I am very lethargic, and although I try to do normal household cleaning, I find that I am exhausted most of the day. I have been on steroids for all this time, and have put on lots of weight round my middle. I started the steroids on 15mg, and reduced now to 5mg. I thought that I would begin to feel like my old self, but have no "go" in me at all. Has aanyone else had this problem?
Thanks,
Grace
Yes,my get up and go disappeared. Then of course when I have a good day I do too much which results in a few awful days.Despite knowing that levels of activity should be the same every day I always forget till it is too late then my husband states "I knew you did too much".Mind you when it got to the stage of feeling that my get up and go had emigrated I returned to the GP and am now back under the rheumatologist-maybe you should mention the permanent fatigue to the doctor
PMR does seem to make us different people and lethargy/exhaustion is a part of the condition. I feel very like you and really have to force myself to do things. Also, I live on my own so there is no one around to spur me on which I think makes a difference. Strangely I often seem to have more energy in the late evening when I should be going to bed. I think I have read recently on this website that even though we are reducing the pred it takes some time for our bodies to return to 'normal' and I guess with the passing years normal may not be quite what it was. Don't lose heart Grace. All the best, Diana
Hi, yes I can identify with you. I was diagnosed November last and started 20mg pred for PMR and am now down to 9mg. Also just recovering from some bug/virus which floored me for about 3 weeks. Also was diagnosed with ME/CFS 14 years ago. I thought the lower the pred, the better I would feel. Not so. Zero energy most days. I can only do 1 thing in a whole day and that could be making dinner or my son taking me shopping. If I shop I cannot cook and vice versa. This must be my new normal. I am just accepting that this is the way it is at present and hopefully will improve as time goes on. Regards Pat
Hello muirkelsi, you say that you are exhausted most of the day but you also say that you have put on lots of weight. Well I have put on lots of weight, 3 stone, and I definately can feel the difference, eg, energy levels. Perhaps that could be an answer, I'm hoping that when I loose more weight I notice a difference. Good luck, tina
Hi muirkelsi. Remember that you are now at the dose of pred that means the adrenal glands have to start doing some work again and cannot rely on the steroids to do their work for them, which will naturally tire you out. You could ask your doctor to have a test to see if you adrenal glands are waking up properly.
Somewhere between my starting dose of 15mg pred and the 3mg that I found myself on one year later, I also lost the energy to do more than one big task per day, and found myself taking midday naps to recover some of the lost energy.
It was the same whether I worked a few hours in the shop or rode my bike through the hills for the same two or three hours.
Since my pmr symptoms were also returning badly at the 3mg level, I increased dosage back up to 5mg and my energy was much better. I have since gone up to 6mg to further manage my musculo-skeletal discomforts, and feel that this is a dosage level (at my 140lbs) that I can manage without need for naps and without so much shoulder "stiffness".
So, your symptoms seem consistent with my own experience with having pmr.