Brain fog: I think it's going to be one of those... - PMRGCAuk

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Brain fog: I think it's going to be one of those days...

JanetRosslyn profile image
21 Replies

My husband often mislays his mobile phone indoors, and the simplest way to find it is to give it a ring. Simple. Works every time. However... this morning at breakfast he asked me if I'd noticed where he'd put his glasses, and I said not to worry I'd give them a ring. It took me a few moments to work out why he started laughing.

It gets worse. After breakfast we cleared the table and when I opened the cupboard where we keep the cereal and canned foods I came face-to-face with a large onion sitting happily on top of a tin of tomatoes! How on earth....? And how did I not see it when I took the cereal boxes OUT of the cupboard? (All other onions were in the rightful place in the vegetable rack.)

Looks like I'm in for a fun day!

Seriously though, it's a good job I'm signed off work (in the Criminal Justice System) or there could be serious consequences!

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JanetRosslyn profile image
JanetRosslyn
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21 Replies
polkadotcom profile image
polkadotcom

Thanks for the Monday morning laugh, Janet. We all know what brain fog can do, but this is serious stuff!

lesley2015 profile image
lesley2015

This made me chuckle so similar to me ...... My husband said only last night - not to worry, the time to start worrying is when your are off your steroids and feeling well........ lets hope normal brain returns.

I am also signed off work, I managed four vet practices..... mmmmmmmm

Have a fun day

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to lesley2015

Pray tell.....what's a normal brain?

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

I don't know - don't think I have ever had one...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Snap!

lesley2015 profile image
lesley2015 in reply to DorsetLady

Not sure I remember ??

bunnymom profile image
bunnymom

I went to the grocery y store to buy meat on sale only to come home to find a freezer full of meat. Where did it all come from and why did I not notice? A friend made a remark about someone s brain being on steroids like it was a superpower and I laughed and said mine is and it sure isn't like that at all! And I still work everyday! Yikes.

Love the laugh I got from your fog brain.

I only buy ice cream rarely due to my weight gain ....anyway I was going nuts looking for it the night I bought it. Only to find it in frig all melted.. stuck it back in freezer only to find out it doesn't refreeze well..

life can be so fun.

First posting for me, but I have learned a lot from the comments here. Many Thanks. I've been on Pred now for nearly 2 years for PMR, originally misdiagnosed (you've all been there), and I am slowly tapering. Started on 40, now on 6 and hoping to get off using your brilliant DSNS method. But my question is not so much about brain fog as headaches. How many of you get them? It's not every day, but I wake up with them and sometimes they are really bad. (I have had MRI scan on cranium but there was a brain there! Nothing wrong apparently) Hey Ho! Chin up! Happy New Year.

PMRpro profile image
PMRproAmbassador in reply to

Pred itself can cause headaches. I'm assuming they've ruled out vasculitis-type headache? But that would be more consistent I think.

in reply to PMRpro

Not vasculitis but suspected nasty causing hearing loss, hence MRI. Also have tinnitus and it never stops. Thanks for everybody here for such good advice.

PMRpro profile image
PMRproAmbassador in reply to

Vasculitis (including GCA) can lead to hearing loss and tinnitus.

I had tinnitus in the early days of PMR but it departed eventually once I was on pred - mercifully it wasn't permanent because what I had was bad enough!

in reply to PMRpro

Fortunately for me, I was eventually passed to QEH Birmingham, and they ruled out vasculitis, and GCA thankfully, and I had a firm diagnosis after first consultation. They introduced me to the concept of 'Tapering' instead of 'Reducing', which had led to complete relapse twice before I got to QEH. Starting next week, going to try DSNS 6-5mg, to see how I get on. Thanks for your very thoughtful comments on this site.

PMRpro profile image
PMRproAmbassador in reply to

How did they define the difference? That may be the word to use for the recalcitrants...

in reply to PMRpro

They seemed to understand that reducing is 5mg or 2.5 or 1, but tapering is 10%. Hence reducing from 5 to 4, only 1mg is a 20% drop, but tapering would mean say 1/2mg or 10%. It's a crucial difference, which is why I am so keen to try the DSNS method. I am really finding it hard to get below 6, I was on 5 but got a cold, which was awful, back to 7, for three weeks, now on 6 for three weeks, and it is a struggle.

Weight gain too was a problem with Pred, but with discipline, I have managed to control carbs, walk every day 3-4 miles to stay fit, and hence lost about 40 pounds, with more to go yet. That's why I need to get off Pred, it's a wonder drug (rocket fuel for old men!), but brings enormous weight gain if you are not careful from the beginning.

That's what is missing from the first prescription for Pred. 'Watch your carbs', at 40mg you feel so much better, you don't realise that you'll gain 20 pounds before you know it!

PMRpro profile image
PMRproAmbassador in reply to

It IS crucial difference, you are so right, But don't be misled - yes, we all want to get off pred but as long as the underlying autoimmune cause of the PMR symptoms is active you will need it if you want to not be in pain and remain mobile. However slowly you taper, unless you are very lucky you will come up against a point you cannot get below: the lowest dose that manages the symptoms. By doing it the DSANS way that is likely to be much lower than if you go at it like a bull in a china shop. Some people ARE able to get to zero pred with only a couple of false starts but by no means all and you cannot tell which you are going to be in advance.

And yes - like the slow tapering, low carbs is also a good way to go and if I had a £1 for every post I had written about either on 3 different forums I'd head into the sunset...

trish29 profile image
trish29 in reply to

Hello PontesburySapper..sorry to read in your post that you get headaches..i used to be the same but i have been having Bowen Therapy for about 18months now and it is very noticible that the morning headaches have gone..also it has helped my lower spine . The Therapy to the head is so relaxing .i cant wait for my treatment this Thursday.. Best wishes trish29

in reply to trish29

Thanks for the advice, just might give that a try.

trish29 profile image
trish29 in reply to

Hi again PontesburySapper..it might not work straight away ,i seemed to find benefit between 3 to 6 weeks but we are all different ,i have tried other things ie ultrasound ,strapping .Dry needle treatment ,but i always go back to my Bowen Therapy..trish29

Annodomini profile image
Annodomini

Lin-calf, don't you know that the only thing to do with melted ice cream is....er.....drink it? Take that as a confession! My brain fog - if it isn't just my usual absent-mindedness - has caused me to lose track of a gift card destined for my younger son. I bought two and one has already been posted to his partner. I have been through the recycling bin (eugh) to see if it's among the Christmas cards and it isn't. My only hope is that I managed to put them both in with his partner's card. When she opens it tomorrow, we will know for better or for worse.

PMRpro profile image
PMRproAmbassador in reply to Annodomini

Yup - with annodomini on that! The trouble with melted icecream is it has lost its air. If you want it to turn back to something even slightly resembling what it once was, you need to churn it to incorporate the light stuff!

I had an American friend who used to microwave her icecream...

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