Tips on how to deal with fatigue

[Hiibilly]

What tips do people recommend for dealing with fatigue. I have uped my Prenisolone and have stopped feeling weepy but. I am still feeling absolutely wiped out.

[HeronNS]

I note from your previous post that you are at 10 mg, or possibly 12.5 mg. At that level your body is receiving more than enough cortisol through the pred to avoid adrenal insufficiency. Now, if you have been feeling a bit better you may have done too much. Feeling better with adequate medication is not the same as actually being better. All of us have had to learn pacing. In my case (5.5 years on pred , 2 mg for last 4 years) I find I still need after all this time to balance every period of activity with an equal amount of down time. And it is astonishing the things which can exhaust us. In these covid lockdown days I find getting together in a safe way with one or two friends for an hour or two can absolutely exhaust me for the rest of the day! Have you read "The Spoon Theory" and/or "The Gorilla in the House"? These both describe what it's like to live with an autoimmune disease. Can be useful in helping our nearest and dearest understand us better too. Hopefully someone can find a better link to these stories than the one I have, which has been half-buried by advertising.

And as you get close to 7 or 5 mg (in a few months time, no hurry) you will probably have fatigue caused by sluggish adrenals as it takes a while for them to recover from the suppression caused by pred. In that case continuing a very slow taper is best.

[Hiibilly in reply to HeronNS]

Thank you I cooked for my husbands birthday on Saturday felt terrible on Sunday, better yesterday so got on with some Christmas prep, so yes over did it again. I new a little about the adrenal system from research about other autoimmune conditions I didn't know about the Prenisolone doing what you explained. I easily forget to be kind to myself. Frustration not a good bed fellow with fatigue.

[HeronNS in reply to Hiibilly]

Most have us have been there. We are so used to "doing" for others we forget to look after ourselves. Believe me, after over five years of pred and getting on for nearly seven with PMR, I have definitely learned to put myself first!

[SnazzyD]

In a word - REST. It’s not a doing about situation, it’s a case of doing as your body tells you which often doesn’t fit with our plans and expectations.

[Hiibilly in reply to SnazzyD]

Good point! You plan a day to help manage what needs to be done and what you need to do for your metal health. It's adding your physical ability and how your body is feeling. I haven't seen my son since July so I will have to plan carefully what I can do. Thanks again for your help

[SnazzyD in reply to Hiibilly]

It’s beyond frustrating if you’re a doer to keep having to rein in plans and activities.

[PMRpro Ambassador]

healthunlocked.com/pmrgcauk......

is a collection of articles about fatigue.

What dose of pred are you at? Because that is a crucial question to make suggestions. From your reply to Heron I don't think you have an adrenal problem - you have a pacing problem. One thing you have to learn is that you have a new normal and it is likely to be very different from the old one. You have run out of spoons - and you can't borrow them in advance. Sometimes you can have a very restful day to do a bit extra the next but not always. And planning busyness on 2 days out of 3 is never a good idea.

[123-go]

I have much in common with HeronNS. I am currently on 2.5mg and experience some tiredness but not the awful earlier fatigue. I have a lie down most afternoons and sleep for 30-40 minutes or sometimes I allow myself to nod off in the armchair. I try to do most necessary chores during the morning including prep for evening meal.I often cook twice the amount we need and freeze half for a 'down' day.

Yes, you do need to pace yourself and listen to what your body is telling you.

You will get there.

[fmkkm in reply to 123-go]

I take a nap every day. It’s like a reset, without it I’m a mess.

[Noosat in reply to 123-go]

So true ! I am at the same point as you are at. Don't fight it, adjust to it and over time it will change. During my lie down, I no longer want to sleep. I either read or write.

[123-go in reply to Noosat]

I would never fight it..I just go with the flow.🙂

[Noosat in reply to 123-go]

[MsDirecto in reply to 123-go]

I appreciate the idea of preparing the evening meal earlier in the day. It hat also competes with my ideas about doing brain work early in the day. I take my 2 dogs to our off leash dog park about an hour before sunset.By the time I get home and feed them, and watch evening news, I am so tired that creating an interesting meal - and cleaning up- take major effort. I still think of “weekends” the way I did when I was working and sometimes create a nice batch of hearty soup to freeze. Since I try to avoid gluten as well as eating more plant based foods, I find more has to be prepared fresh(er). I don’t bring home things that i shouldn’t eat because I don’t want to fight with myself, so keep nuts and blueberries available for snacking..which takes the edge off enough that I then really don’t want to bring out the pots and pans. In addition to the fatigue, that’s also when the lower back pain starts. Just writing this down helps me realize I need to re-think how I do things.

[123-go in reply to MsDirecto]

Well, that's good. I think most of us have had to go through the trial and error process until we eventually realise what is best for us 🙂.

[jinasc]

Just in case you have not read 'The Spoon Theory'. Here is a link that friend Heron NS wanted to put in.

You can download and read it whenever.

butyoudontlooksick.com/arti...

[Hiibilly in reply to jinasc]

Thank you all for your kind words I have heard of the spoons theory, but always worth a revisit. My spelling and grammar have gone too as mentioned in another post a few days ago. I have also mentioned before that I had ME in my late twenties but that seems like a eon ago and I didn't manage well then, newly married wanting to start a family having a career all put on hold. I really appreciate all your help

[Thelmarina]

I do most in the morning, especially at this time of year. 20 minute nap and reading in the afternoon. However psychologically I find it so important to a)have a task and b) complete it! But a couple of tasks is enough to make me feel I’m in control and deserve my rests. I can feel quite virtuous 😀

[Noosat]

After 2 years of tapering to 2.5mg, I have learned to accept this condition all the way. On the bright side, after having aortic valve repair a week ago, I find that my fatigue is no worse and even a little better, the last 2 days. I try to be positive (not always easy) and my daughter who calls me twice a day is a great help in that regard. Remember, the mind is an extremely powerful tool. I hope you have a very good day. Here in Texas temperature is to go to 74 high. Hurrah ! Both birds an I will be happy.

[Hiibilly]

I have been back down to 10mg but just couldn't manage not the severe pain I had in previous attempt to reduce but definitely PMR symptoms ache shoulders and hips and very weepy. So I asked the doctor if I could go back to 12.5 and he agreed and I will attempt to reduce more slowly in the new year.