Tiredness

[Uglow]

I’m so tired so tired, iv gone fine from 20mg to 17.5mg. Has anyone had chemo on here it’s that kind of tiredness. Overwhelming. Advice needed please

[PMRpro Ambassador]

The fatigue is an integral part of autoimmune disorders and in some people pred also leads to the same effect - not everyone gets the pred wings and think they can fly! But being on pred doesn't mean you are cured and can go back to your previous levels of activity. The underlying disorder is still there, chugging away in the background and making you feel as if you have permanent flu.

However - it is something that the pred doesn't touch and you must learn to manage it yourself, there are no magic cures. You have to learn your limits and pacing:

healthunlocked.com/pmrgcauk......

[SnazzyD]

That’s quite normal. At your dose level I was having solid 2 hours sleeps every afternoon and still did nothing much at other times.

[Marijo1951]

Yes, I know just what you mean, and don't know if it's primarily caused by the illnesses, by pred or (now that I'm down to 5.5 mg) adrenal insufficiency. I do know that I do very little, pacing myself between one light domestic task and another, but feel by the evening as if I've just done a 12-hour shift as a lumberjack. For example, I've just spent an hour or two sorting out some jigsaw puzzles to give to a charity shop, and now at 7.30 I could easily go to bed and be out like a light in 5 minutes. In the past I didn't even know it was possible to be so thoroughly exhausted. I'll certainly never again suspect anybody of malingering without extremely strong evidence. What saddens me is that I know that some acquaintances, including family members, think I'm exaggerating the tiredness.

[Uglow in reply to Marijo1951]

It so hard to get people to understand it’s not just tired knackered it’s total exhaustion beyond anything iv ever felt. I get you.

[Manchesterlady]

Hi , I have had chemo ,and totally agree it’s the same sort of tiredness/exhaustion,and agree with PMRpro you just have to pace yourself .Don’t make the same mistake as me ,on a good day think that you can do all the things you used to do because you will certainly pay for it

[SheffieldJane]

I am experiencing this overwhelming fatigue also. I am on Tocilizumab injections and 10 mgs of Pred. Afternoon naps and early nights and I’m still wobbling. I have PMR, GCA/LVV 5 years overall. I wish I knew the solution, I pace activities such as they are. I have wondered about undiagnosed long COVID. I felt acutely unwell for several months no typical COVID ( I thought).

[Uglow in reply to SheffieldJane]

I thought about long covid because my son had ME years back it is all very similar sounding but no idea tbh

[Janet57]

For most it does get better as pred levels reduce. I learned the hard way by trying my ‘I’ll beat this’ attitude I had towards everything. So I continued pushing hard and wondering why I wasn’t feeling better, in fact feeling much worse. So exhausted all the time. I continued in a high pressure job for way too long. Eventually I found this forum and realised I had to recover in a totally different way. I had to learn to pace myself with everything, be kind to myself, listen to my body, take the advice that the experts kindly gave on here ........ and it worked. Before COVID I was doing Aqua classes 3-4 times a week, playing golf (albeit in a buggy), even went to Antarctica-one of my bucket list trips ........ enjoying life. You will need to be patient but for most PMR goes away. I’m still on 3.5 mg 8 years in but for me that’s real progress. I hope that you too begin to feel better in the days and months to come 😊

[Uglow in reply to Janet57]

I seem to keep trying to get it so to speak lol it’s not working tho’ I’m going to try pace myself better. Wish me luck I’m my own worse enemy sometimes or do they say. Thanks

[Flosy]

Hi.yes I know what u mean,one day I ok and next very tired and no energy.all I want to do is sleep.