Fatigue etc

[kathleen18]

Is it 'normal' to experience fatigue and 'woolly head' after 8+ months? I am now on 8mg Pred after a month on 9mg and prior to that 10mg and 15mg. Am trying to reduce 1mg a month if possible and am getting fed up with not being able to lead a normal life. I am elderly so time is not on my side and don't want to spend my old age like this!

[DorsetLady PMRGCAuk volunteer]

Hi Kathleen

sorry to say - yes it is normal. Most of us get the woolly head at some time or other in varying degrees. The fatigue can be due to more than one thing, could be the Pred, could be the illness, could be your adrenals glands thinking about working again. Or maybe you are trying to do too much, you do need to pace your activities, not try and live your life as normal - it’s not normal for the time being - whether you like it or not. As you are only 8 months in you’ve got some time to go yet

As we always remind people just because you're on Pred and feel better it doesn't mean the PMR is gone. All the Pred is doing is controlling the inflammation caused by the underlying PMR- and that's a serious illness. Pred is only like a plaster over a broken bone or a sticking plaster on a cut. It stops the original injury from getting any worse, but it doesn't actually mend it. Time mends, along with a bit or a lot of TLC.

[kathleen18 in reply to DorsetLady]

Thank you I did try to live a normal life but realised I could not, so cut it down to only one activity a day plus rest but it doesn't make a lot of difference. I took up swimming each week for exercise but have decided to give it up because I feel so exhausted afterwards. It is so frustrating when people greet me saying how well I am looking and I don't want to become one of those old people who talk about their health all the time!

[daworm in reply to kathleen18]

well talk about it on here, this is the place, we want to hear!! its cathartic!!! (I had to look that word up to make sure its the one I wanted)

[DorsetLady PMRGCAuk volunteer in reply to kathleen18]

I know, trouble is Pred does make you look good on the outside no matter what’s going on inside!

All I can advise is be patient - you will get through it, but I agree it’s a flaming nuisance and very frustrating whilst you’re going through it!

[kathleen18]

Thanks. I have given up some activities and try to pace myself and rest but it is beginning to get me down. I keep being told how well I look so I don't think anyone believes that there is anything wrong, not that I want to talk about it anyway.

[HeronNS in reply to kathleen18]

I usually laugh and say it's the meds!

On the other hand, your distress at not being able to live a "normal life" got me thinking. It took a while but I think I'm nearly reconciled to the "new normal" which is now my life. I do tend now to put myself first, so, for example, if going for a walk every morning means there's no energy left to do housework or cook, so be it. I've learned to pick my battles, so instead of leaping on every civic issue with maximum energy I let others do it, and participate rarely. Mostly, I think, I'm beginning to understand that this my time to "stop and stare". Strange to think that, once it was treated, PMR could have given me this gift.

"Leisure"

What is this life if, full of care,

We have no time to stand and stare.

No time to stand beneath the boughs

And stare as long as sheep or cows.

No time to see, when woods we pass,

Where squirrels hide their nuts in grass.

No time to see, in broad daylight,

Streams full of stars, like skies at night.

No time to turn at Beauty's glance,

And watch her feet, how they can dance.

No time to wait till her mouth can

Enrich that smile her eyes began.

A poor life this if, full of care,

We have no time to stand and stare.

~William Henry Davies

[Baileyw06 in reply to HeronNS]

So true!!!

[SheffieldJane in reply to HeronNS]

Lovely Heron, thank you for posting. That is me on a very good day and it is a gift. 🍂🍁

[kathleen18 in reply to HeronNS]

That is one of my favourite poems, thanks!

[SheffieldJane]

I was just thinking today that my woolly head was better than it has been. I am thinking clearer and I don't have nominal amnesia ( forgetting names) so much. I have had PMR for 19 months and counting. Still very tired and definitely need naps, whether I choose to have them or not. I am wobbling at 6 mgs of Pred.

You do sound fed up. At least this condition has an end to it. I thought I had something much worse before I was diagnosed. I know what you mean about time - it can seem such a waste. Try to do something nice for yourself. You need cheering up. 🌷

[CT-5012]

Hi, You have done well to reduce so far in such a short time don't spoil it now by doing too much, I found that out the hard way. Do the things you enjoy and forget the rest. It's a problem looking well when you feel like crawling into a warm comfy place and not coming out until you are better. I do understand your frustration with the foggy head and not being able to do your usual things but the only way is to pace yourself and rest tomorrow is another day. All good wishes.

