I’m getting really bad fatigue at the moment and have no idea why. Come 11am I am ready for a sleep which I can’t do as I’m working. It then hits me again at 3pm I can be playing a game on my iPad and just nod off with it in my hand. I have never had it this bad before. I am currently on 5.5mgs of pred and haven’t decreased it as this fatigue hit me. I have been on this a while and am finding it impossible to reduce any lower atm. I know there is no rush to reduce but just don’t understand why this has suddenly hit me so hard again. Any ideas would be grateful received as it is now getting impossible to work.
Deadly fatigue : I’m getting really bad fatigue at... - PMRGCAuk
Deadly fatigue
Written by
Neverending63
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49 Replies
•
Hi Neverending
The clue is in your question ~ I am currently on 5.5mg ~ this is the most likely reason, how were you at 6mg? Any Better?
Sometimes we hit a level where even 0.5mg can make a huge difference & as you’re working there are other demands upon you, 5.5mg is actually less than our Adrenal Glands of Cortisol equivalent produce if they’ve not been depressed by Prednisolone, so if you were OK at 6mg, go back to 6mg & see how you feel.
When l was working l couldn’t get out of my chair after 2pm l was simply exhausted & in such pain that was eventually why l decided to Retire early!
Best Wishes
MrsN
Neverending63• in reply to
Ty I still had the 3pm fatigue but not the 11am one at 6mgs. Think I will go back to 6mgs and see how it goes.
The 3pm isn’t so much of a problem as I finish work at 2pm. I still have 12 years before I can officially retire but don’t think I will last that long. Think I will be retiring early as well.
Hope you are feeling better now and your increase is working.
• in reply toNeverending63
Definitely worth a try, the fatigue is such an awful feeling & people just don’t understand why it suddenly just comes over you.
I slumped down on many a random chair including one in a bedding display in a store!
Good Luck 🍀
fmkkm• in reply to
Yes, fatigue is such a mystery. I think we need a new word to describe it, fatigue to the general public just means you feel a little tired and need a rest. I told my husband it feels like someone opened a trap door on the top of my head and poured a bag of sand in my body.
Dewdrop456• in reply to
Sometimes, at work,the floor even looks tempting !!
Hidden means the person has left the forum altogether so won't see your reply. The thread is over 5 years old!
Oh sorry. I got on there because I clicked on link from a current thread again today as I was in a rush yesterday. I was looking for some advice that you gave someone about Paracetamol as a test regarding Flare confusion.
Ok - just wanted to be sure you wouldn't be upset if you got no response.
Thank you.
Once you get to abut 5mg your adrenals really have to think about working. I found 7 to 5 really hard and 5-3mg difficult but slowly improving. My Endocrinologist said that 5mg is not quite low enough to make them realise they need to be on duty all the time, not when they feel like it. He said I should push through to 4mg (provided GCA ok) to really make them know it’s time. When I got to 3mg my energy was much more reliable and some days I can get away without a nap. Still wouldn’t be able to work and at the age of 55 too.
Thanks heavens for this knowledgeable group. On 3.5mg and still tired but now complicated from possibility of prednisolone induced diabetes. Just had the blood test this morning. Balancing all these side effects from the necessary prednisolone is a challenge and this group sharing so much practical and sensible experience is invalueable. Thanks to you all.
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Almost certainly your adrenal gland function hasn't caught up with the dose.
healthunlocked.com/pmrgcauk......
might help a bit. And for showing people to explain the difference between the fatigue we experience and "being tired".
As Snazzy says, the trouble is you have to be low enough to poke the sytem into reliable action but to start with it is too low for you to function well.
Ty it certainly does help.
At the beginning of PMR it's all about getting the right dose. Then it's about lowering the dose. And then you see all the people struggling on lower doses and working to regain health so there's no easy spot in all this is there? At least my pain has greatly lessened. I'm glad for that and for all the help I've found here .
The help here is incredible. There is always someone that can advise you
Are you still at work Full-time?
Working everyday and trying to do the push past this point between higher Pred and adrenals waking up might be too much.
Trying to keep going at normal activity when your body needs time to reboot and adjust may be what's making all this worse.
Would it be possible to take a couple of weeks off work while your body gets used to the change and lets you head to 5mg and lower.
If not now , in a month , after you have a short time back up at 6mg again , and take the chance to boost your vitamin and mineral levels to help give you the nutrients needed to prepare the body to cope with the possible side effects.
Bee x
No I work 3 days a week 6-2. I have worked that a long time due to my RD. Think I need to get my vit and minerals tested to see where they are at. I will check out medichecks as GP is useless. Ty for the advice. X
Life seems to be all about PMR and I really hate it.
