Decision exhaustion and grit my teeth?

[Enfin]

Making decisions and having to concentrate seem to be as exhausting as physical exertion . This has put me off driving more than a short distance which is a nuisance as my husband doesn’t drive, though living in Brighton means most things are accessible.

Yesterday I thought I’d be brave and drive to a garden centre, an all of 20 minute drive. Finding half a dozen plants for a seaside balcony, worse having to decide which variety, left me completely exhausted and despite caffeine boost it seemed a very long drive back!

Does anyone else have decision and concentration problems? It’s not quite the same as the total brain fog I had before pred..

Today pain and weakness in my arms has returned. I’d forgotten what it was like and the double tiredness. I’m slowly reducing from 17 to 16.

Do I grit my teeth and rest till the pain settles or up the dose? I’m travelling up to Manchester on Tuesday to see my grandsons (6 month and 3 years) so I want to be as well as I can for that?

[SheffieldJane]

I would be inclined to return to the dose that I was last comfortable at and stay there until my symptoms settled down

I recognise the decision making difficulties from earlier in my PMR journey ( 3 yrs 4 months). I still have forgetfulness, particularly of names ( actors etc) I always put this down to “Pred. Head” but I’m down to 4.5 mgs and it’s still there. The decision making difficulties were usually down to whether I thought I was up to doing something or going somewhere and changing my mind as it got nearer. Well done for facing your fears. I hope you managed to get some plants ( even random ones).

[Enfin in reply to SheffieldJane]

Thank you. Think plants will be okay - once I find energy to plant them!

[DorsetLady PMRGCAuk volunteer]

Hi,

Brain fog is a well recognised affliction for anyone who has a chronic illness and/or inflammatory illnesses. So double whammy for us!

There are various articles on internet relating to this subject, but they usually refer to fibromyalgia or rheumatoid arthritis - but same applies to PMR.

If you have a return of symptoms, then maybe you have gone below the level of Pred you actually need, and that may have exacerbated the brain fog- and your foray yesterday may have been the final straw.

Personally I would up your dose for a few days and see if that helps. The trip to Manchester won’t help if you’re already feeling below par! And as you say, you want to feel the best you can.

[Enfin in reply to DorsetLady]

Thanks, I’ll try upping the dose. I know it’s wrong but I find myself associating dose tapering with ‘successful’ management of my PMR. Doh!

[DorsetLady PMRGCAuk volunteer in reply to Enfin]

Successful management is taking the correct dose at the correct time - and sometimes that can mean increasing as well as decreasing! If you taper when you shouldn't - its not at all "successful"!

[PMRpro Ambassador in reply to Enfin]

Management of PMR means you are looking for the lowest dose that manages the symptoms as well as the starting dose did. As DL says, the right dose at the right time - and that means not overshooting at any point. And the activity of the underlying autoimmune disorder can also vary over time, going up as well as down for all sorts of reasons. If you need more - you need more. And there are events that influence that.

[PMRpro Ambassador]

Are you travelling alone to Manchester?

Driving isn't something that has ever bothered me badly while on pred - but I wasn't at as high as dose as you. But yes, concentration and decision-making is equally as tiring as physical exercise - and that did figure with both PMR and with pred.

[Enfin in reply to PMRpro]

My husband’s coming with me and we’re going by train - it’s just the cross London bit from Victoria to Euston I find hard...

[PMRpro Ambassador in reply to Enfin]

I found that hard pre PMR and pred!!!!!

Enjoy though!

[scats in reply to PMRpro]

Me too!

[Rugger in reply to Enfin]

Check out the no. 73 bus. Door-to-door from outside Victoria to Euston forecourt! It takes a while, but it's free with a bus pass and I people watch and window shop along the route. I use it as I'm phobic in the Underground!

[Enfin in reply to Rugger]

Thanks - I’ll need to check if I’ve enough time between trains

[scats]

I find travel especially exhausting, allways have. Since PMR I have not been able to visit my grandchildren and they are not as far away as yours. It's not just the travel it's the organizing and need to play normally with them when you arrive. Grandchildren can be exhausting at the best of times. Make sure you pace yourself and have enough pred.

[Hidden]

Just come back from taking a friend across my city for a microwave and took the dogs..then had to call at the chemist and a sneaky m and s shop for tarka dahl. It doesnt seem much but the traffic was heavy from 12 being a Friday. I was getting well grumpy driving her home and it was like my bottom ribs were scraping on something inside as back in spasm. I just can't cope with heavy traffic and deciding which way I used to go to rat run was impossible to remember. 3plus years at 6mg.

[Enfin in reply to Hidden]

Sometimes I just want to stamp and shout ‘It’s not fair!’

[Hidden in reply to Enfin]

Do that....it helps for ten seconds...but ten seconds is ten seconds. ( ՞ਊ ՞）→

[Hidden in reply to Enfin]

And I have automatic that is light and easy to drive....

[PMRpro Ambassador in reply to Hidden]

Not any Friday - Frantic Friday. School's out ...

[Hidden in reply to PMRpro]

Oh god...I thought the bits outside schools were very busy.

[PMRpro Ambassador in reply to Hidden]

They're all parked on the motorway on their way on holiday now ...

[Hidden in reply to PMRpro]

Thank goodness I am not going down the M5.

[PMRpro Ambassador in reply to Hidden]

Or M anything else this weekend! We're coming over soon, OH has been frantically mapping destination so we never have to be on the road at weekends! And then he planned driving south from Scotland on BH Monday!!!

[Telian in reply to PMRpro]

Brave decision but why not!

[PMRpro Ambassador in reply to Telian]

I have put a stop to it!!!! He was oblivious - I remember such things, he doesn't ...

[Telian in reply to PMRpro]

Got to be realistic sometime. Men don't seem to think like us but when it goes wrong they can be the least tolerant

[Hidden in reply to PMRpro]

Yikes

[Telian]

Most definitely can’t remember anything short term Enfin. I’m on 4mg and it doesn’t improve for me. 5 years GCA/PMR. I would definitely go up a dose and stay there until you’ve been on your trip. As others have said you’re dose isn’t at the right level for your inflammation. Don’t stress about doing a continual taper and listen to your body first and foremost.

Getting across London is a killer for me - hope you can recoup on the train and that you’re getting picked up from the station at the other end!

First night it would be early to bed for me too - follow the little ‘uns bedtime to enable to to enjoy the next day!

Have a good trip.