[kathleen18 in reply to CT-5012]

Thank you

[Riversnan]

Hi Kathleen 18

I have got dreadful foggy head at present, and would like to offer a word of warning about doing too much. I have had PMR ....diagnosed ... for 17months now. I did so well and was feeling so good I decided to decorate my lounge last July, I went at his with great gusto, then had a couple of holidays and just kept going at a normal pace.. for me.

I then caught a normal cold which treated me badly and lasted about a month before I felt better, since then I have just gone down further and have gone from taking 6.5 mg and I am going to go up to 11 mg today as I am feeling so rough again.

My problem is I can’t allow myself to slow down enough but I have resolved from today it has to change.

I would just like to say that I think I have done this to myself by trying to ignore this disease but ..it takes no prisoners and I am going to have to give it more respect.

Try not to ignore it and put yourself back after all the work you have done to get where you are.

Take care

Riversnan

[kathleen18 in reply to Riversnan]

Thanks

[PMRpro Ambassador]

The fatigue and woollly head are part of the autoimmune part of the condition. That isn't touched by the pred, it just manages the inflammation to allow a better quality of life. It will probably improve later as the autoimmune bit calms down and fades in activity - which it will.

But don't ever forget - you are not reducing relentlessly to zero pred. You are looking for the lowest dose that gives the same result as the starting dose did. That is not the same thing at all. I don't compromise on dose and most of the time I DO lead a normal life for someone my age. There are a few things I don't do any more (ski, for example) but I travel and do the things I want to in retirement. I lost my 50s to PMR because it started at 51 and I had 5 years with no pred. Then I had a major wobble 5 years ago when I had severe effects from myofascial pain syndrome (MPS) which was treated with i.v. diazepam as a muscle relaxant and I had a very nasty drug reaction. But once we worked out how to manage the add-ons in other ways things have steadily got better and now, in my mid-60s, it's pretty OK.

[kathleen18 in reply to PMRpro]

Your advice is so good, but I am older than you and time is running out!!

[PMRpro Ambassador in reply to kathleen18]

How do you know - maybe you'll get a telegram from HMQ!!!!

[Sandy1947]

How could you possibly manage for 5 yrears without Pred? We’re the Drs. all woolly-headed?

[PMRpro Ambassador in reply to Sandy1947]

I managed - I survived. Woolly-headed? Dunno - obviously hadn't majored in rheumatology...

[Hidden]

Hi...i felt worse at about 8months. I had to go back up for a while and when I did go down to 8mg it was at .05mg. As said PMR itself causes those symptoms so perhaps you have tapered too quickly like I did on GP advice. That said I am one of the 20% who are so-called atypical and don't get best out of steroids. Prior to diagnosis I thought I had early inset dementia at 55 such was the woolly headedness and confusion. Until you can be sure that it's steroids and not PMR itself causing your current level of fatigue perhaps hold steady or discuss with Dr if you can go up and come down more slowly. Good luck.

[kathleen18 in reply to Hidden]

Thank you good advice

[kathleen18]

Thanks at my advanced age time is not on my side!!

[Hidden in reply to kathleen18]

That's why determining whether it is PMR or steroids (or mixture) is so important. My woolly headedness has improved the longer I have been on steroids and fatigue and weakness improved since I have been on mycophenolate a steroid sparing agent (bad side effect for first 4 weeks but fine now). I can feel your sense of urgency and really hope you feel better soon. 🌻

[kathleen18 in reply to Hidden]

Thanks the woolly head and fatigue do lift for short periods so I know that it can pass but of course I am impatient and want it to go forever, and it is very boring pacing oneself. Then there are bad spells in between..... Oh well many of you suffer worse things without complaint.

[Hidden in reply to kathleen18]

Don't be so hard on yourself. As an Aries ram I too am impatient! We each have to suffer what we suffer....no ranking or measuring serves any real purpose apart from making you harder on yourself and how you manage what you are going through. Enjoy better days...without knocking yourself sideways. 🌻

[jevuki]

Hello Kathleen, I am sorry to say this is where we landed. I too get frustrated but then I tell myself it is what it is and make the best of it. Walking is most difficult since I am in the process of getting a hip replacement and scared to death that the PMR will come back full force. I too want my old life back but we just have to re-invent ourselves to get thru the days. Good luck to you

[kathleen18 in reply to jevuki]

Thanks and good luck with your hip replacement!