today is the first day of taking 5 mg less Prednisone, from 45 mg to 40 mg.
I experienced a body sensation today that was so strong I could not do anything but lay down and wait it out. It started around 10.30am and lasted till 4 pm. I feel better now.
I like to describe how it felt for me and I would like you to tell me if it was fatique or something else:
My while body feels like a wire that is vibrating in a very high frequency and makes me feel shaky and unstable. Especially the larger muscles on my legs and arms. I also feel abolsutely no energy in my mucsles, like when I go upstairs I almost have to drag me up holding on the the handrail.
How do you experience fatique? And was it fatique?
Thank you, Monika
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Akino
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My experience with fatigue is being almost non-functional. So tired that I don't want to get out of my recliner. It is a deep, intense feeling of fatigue that I cannot fight. It happens whenever I wean down on the prednisone. Today I weaned down only one mg and I took 2 naps. Never in my life have I ever napped during the day until I was diagnosed with PMR in Dec. 2016. I should be okay tomorrow however. That seems to be how the fatigue affects me.
With steroids one must watch their blood sugar levels. My doctor put me on Metformin just in case as I am not diabetic, but my A1C was a little higher than normal and being that I have to be on prednisone for almost a year, she wanted me to be protected. 2 pieces of chocolate cake? Lol
Thank you for your comment. I wasn't aware of this problem. It seems the sensation I feel is different to what you're experiencing. Maybe it's not fatique but something else. I have this 'singing', 'buzzing' sensation quite often without the urge to lay down.
Yes - what I described was my fatigue, but the buzzing sensation you are referring to could be sugar levels changing. Not sure as I am not a doctor, but just something to follow up with. It wouldn't hurt. You are on a higher dose than I am and my levels are being affected a little.
I get that 'singing' 'buzzing' sensation and ringing in the ears whenever I am overtired or stressed. For me it is all part and parcel of the PMR package..
If your Hba1c was only slightly elevated I don't understand why your doctor put you straight onto metformin - that is just adding another layer of side effects. I wouldn't accept that so easily! Diet should have been the first approach.
She doesn't have much idea though if you are on pred for PMR! PMR usually lasts far longer than a year I'm afraid!
I was on it previously for many years. I lost almost 30 lbs before I was diagnosed with PMR and my A1C was very good. Once I started the prednisone, I went for blood work and my A1C was in questionable range again, so she put me back on Metformin. I am more comfortable being on it too. TY
Hba1c is a form of haemoglobin (the stuff that makes red blood cells red and carries oxygen) that is changed by the level of glucose in the blood. If you have a high blood sugar a lot - the Hba1c is higher. It reflects the average sort of levels over the previous 3 months.
Poor you , it sounds like fatigue . But also I think our expectations of what might happen to us when we read what happens to others , sometimes , can add to our response .
It has taken me 2.5 years to drop from 15mg to 4mg . Each step is individual , and I usually take to or three days to settle at the next level and then stay at that dose for a month . I believe when you have to take such high doses you can drop quicker at first .
However it all is a bit of a waiting game and to try to relax and not worry what will happen next , for me , is the only way to go forward . My pain is in neck head shoulders which returns with avengance after each drop in dose of pred . My biggest problem is not to panic and up the dose . Yo yo-ing is no good for reduction , as I have found out .
Allow your self time for each reduction and do it when there is no up and coming engagement during the first few days of that reduced dose .
Good luck . You will get there in the end . We are all on this unexpected journey together, but individually,and fingers crossed your body will soon be use to this next dose .
Also I have found it better to read , listen to music , relaxing sounds helps a lot .💐
Hello Monika - I am 64 with GCA, Polymyalgia Rheumatica and have partial blindness in one eye. I started on 60 mg prednisone and two years later have weaned myself down to 11mg. I experience on a daily basis something similar to what you describe. "Tired" just cannot describe it - it is 'extreme' . I can get out of bed at 8.00am and be back on my bed at 10.30am for up to 2 and a half hours. Very frustrating to say the least.
Next week I am going to discuss with my rheumatologist. On this forum I have learned about 'adrenal fatigue' which sounds a likely diagnosis.
I also feel very weak, don't feel safe to drive.
I also look fwd to any suggestions which might help.
That does sound like the weird fatigue attacks that I also experience. Resting on a sofa is not enough, I need to head to the bedroom and lie in the dark. I have also noticed A kind of buzzing/ fizzing sensation in my ears as if I can hear the blood rushing. I have had PMR diagnosed since March 2016 and have reduced Pred. from 20 mgs to 10mgs struggling to get to 9 mgs a shower exhausts me and I often have to sleep before I am properly dry.
