fatigue indicates a flare or that my steroids are too low for whatever reason. Often a temporary increase in steroids eg to go on holiday or when I'm wiped out after a holiday sorts it out. Adrenal problems can happen any time but for me it was only when I tried to go below 5mg Pred
Interestingly I had a telephone consultation with my GP yesterday and I mentioned the fatigue and that I’d gone up 0.5mg. To my amazement she recommended I stay at the higher dose (8mg) for at least another month….and she didn’t mention adrenals…..so I assume she thought I was in danger of flaring. I didn’t press it as I had a shopping list of other things to ask 😳
So thanks, you’ve reinforced the idea that I’ll stay at 8mg for a few weeks at least. All the best to you, Nextoneplease xx
hi,next one please. I haven’t posted for long time but reading your post made me realise I am having similar feelings. I’m sooo tired for most of the day and can’t gather any energy To do the simplest jobs.I have been on 5mg for the last few years with several flare ups.I have requested an appointment with rheumatologist with whom I have had no contact for3 years as Inwas referred back to my GP for ongoing care which unfortunately has not happened due to many different doctors at my practice who don’t seem to understand PMR. I’m 83 and am carer for my husband who has Alzheimer’s . The pain I have is in my knees which restricts my walking,my PMR is from my waist down so am waiting for. X-rays to see if it’s to do with PMR or chronic arthritis I don’t understand adrenal gland because it has never been explained,I have been on prednisolone for 12 years having managed to come off it Sept 2020 but ended up hospitalised a week later so put back on it straight away. I seem to sleep well but am very tired during the day and my muscles ache from waist down most of the time. I wish you every success with your GP and hope all will be well 🙂big hug.
It might be worth asking for your cortisol levels to be checked by your GP -it sounds as if you hospitalised because of low adrenal activity- and if that’s the case you really should be under an endocrinologist’s care -
I’m sorry to hear you’re having such a tough time - and it’s doubly hard, I know, to look after your own health needs when you’re a carer.
I agree with DorsetLady’s post, I do feel you need some medical attention. Why were you hospitalised? Was it pain or more general unwellness? If the latter, it may well have been adrenal problems and as DorsetLady says, ideally you’d have both a GP fighting your corner, and specialist care from a rheumatologist or endocrinologist.
Just a further thought….do you have any help with your husband’s care? I do hope so, because this would give you the opportunity both to get some rest and also to think through your own issues.
Please do keep posting (if you want) and let us know how you get on. Sending you very best wishes and hugs 🤗 Nextoneplease xx
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