Does this tiredness ever go?

[Dorsetgirl17]

Been on pred for just over three years, and yes the pain has almost gone, only says hello I’m still here, if I do something silly, like picking something heavy up. The feeling of being wiped out is getting worse, a ten mins walk means a sit down is needed, this is new. Had opportunity of face to face with Doctor as palpitations are kicking in and a general feeling of nausea. Doing DL very slow reduction and down to one and a half pred . Doctor said adrenal glands would have kicked in by now on that dose, is she correct. Going to be lent ECG machine for 24 hours. Any suggestions?

[DorsetLady PMRGCAuk volunteer]

Hi, nice to hear from you

Would say it is adrenal related-but it not quite as easy as doctor implies -they take time to get back up to speed -and very often a long after after you’ve come off the Pred. Have a look at link -and continue tapering very slowly, small steps -that helps nudge them -and patience and rest.

GP can do a simple cortisol test to check their situation -

just scroll down to nudging adrenals -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

The doctor is right that they SHOULD have kicked in by now - but unless she has checked, she doesn't know if they have done so. What you are describing definitely typical of adrenal insufficiency.

[piglette]

Sounds like the deathly fatigue might be having a look in. PMR and adrenals do not work in sync. Your PMR may be fine but your adrenals may not be very happy. I have found if your adrenals are reacting it is a good idea to stop reducing until they sort themselves out.

[Dorsetgirl17]

Thank you for confirming what I thought. Back to the Doctors….

[Louisa1840]

Dorsetgirl, I am so with you! I've had PMR for coming up for 6 years and I've had to go back up to 8 mgs after a nasty flare a few weeks ago (I had to go to 15 at first to handle it as I flared on 8!). I am tentatively back to 8 mgs now BUT the fatigue is so overhwleming and has been for years. I have some energy for a few hours first thing so I try to get a bit done then. Around 10.30 a.m what I call "The Wall of Fatigue" arrives and I have to lie down for anything up to an hour. The same after lunch........... For the rest of the day I can do a little but it's quite pathetic really. We are all with you, all sharing the same boat if that helps at all?

[cranberryt]

I also continue to struggle with fatigue and have wondered if it is adrenals, PMR or my other conditions causing it. Some days I just have to take a nap. My body will force the matter. lol Others I can just push through. I do struggle with getting 8 hours of sleep during the school year (I still have kids to get to school) and have always neede 9 hours to be at my best so there is that too.

[Hirondelle]

hello Dorsetgirl. I’m in the same boat as you. Down to 3 mg since 6 months. My rheumatologist asked the surgery to do the 9 am cortisol test (no one from the surgery mentioned that you must not take your morning preds before the test but thanks to this wonderful website. I knew). My cortisol level was 98 - normal is 133. I was told online and at the surgery that that was fine as it was higher than a previous test in 2020 when it was65. I’m lucky in that my rheumatologist has referred me to an endocrinologist as she wants reassurance as I do. I AM EXHAUSTED nearly all day, feeling wobbly and whoozy which is very unlike me. Good luck getting a cortisol test.

[PMRpro Ambassador in reply to Hirondelle]

FFS!!!!!!! It is officially adrenal insufficiency - NOT fine! But it showed promise ... And that is ALL you can take from that. Not surprised you feel knackered, wobbly and woozy and you definitely need a rescue kit or instructions just in case.

[Hirondelle in reply to PMRpro]

I asked for the rescue kit and they just laughed. I tentatively said maybe the awful vomiting and diarrhoea could be adrenal insufficiency and the Nurse said ‘ oh have we be consulting Dr Google? I was too tired by then to say ‘have you read the emergency card people like me carry around?’

[PMRpro Ambassador in reply to Hirondelle]

Hmmm - shame you didn't!!!!!

[Dorsetgirl17]

Thank you everyone for responding. This lethargy and nausea has taken over from the PMR pain and am definitely going in all guns blazing to ask for the relevant blood test just to prove I am not imagining it.