Any advice about exhaustion

[Here1am]

the last two weeks have been too much but there wasn’t much I could do about it, that’s life. Today I’m having what I call extreme exhaustion, just holding the phone up is taxing. Tomorrow and this weekend I have unavoidable family events where nothing much will be expected of me but I need to travel and make an appearance. Everyone is trying to be both very understanding and don’t really understand. Any advice. Is there anything people find helps them recover quicker more than just taking themselves to bed? I’m looking forward to seeing family but would like to navigate this the best I can. I’m currently at 15 mg of pred after tapering down after an initial GCA scare. All my labs have consistently been in normal range - no elevated markers. All symptomatic, fast hip/leg relief from initial prednisone. It’s been creeping back in, though and I see my rheumy next week.

[SheffieldJane]

I can find myself energised by a change. Had lunch at a hotel in the countryside with my brother and sister in law. I really wanted to cry off. It was actually a pleasant change and my mind was bouncing around after with our conversations. I slept deeply when we returned and solidly at night. I think it did more good than harm. Everyone has gone through something. You feel less alone. Occasionally a psychological boost can over-ride an attack of the swoons.

[Here1am in reply to SheffieldJane]

That’s a good point. I certainly need some fresh air blowing through my brain. Clean some cobwebs out.

[Constance13 in reply to SheffieldJane]

However tired I am these days I push myself to go out - for a short walk or local shopping, a coffee, and I always feel better for it - tired maybe but better.

If I stay in all day I get so lethargic that I can't be bothered to do anything at all! Can anyone tell me how the time still flies?

[piglette in reply to Constance13]

I agree it is a good idea to go out. I try and go down the garden each day and do a bit of gardening. I think I might rot away if I did not force myself to do things and afterwards you do feel boosted up a bit. Mind you a lot of my going out consists of going to the hospital for tests etc, but I do meet new people which is great.

[MrsNails]

Hi, after misreading your name, l thought it was ‘Here l am at 1am’ as looked at my phone at 00.28 😉 & we should be asleep!

I’m so sorry to read how you are feeling, l find sometimes if l drop to too low a level of Pred, the exhaustion soon creeps in, causing me to feel as you describe.

How long have you been on 15mg & what dose did you drop down from?

There is some information in FAQ’s that may help Members of your Family understand the condition more, l’ll attach a link.

healthunlocked.com/pmrgcauk...

You’ll need to take it very easy over the weekend & if knowing expects too much from you hopefully you can manage to go & it may well do you good.

My hunch is you have overstepped the taper & your body is complaining & it’s not a nice feeling.

Kind Regards

MrsN

[Here1am in reply to MrsNails]

I am going to discuss my Pred level with my rheum on Tuesday. I suspect he will want to keep tapering- he’s not convinced it’s pmr but so far hasn’t come up with an alternative. Or it may be a combination of things. Anyway after reading this forum for the last two months I feel better equipped to ask questions when I see him. Much better than my initial visit. I think some times it’s good to exert and I’m looking forward to the people and company. I’ll just have to be clear about my capabilities. We’re all doing the best we can. Luckily for me my very moon shaped face gives everyone a visual clue to remind them. 😁

[piglette in reply to Here1am]

When you first started on pred did it work wonders? If so there is a good probability it is PMR.

[Here1am in reply to piglette]

It certainly did!! The first 48 hours I left my crab shell behind. My Primary likes this Rheumatologist and says his manner isn’t very smooth but from his notes it’s clear he’s listening to me. So I’m going to trust in the process. I’ve had some complications and odd reactions so I think he’s trying to sort things out.

[piglette in reply to Here1am]

Sounds like things should be OK. Good luck.

[whitefishbay]

I am the first one to dread the effort of an event but I usually feel 100 % better after going. Good luck.

[PMRpro Ambassador]

Spreading the process out helps me - for example, travelling at least the evening before and having a good night's sleep even if it means paying for a hotel is always a good move. And having a room available where you can retreat and lie down if it does get all too much is helpful - even just sitting chatting can be exhausting, the noise after a nice peaceful home can be overwhelming.

And really - there is nothing that is essential if you aren't well enough to do it and will suffer afterwards.

[Jackoh in reply to PMRpro]

So often have folk said to me “ but you’re not doing anything you can just sit there and join in conversation “ That in itself can be exhausting so I too often have a plan A and a plan B I can resort to if I am too tired.

[PMRpro Ambassador in reply to Jackoh]

Exactly - and even sitting in a car being driven can be tiring. If you are used to being on your own, or just the two of you, suddenly being surrounded by a complex conversation with people talking at once requires a lot of effort to follow.

[Here1am in reply to PMRpro]

So far so good especially knowing I can recover when we get home. Maybe I needed the interaction more than I realized.

[Constance13 in reply to PMRpro]

I get really tired if we drive for more than an hour. Couldn't understand it at first but I think it's things 'flashing by" that does it.

[piglette in reply to Jackoh]

I found even answering the phone could be tiring.

[Here1am in reply to piglette]

Yes!

[piglette in reply to Here1am]

and lifting my hand to use the zapper on the TV!!

[Constance13 in reply to piglette]

Oh dear! THAT is tired.😂

[Alchemy8]

Have you checked if you are hypothyroid? This is a side effect of Pred and can be lurking there anyway. Apparently our iodine supplementation is insufficient.

[Healthysearch]

Hi, just want to tell you about my PMR history and some research I have done. After being very active and in a stressful situation, I was extremely exhausted .. age 65 in 2017 , lost weight and diagnosed 6 months later with PMR. I was on Prednisone for a total of 17 months. My rheumatologist insisted I go to 0.

After being at 0 a few months, my pains came back but was tolerable.

I am sort of a naturalist and wanted to try many things to help with inflammation. I would say they helped but I still had sore muscles and extreme fatigue.

I recently (2021) read up on systematic enzymes to be taken on am empty stomach. Much literature indicates as we age, our bodies have a hard time clearing dead cells. These build up in our bodies and can be a major cause of inflammation. I can’t say they will help you, but they have helped me tremendously. They act as any enzyme that breaks things down and go after dead cells and even fibrin. I would suggest you read about them and see if you might want to try them…. Best wishes as PMR pain and fatigue is the pits.

[Here1am in reply to Healthysearch]

Thank you. More information is always appreciated since different things work for different people/circumstances.

[sewingscissors in reply to Here1am]

Hi everyone. I am so relieved to see all these replies to HereIam. I feel the same about going out and meeting people. I love my family dearly, but talking is exhausting and I love to chat on the phone, but after a couple of calls I am shattered. And people say “but you are only chatting, you like that” Yes, I do, but get exhausted. And going on holiday really scares me, especially as I am on diuretics! Thank goodness for all you understanding people. You have made my day! Take care and thank you Liz x

[PMRpro Ambassador in reply to sewingscissors]

If you want everyone to see a reply to a thread, it needs to be a reply to the main post rather than within an internal thread - the way this forum works is very strange at times!!!!!