I'm extremely fortunate, haven't had any pain in months.. Probably due to 15 mgs daily of prednisone!
But my oh my! This fatigue comes out of nowhere! I eat very well, get plenty of sleep.. Yet some days I wake up, and feel off! Knowing I'm going to have a bad day, and sure enough.. Fatigue will last all day! Can barely get out of my chair. Walking is such a chore! The toilet.. Whew.. I will struggle getting off.
Then next day I'm fine - ish! Not 100%..but way more energy!
I ask my rheumatologist, he tells me fatigue is one of the side effects of the disease.
Im beyond frustrated! Had to retire from my career as a filmmaker.. I can no longer do my normal 8-12 hour days!
Anyone else having this problem? How do you get through this?
Thanx for listening. 😔
~Kristina
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Swannrise
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This has been an enormous problem for me too. I've found if I set a goal of one piece of exercise per day and make myself do it, it maintains muscle strength and minimises muscle wastage. This is really important, particularly if the steroids have depleted bone mass and caused osteoporosis, as in my case. It's unbelievable what you can achieve if you put your mind to it, and during covid-19 lockdown, I've managed a walk of 1 to 2 miles every day! I don't know how I managed it some days, but I did and it definitely has helped to keep me in better physical condition as well as combating some other symptoms and side effects.
Kristina, has your dose remained at 15 mgs and if so, for how long?
Are you beginning to taper your dose down yet?
The deathly fatigue stems from the autoimmune disease as well as taking steroids. The only thing that has had any positive impact with me has been regular, proper, daytime naps - real, go to bed ones, under a blanket. My natural duration seems to be 90 minutes, following lunch. This symptom has been much worse since my GCA diagnosis, higher doses, and my Rheumatologist being keen that my Pred dose gets below 20 because of my blood sugars - steroid induced Diabetes, another fatigue bringer. A walk in the fresh air can revive you, some foods and the company of energy enhancers ( some people have this gift, often children).
Hello Dear Sheffield Jane, I loved your descriptor "Energy enhancers". I had breakfast his morning with a very dear friend, you look into her eyes and feel alive and yet calm. Conversely, I think PMR patients need to avoid the energy drainers and I expect we all know these? I struck them off my list when I developed PMR 3 years ago. I totally agree about the proper rests too. I can't survive without my after lunch sleeps (usually an hour). No need to justify or explain, it's what we NEED. So fortunate to have retired recently and I can have these! How do people keep going working and with PMR?
You friend sounds very precious! Yes avoid all vexatious people - we do not need them in any shape or form ( it should be part of our shielding) I am grateful not to be working and my heart goes out to those who have to. Creativity feeds the soul, Kristina may find that she can carry on in her world
During my brief history with this disease I have learned many things but for me the most important by far has been how to adapt to what is happening to me day by day.
I have always been super fit to mid forties but then active according to my ability as I got older. My whole life has been blessed with the freedom to do this right up to 7/8 months ago when I reached the age of 67. My wife and I have enjoyed many years of such freedom including living abroad and achieving my dream in building a home that we designed etc,
Then came November last year,PMR ? GCA ? No one could tell me so I was told take 60mg Pred' from the off.(just in case it was GCA,)
Pneumonia I definitely had along with Non Hodgkins plus God knows how many other things that have since evolved.
None of that seemed a problem,well,not in my feeble little brain. I just thought a few tablets would sort it,then carry on with my exercise and normal way of life then job done,I'm very task focused,lol.
Then I got to know Mr Pred' and his side effects,insomnia,severe fatigue,laboured breathing,increased weight,moon face,oral thrush,odema and any thought of exercise became my very last thought because I either couldn't achieve it or just didn't feel motivated.
I then moved onto the next stage of what I call my/the idiots guide to Steroids.I hated them,decided that I would come off them within two to three weeks,thought G.P.'s were enemy number one,shocked that they didn't warn me,(I have never needed health care or tablets more serious than paracetamol,) and then during my brief period of lunacy found this forum.
I am slowly picking up bits from quite a few members/ambassadors regarding issues such as fatigue etc,and what to do/not do. I am trying first of all not to do anything for a short period of time,full stop.( my wife then returns home and sees me sweating like a dog doing such as housework or fitting a new light,defrosting the freezer and etc' so that's a fail,) now I do it in four sections,break jobs down. I take an afternoon siesta,sleep or not. I don't plan in any big jobs,there are always tons of them. But the big one is that I don't set myself up to fail because if I do then I make it a battle once again and that is a battle that I lost a few months ago. That battle then involves being angry with myself,it then draws my wife in crying because she can see this isn't me but she can't fix it either. The stress just keeps piling up for me and I just feel more lost and useless than ever.
So ! the answer to your questions are very simple,so simple that people like me have to come here to find them, fortunately I do .
Good luck,you must already have had many of these little fights and won them,now here is another,take care and keep smiling.
Fatigue was dreadful in the beginning, I was ready for bed at 4pm! Has got better but returns to some extent the first days after a taper. I took early retirement last year so am able to build an afternoon nap into my day - usually an hour around 2 / 3 pm and it really helps. Previously I had never been able to nap but there are loads of meditation / sleep aids on YouTube and they really helped me to relax and drift away. Best wishes
Fatigue is a component of almost all autoimmune disease. And it usually happens because you had a good day and did more than you should - so it is followed by a bad day when you are forced to rest. It is all about pacing ...
I really feel for you. I have had dreadful fatigue so much so it was an effort to use the remote to change a TV programme. I would try and force myself to do something each day in spite of the fatigue which did seem to help.
I remember those days when the remote control was too far away so just kept tv on same channel while lying like a zombie on the settee. Hopefully that is history now.
In my case it was in reaching distance and it was too much effort to put my arm out! I do remember the days you had to get up to change the channels. Kept us fit.
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