Wonder what we talked about before it all kicked off , we must have had so much free time!😋😂😂
🤣😂🤣 so true!
Just added a reply on Wrayburys new post that might make you laugh.
Or at least wonder why I haven't murdered some of my nearest and dearest yet.
Oh the Joy of GCA/ PMR!!!
Yup it made me laugh. What's that old saying "if you don't laugh, you'll cry" Quite appropriate sometimes
You can expand it .
If you didn't laugh you'd cry , or find yourself with alot of bodies to bury!😂😂😂😂
I would have to employ someone to do that for me. My shoulders are no use for digging ⚰️😆
I have been yo-yoing due to various ops recently and now am down to 5mg again and the fatigue has really hit me. I was going to stick at 5mg for three months and see if it improves as it is probably the adrenal glands. I find I can’t watch a TV programme without going to sleep in the middle for a short while then waking up and finding I missed part of it. I now record all my programmes apart from the news and just spend ages rewinding to the place I think I fell asleep!!
Maybe it is a reflection on the quality of the programmes!!!! To be fair we only have a restricted choice of channels but between the UK terrestrial stuff we get and the entire German/Austrian/Swiss channels there is frequently zilch that would keep me awake!!!!
I do agree TV is getting pretty bad nowadays. I have Netflix and Amazon Prime as well. I could spend my entire life watching films and rewinding all the time!
Totally the same either my eyes give out or I drop off , really annoying with some of the great films and box sets around at the moment.
On the other hand , unlike the days before this fatigue you can't wake yourself up with a bit of exercise or mental activity.
When it hits it's like an ACME safe thrown from a roof . I try to explain the sheer weight you feel in every limb and joint.
And moving is like wading through peanut butter while pushing past a thousand leaded curtains. xx bee
Good description. I must admit I stayed awake for Roma last night. Really brilliant. I wonder how many Oscars it will get.
It's a really incredible line up of films this year so it will be hard to tell.
I can't even work out which group in film they are desparate to show they don't overlook which often helps you see how the cut will go.
The Favourite seems a perfect choice to win lots , it's both a brilliant film and has the ability to be enjoyed by people of all types , and a history helps get points , like 'Amadeus' in style.
But Roma , which I believe the chose as a nod to the straight to TV industry to show they weren't behind the times, is suprising them at how much popularity it has with judges. They are also desparate to give something to Black Panther . I will just be happy as long as Olivia gets Best Actress , she deserves it for all her years of work.
I think Roma is a bit like Marmite. It reminds me of Bunuel films. It will be impressive if it does win a lot of Oscars. I must watch the Favourite next.
Wow found a fellow film buff , excellent!!
I was lucky , because I got a private showing with my daughter , as I find going to the cinema quite hard these days , but we had been helpful in keeping our local Film and Arts Centre over the years so when they heard why I wasn't going in as I used to they wanted to help.
I agree, I find getting to a cinema and then sitting a bit much. I have Netflix and Amazon Prime. I actually got Amazon Prime so I could see the US Tennis Open though.
I use both too .
I will have to start sending you recommendations of what I find and vice versa.
xxx
That’s exactly what I’m like. Don’t think I ever see a programme to the end between 3-5pm lol
• in reply topiglette
We put everything on to record or watch catch up & keep anything complicated to watch earlier in the evening as l always miss about 20mins mid way through otherwise!
Lol! I do this too....love my tv recorder! 😆
I thought my recorder had broken down so I bought another, obviously made the first recorder jealous, as it resurrected itself. I now can record double the number of programmes!!
😂😂😂😂😂
My fatigue is similar to yours, I am currently at 6 mgs. I have had the Synacthen Test and my Adrenal glands are not functioning as they should. I am seeing an Endocrinologist next week. It is important that I have this knowledge because if I become ill, have an accident or experience severe stress, I need to increase my steroid dose immediately. In the meantime I cope by having a regular nap in the afternoon.
Best plan if it's good for the Spanish we should do it too!
Hope they get you sorted out quickly Jane or at least give you some answers.
Roma , definitely a great film , the Favourite is too , but I still had to choose my moment to watch it and at one point had to pause and wake myself up as I could feel the dreaded fatigue pushing in.
I have not seen the Favourite. Yes, both Roma and the Favourite have 10 Oscar nominations.
Perhaps you could have the same test and check your adrenal function like SJ to make sure you are healthy enough for the next step down before you carry on.
I was just thinking the same thing. Maybe worth getting the test then at least it will be one thing I can rule out or know it’s that causing the problem. Ty.
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