I was like this when on o ver 20 but now on 15 only someday I get this feeling.the doc havee me antihistamine which helped a lot with the shaky feeling
That is definitely fatigue. I have it every day when I take over 30mg of pred and sometimes when I am reducing. It is an overwhelming need to sleep and it can happen anywhere. I have fallen asleep waiting in the dentist and especially art galleries and museums. Mostly I know when to expect it and don't go anywhere but give in to at least an hour snoozing a day. If I go away I usually timetable in a sleep every day in order to enjoy the rest of the day. With it comes acute muscle ache and brain fog and yes I use lifts if available. It is all part of managing the illness and coping with flare ups which seems to happen to me regularly. Some people do not have this problem and their bodies accept the pred better. Its wise to remember that both the illness and the steroids cause it so self medication can be tricky. I am desperately waiting for my next hospital appointment as my GP says my current symptoms of sore scalp and tingling are not the GCA but something else which I do not believe. Thus the high dose. Good luck. Remember some people would love to nap in the daytime!!
As others have said 'fatigue' hits everyone differently. I started on 40 mg almost 3 years ago. Now down to 11 mg with a couple of flares in between. I have never had any trembling sensations and no fatigue at the higher doses. However, fatigue has been off and on with me for some time now. I 'think' it's at it's worst when I'm in the early stages of a taper (using the DSNS taper). And it can very from low energy days to debilitating fatigue. Sometimes I feel the need to nap, but rarely for more than 30 minutes to an hour. Sometimes in the morning, but more often mid-afternoon. For me, fatigue as a feeling of exhaustion. Sometime in mind and body, but mostly body. No matter how motivated I feel the fatigue limits what I can do.
It makes me feel sick. I've experienced it for the last couple of days..I think it's gone?? Basically, tapered my steroids very slowly at the end of last year and all ok...off them now. But have had a chest infection recently and doc put me on 30 pred for 5 days...after stopping then on Saturday I've been shattered. I could honestly lie on the floor and sleep any time. When I wake up from 10hrs sleep at night, I still feel exhausted. Sick, tired and completely unable to help my teenagers who want my help to revise. Poor you...nobody who doesn't know what it's like could explain. I often think that my husband just thinks I am lazy, rather than bone tired. Get better! X
your situation spoke to me. My husband and I have no children and we're retired. In all this new life what struck me the most is that some of you are in a situation to justify themselves. To be surrounded by doubt must be terrible. There was one post from one of us who wanted help with words to explain to her family how she felt. This is a topic we should help each other with. Thank you for bringing it up. I'm puffyface nr. two by the way.
Hi Monika, thanks for your thought provoking post.
Well, where to start?!
First, many here report massive fatigue both with PMR and the steroids that are intended to manage the symptoms of pain and stiffness. My best analogy is that, with PMR, the body's energy battery is only 50% full at best (compared to previously) - and it is very easy to deplete it further through even 'normal' activities, let alone additional physical and mental strain or other factors like viruses, comorbidities etc, or even the cold winter weather.
My best description of my own experience of this fatigue is 'Deathly' - an unnatural tiredness and weakness / shakiness which affects you cognitively as much as physically. So much so, that even holding a social conversation or concentrating on something for a short period can leave you feeling 'wiped out', and no amount of sleep or rest seems to make a difference.
The dreaded Brain Fog is also something that's often mentioned here - an inability to concentrate, memory loss and resulting irritability / feeling emotionally stressed ('frazzled'!) seem to be part and parcel of both the PMR and the effect of the powerful steroids, especially when reducing dosages. I'm not a medical expert but it does seem that these 2 things combined really do give the body and mind a 'kicking' - and, of course, feelings of Depression can be a natural consequence of all of this :-(. It really is a trade-off....
You are right, the best strategy for dealing with this type of fatigue seems to be to just 'sit it out / roll with it'. Patience is Key in this - easier for some of us than others! And maybe, even better, to try to plan life from day to day so that you can anticipate and manage (or avoid!) potential sources of fatigue and stress if you can. Personally, I have learned so say 'No' to some of my normal activities / demands from others (I am usually Action Man by character): and explain to others (friends, family, colleagues etc) how PMR works and how it affects me. PMR is one of those 'invisible', chronic illnesses that many people don't understand because we look o.k. on the surface but aren't underneath.
