Tiredness

Hi all, I never really understood when people said they were having extreme tiredness cause I have only ever felt tired and needed afternoon nap but nothing to bad most days, but this last week (I've gone to 4mg ) it hit me like a brick, got a job to stay awake and when I am awake I'm yawning all the time.

[Constance13]

Well - now you know what we all talk about. Probably the adrenals trying to wake up.

Take it easy - rest as often as you can . You'll get there!

💐🍀🍀🍀

[Hidden in reply to Constance13]

Well I hope they wake up quickly cause sleeping this much I don't know what day it is or am or pm 🤔

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

They will, but in their own time, meanwhile keep to the slow reductions….and keep on eye out for any other adrenal related issues - bit more info - healthunlocked.com/pmrgcauk...

[Tahiri in reply to Hidden]

Exactly. I wakened at what I thought was 9.30 am - until I noticed that it was pitch black outside, and realised that it was in fact night. I’m down to 2.5 mg Prednisolone and struggling with exhaustion.

[PMRpro Ambassador]

At least you have a decent reason for the fatigue: adrenal insufficiency!! I'm way above your dose and struggle to keep my eyes open - until I decide I'll go to bed and have a nap. Then I'm bright-eyed and bushytailed. I do know what you mean though - it is horrible isn't it.

[Hidden in reply to PMRpro]

I was like that after my nap I felt OK til evening then

[Esradral in reply to PMRpro]

I have virtually slept my way through 5 months! On 15mg since then and reduced by 1mg for a very short period then back up to 15. Have multiple issues and have put on 5 stone in this period alone! Have mobility issues due to leg problems, DVT, stress fracture, arthritic changes in foot causing weight bearing problems, 2 knees waiting for replacement, so have been on crutches continually.” Fed up and far from home” as they say, I have finally started physio (1 for each leg) such nonsense and extra cost to NHS due to doc referrals at different times. Trying everything to get back on my feet and I am well aware the 5 stone is not helping. Lower back pain is excruciating when trying to walk unaided, all of this makes me even more tired. The upside is that when I am sleeping I am out of pain so I don’t try to fight it any more. Trying hard to diet but the pred doesn’t help, I’m not using that as an excuse but I understand what is required it is just getting there.

[PMRpro Ambassador in reply to Esradral]

Cutting carbs does help with appetite and weight gain - and you can eat loads as long as it is protein and fat not carbs,

[arvine in reply to PMRpro]

I haven,t really had a lot of unusual fatigue, I was starting to taper few mos ago, then was having several issues with bowels ,stomach etc, on some antibiotics, rheumy wanted me to stop tapering, so ive been at 4mgs for 4 days, and 5 mgs for 3 days, so have had 3 catscans over last few mos, and on last 2 few mos ago,last one about 6wks ago, dr got results, saying there was a small node on top of adrenals, said most were benign, but would check annually, just wondering if you or anyone has had this happen, and or if any significance in overall affects on body, pmr etc,

[PMRpro Ambassador in reply to arvine]

You would be better asking the question as a new thread - it is unlikely to be seen by others here.

[Suet3942 in reply to arvine]

Hi Arvine. Sane thing happened to me. Was being scanned for another problem and they found a node on my adrenal gland but said it was benign and they would keep an eye on it. I was worried until they explained.

[arvine in reply to Suet3942]

oh thanks for your response, did they say what may cause a nodule to form on adrenal gland, and the fact they can tell by a catscan that it is benign? yes, I was and am a little worried still,

[Suet3942 in reply to arvine]

They just said that it was a common thing to happen. But no idea why

[arvine in reply to Suet3942]

ok, thank you

[Constance13 in reply to PMRpro]

What do you do when you are "bright-eyed and bushy tailed"? I'd love to see it!🤪

[PMRpro Ambassador in reply to Constance13]

Not a lot ... It is all relative

[piglette]

The dreaded deathly fatigue. I went up 1mg and hung around on that for ages. I found I had total exhaustion, even moving my arm was an effort.

