Decision exhaustion and grit my teeth?: Making... - PMRGCAuk

PMRGCAuk

20,342 members38,113 posts

Decision exhaustion and grit my teeth?

Enfin profile image
27 Replies

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?

Written by
Enfin profile image
Enfin
To view profiles and participate in discussions please or .
27 Replies
SheffieldJane profile image
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 profile image
Enfin in reply to SheffieldJane

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

DorsetLady profile image
DorsetLadyPMRGCAuk 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 profile image
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 profile image
DorsetLadyPMRGCAuk 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 profile image
PMRproAmbassador 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 profile image
PMRproAmbassador

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 profile image
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 profile image
PMRproAmbassador in reply to Enfin

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

Enjoy though!

scats profile image
scats in reply to PMRpro

Me too!

Rugger profile image
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 profile image
Enfin in reply to Rugger

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

scats profile image
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.

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 profile image
Enfin in reply to

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

in reply to Enfin

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

in reply to Enfin

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

PMRpro profile image
PMRproAmbassador in reply to

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

in reply to PMRpro

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

PMRpro profile image
PMRproAmbassador in reply to

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

in reply to PMRpro

Thank goodness I am not going down the M5.

PMRpro profile image
PMRproAmbassador in reply to

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 profile image
Telian in reply to PMRpro

Brave decision but why not!

PMRpro profile image
PMRproAmbassador in reply to Telian

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

Telian profile image
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

in reply to PMRpro

Yikes

Telian profile image
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.

You may also like...

Shocked at the colour of my teeth

looked in the mirror all of my molars and pre molars seem to have blackened. I recently had a...

Now my teeth are falling out:)

bridge snapped!!! I was left without two front teeth:) cute if you are 8 horrendous if you are 52!...

Questioning my doctors decision that I’m in remission

again the results were immediate. No pain, no tiredness and back to normal again. Doctor still...

Overwhelming exhaustion

overwhelming and total exhaustion I find so hard. Today all I’ve done is a 10 min drive to a small...

Exhausted

so don’t know how long I can keep going as I’m exhausted all the time. Can anyone give any advise...