On the positive side, if you reduce your steroids slowly and gently using the Dead Slow Nearly Stop method (listed here, somewhere - a maximum of 10% reduction at any time), you at least reduce the risk and severity of the fatigue and 'flares' in symptoms which can last for days at a time. Also, when you get your personal steroid reduction 'gradient' more or less right, you can look forward (hopefully!) to fewer episodes of fatigue and more energy. There are no guarantees, but it seems to work for a lot of people. Just remember, it takes a lot of time, patience and faith in yourself!
There is often light at the end of the tunnel with PMR and these horrible periods of fatigue. A few of us here have started to feel much better / more energetic when we get the steroid dosage 'right' and the symptoms are under control, but it is a delicate process.
I hope this reassures you that you are not alone with your symptoms - and you are in very good company on this forum with many experts and 'friends' who will help you along the way.
Finally try to keep smiling on the Journey. Laughter can be a very powerful therapy too!
Yes, I would sometimes get a feeling of an electrical current buzzing in my body earlier on in the process of PMR, which sounds just like your wire vibrating on high frequency. It was an intense feeling, and a bit scary. It went away after a few months and has not returned. It may have been more obvious when I was trying to do too much.
And Yes I experienced a dramatic change in my muscles where they had no energy and I had to drag my self up the stairs by the handrail frequently. Also upper arm issues where I couldn't hold a hymnal in church...or sometimes even hold a piece of paper! It felt like only 1/2 of the muscle was working. I could move arms and legs, walking, etc, but as soon as I tried to ask them to do something that involved more effort like standing from a chair, climbing a stair, then they failed.
With PMR you have a much lower battery level. Sometimes just getting up and dressed for the day can deplete it. Then I would just lay on the couch until "my battery" had a chance to recharge.
Once I stopped trying to do everything I had been able to do, stopped my part time job, limited my expectations of what I could get done in a day, and started pacing myself and giving myself plenty of time to rest as needed--then my muscles came back around and started to function more normally. For me this was after being on Prednisone for 10 months. Wish I would have realized sooner to give in to the condition and learn to dance with it instead of pushing myself to keep doing stuff.
how very life changing this all is. One month ago I haven't even heard about a condition like this. Now I see how many people around me struggle day by day, hour by hour and still try to live a live with some quality and happiness. And I don't have PMR (yet?) and can barely envision the pain and stiffness you all have to deal with.
I feel very humbled right now. I took so many things for granted and as bad as it is, I have a deeper sence of life now. I appreciate many things so much more and because of this, I believe, I'm in a good place. And I'm so very glad this community is here and we can exchange all our troubles. You have a great day today! Monika
Wow, what a range of descriptions and people who've experienced strange sensations at all different levels of pred. It's a relief to know I'm not alone. Thanks for asking this question, Monika.
At one point early on with PMR and Pred, I had some strange dreams too. One night, I dreamt that I was a pair of curtains. I mentioned it to my doctor and she just told me to pull myself together...
When I first started prednisone, I was having such funny dreams too! I would relate them to my mother in the morning and it made her day! She couldn't wait to hear the latest dream! We would have a great laugh over it! Now that I've weaned down some, my dreams are not as vivid. I miss them! I did not dream that I was a pair of curtains though! That is so funny! Lol
But seriously: I, too, have noticed that my Dream World is so much more vivid since the onset of PMR and the Preds that manage it. Not nightmares, but some pretty surreal dream experiences - you couldn't make them up!
I suppose it's because the Preds are very powerful drugs and, for better or worse, they must affect the Brain's chemistry at the same time as (or in conjunction with) relieving the physical symptoms of PMR? Well, it's arguably cheaper than some of the mood-changing alternatives... (although the red wine works well enough for me)
It reminds me of another vivid dream I had recently where I was a cheeky Jack Russell Terrier dog, leaping about and having lots of fun (as most Terriers do..).
When I (again) reported this to my doctor, she just gave me a charcoal biscuit, patted me on the head and sternly told me to 'SIT'.
Your doctor got humor for sure. Keep telling us about your dreams, or even open a new post post about Prednisone dreams, please! Thank you, the day is brighter again.
I'm sorry, I lied about my doctor (very naughty, I know ). It's just my sense of humour and irony, I try to see the funny side of all of these problems and it's nice to make people laugh a bit on this forum.
Yes, I will try to write some more about 'Prednisolone Dreams', you have inspired my imagination to do this!
You should start to feel better in a few days if it's just pred withdrawal. Don't make another drop too soon, and maybe consider just 2.5 at a time? Some people when coming down from the higher doses find 2.5 every couple of weeks is a little easier on the system than 5 mg once a month. And of course as they get lower they go slower and take longer. No more than 10% at a time.