[sewingscissors]

Oh yes, I do understand about total exhaustion! The trouble is that you can look so “well” with it, it is difficult for people to understand. Having had my Prednisolone put up and down by my GP, I have now seen an excellent rheumatologist who is reducing by one mg every two months and this seems to suit me. I still get exhausted, but it is not so bad. Good luck 😀

[Sho-Sho]

Totally understand, I am struggling with adrenal exhaustion at 4.5mg (it’s taken me 5 months to reduce from 5). It’s the sort of fatigue when I have been out shopping (rarely do that now because of Covid) I am so exhausted I could just lie down in the street & shut my eyes!

[Pixix]

Can’t believe you haven’t had this before, you’ve been so lucky! I struggled more at 3mg than any other time. I went up to 5mg on advice from my doctor, but only after having a very bad 3 weeks, with some of the adrenal symptoms joining in (plenty of info I found in FAQs & searching on ‘adrenals’. Moving back slowly towards 4mg again. But my body is happier at 5mg! I call it trying to walk through treacle!!

[HeronNS]

Yep. When I was at 4 (the first time, back in 2016) I sometimes felt like I was walking through water. And sometimes the exhaustion would hit me quite suddenly, out of the blue.

[PinkertonCat]

The old Deathly Fatigue. I just weaned off completely after 4+ years of dead slow taper... I can not believe the fatigue would get worse, but it has. Everything is an gargantuan effort right now.

[DorsetLady PMRGCAuk volunteer in reply to PinkertonCat]

Have you had your adrenal function checked? Sounds as if you are really struggling, so might be sensible.

[PinkertonCat in reply to DorsetLady]

Yes.. it would be sensible, but my rheumatologist is a bit stubborn on this. Thanks for encouragement!

[Catseyes235]

I suffered overwhelming tiredness (different from underactive thyroid somehow). when hit menopause...or it hit me! I felt I could happily lie down in the middle of the road. HRT worked miracles within days. Hope you find cause and treatment! Good luck.

[67Blue]

For some reason I decided before I had "fatigue" when on a higher dose (started at 40,) wide awake not enough sleep by far and my legs just felt like cement if I tried to to go for a walk, but I could do things till it all got too much. Once I got to 6 mg I have suddenly started calling it being " tired" I can't explain why but it just seems different. When I walk (for about 40 mins , my limit) I can fell muscles in there somewhere but I'm convinced I could quite happily stay in bed all day, So are letting the easiest little jobs really pile up, I'v certainly got the time but not the willpower. At first I was so pleased to be catching up on my sleep, but I have done that 6 times over so now getting frustrated. I'm sure my dr will be getting very stressed with me seeing as he thought I was over it all by the time I got to 7 mg. Take care.

[PMRpro Ambassador in reply to 67Blue]

Unfortunately, I think it is fair to say that you are not alone in thinking it is all downhill from 7mg. But many people find it the hardest part of the journey.

[67Blue in reply to PMRpro]

Just had my first cataract op so am now bogged down with three drops a day to prevent infection in that eye and two drops a day in both eyes to try and get the pressure down, plus putting that wretched eye shield on at night and attaching with that vicious tape, so it is all getting a bit much with the steroids etc I guess. At least my husband can actually see something now. He has been a bit bemused by the whole GCA/PMR thing. The consultant was pleased with the op, so that is one down one to go, not sure how quickly they are with the second these days, I know people who have been waiting over a year they probably think well she can see now we will move onto the next person, they sure was quick with that one. But the glasses will be the next quandry. Well done the Eye dept. Pity about the MRI scan, the Bone density test and the Prolapse people.

[PMRpro Ambassador in reply to 67Blue]

In that case - no wonder you are struggling at 7mg! Tell me about the willpower bit - and I can't blame it on low pred!!!

[Hidden]

Just update on my tiredness. Spoke to my gp yesterday so got to have blood taken on Monday to test for throid, b 12, iron etc to check they all fine just cause tiredness came on so quickly.