The way I describe the fatigue I am experiencing is like jet lag so very tired and legs feel like I am walking in a deep swimming pool. I just have to go to bed for about an hour and that seems to refresh me although there is no way and can do things I use to do like dig the garden and wash the car etc. I sometimes have to go to bed twice during the day. I am at 8mg and reducing to 7.5mg using DSNS method after having a flair at Chrismas I went back to 8 from 6mg.
I look so forward to spring. Right now we still have a layer of snow everywhere, but it's thawing. I love to garden as well and used to take on big projects all the time, like buildung a gravel path. I hope I still have the energy, because this year will be different.
We have so many deer here. They munch in everything and we have to replant with deer resistant plants, more grasses now.
I hope you'll get much better with the lower dosage soon and for good.
Akino, your description sounds exactly like what I experience much of the time. V hard to describe - thanks for your description.
I've tapered down from 40mg since Nov-Dec (w one flare in Jan). Now on 17.5mg this week, and back to extreme fatigue. The 'high-frequency vibrations' are worst in my thighs and core muscles - hard to get up once down. But they do affect everything.
GCA alone (Oct-Nov) had an exhausting, totally debilitating effect. Once on Pred, the other symptoms (including extremely high blood sugar levels) kicked in. It's difficult to disentangle which symptom is coming from where. Everything seems to add to the exhaustion, and high blood sugar also causes headache. I have the impression that the Prednisolone might have a cumulative effect on exhaustion etc, as that seems to keep getting worse, even as the dose goes down. Feeling my way. No chance of getting off it any day soon.
The 'spoons' theory is v helpful. With limited energy, decide what your priorities are and get those done first. No races against time - do what you can when you can and then 'go with the flow'.
I find it encouraging to read what everyone else is experiencing. Seems likely that this situation is eventually likely to improve as the steroid dose gradually reduces. That is my hope.
Well, my husband is diabetic so when, on the 3rd day of Pred, I had frequent urination, with 'cloudy' urine (will taste sweet if you feel like trying), plus bouts of double vision, plus back to headache and feeling like 'death-warmed-up' (after the initial first couple of days of euphoria on Pred) - he got out his glucose meter and measured my blood glucose. That was v high, therefore incontrovertible.
When your doctor checks your bloods, blood sugar level is something they should check. Maybe sooner rather than later, to avoid possible complications. But lots of people on Pred don't seem to have this complication.
Luckily for me I was able to go straight on to medication. That was not straightforward, as we discovered that the steroid-induced diabetes was much more severe than his 'common-or-garden' type. And we wanted to avoid going on insulin (might be permanent) so stuck to tablets. So I had a few weeks of blood sugar levels rocketing up and down until we were able to discover a treatment regime that worked. This also involved my adopting a carbohydrate-free diet, which I found very difficult but am managing.
Am still grateful for Pred - still here and still not blind!
Cheers
PS - official description:
When your blood glucose levels become too high your body will do whatever it can to try and remove the glucose from the blood
Signs and symptoms include:
•Going to the toilet more. Your body will try to get rid of excess glucose through urination
•Being extremely thirsty.
•Tiredness. You’ll be exhausted
then possibly
•Fruity-smelling breath. If your body continues to operate like this, acid called ketones will build up. This will cause your breath to smell like pear drops, and can also lead to stomach pain. If ketones continue to build up in the blood they cause a potentially fatal condition called diabetic ketoacidosis (DKA), which can be fatal.
Your question has really made an interesting read, I know I am suffering with fatigue at present, and am now wondering if all the strange feelings I am having which almost feels like an anxiety attack is in fact the fatigue, it's just so difficult at times to work out what is going on.
Toodi, your comment is interesting. I'd forgotten, but there was a point when I was tapering, I think around the 7 mg point, I had a time of feeling oddly panicky. I knew it was only a physical sensation, there was nothing in my life to cause a psychological feeling of panic. And if I remember correctly it only lasted for a few days. But since then I've felt tired, lackadaisical. Before our latest bout of ghastly winter struck, however, I'd had some glimmerings of feeling almost normal again - so there is hope!
I realise these posts were 2 months ago, but have only just read them. I get the anxiety, panicky feelings as well, also with fatigue. My body gets shaky and trembly and I become a bit breathless. I have to lie down for a while. I am now on 6.25. I also get very vivid dreams several times from about 3.30am every morning. Sometimes they are pleasant, sometimes they are nightmares.
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