Brain fog & fatigue returns

[Naim1]

Towards end of 2024 and after significant lowering & raising Pred through out, inflammation came back in my shoulders & neck.

I was constantly fatigued & had brain fog.

I was also on a antidepressant prescribed as an ' anti inflammatory'. I had been on that for a number of months.

I saw Prof Hughes in December 2024.

On recommendation I raised my Pred back up to 15mg and was advised to reduce & stop the anti depressant meds.

Within a couple of weeks I felt much better again.

Pains stopped, brain fog disappeared and fatigue improved but was activity related.

From Mid January 2025 I started to lower the Pred as recommended slowly. By the time I hit 12.5 mg in early March, pain & niggles came back in my shoulders & neck. Fatigue came back & brain fog returned.

I spoke again with Prof Hughes & was advised to go back up to 14mg and stay on that with a view being on 13mg by mid to late summer 2025. ( between 13-14mg seems to be my level to keep the inflammation in check).

However my fatigue & brain fog have returned and just will not go.

It seems as if I can get the inflammation under control but at a cost. The pay back is the brain fog.

I understand fatigue is just part of PMR.

Is the brain fog now just part of my symptoms & Pred side effect ?

Has anyone else suffered the same?

Thanks.

[DorsetLady PMRGCAuk volunteer]

Brain fog is well known with virtually all autoimmune diseases - this is from LUPUS charity, but it applies to most diseases-

lupus.org/resources/lupus-a...

And this from a post on here -

healthunlocked.com/pmrgcauk....

[Naim1 in reply to DorsetLady]

Thanks 🙏

[AncientAunt]

Yes, I have consistently suffered from Brain Fog throughout. My memory has become really bad. My husband waits until the afternoon to discuss important issues as he knows I’m worse in the mornings. I just can’t get my brain into gear.

I’m now down to 11.25mg from 20mg but the poor mental clarity and fatigue have always been there to some degree.

You mention that your fatigue is activity related and I agree. My fatigue comes in waves; I think it depends on how much I try to get chores done, how well I sleep and how far I push myself to complete tasks. I can get exhausted just having a shower, so then I need to rest!

I think some of it is down to PMR and some to withdrawal symptoms of reducing PRED.

It will be interesting to hear the views from others.

All the best,

[Naim1 in reply to AncientAunt]

Many thanks.

I can relate to everything you have said.

Just when I think I've turned a corner 🥊in the face!

I'm struggling with multi tasking again. Just trying to make a meal can be a nightmare.

My brain goes into limp mode and just shuts down. I find it difficult to communicate and just can't remember words.

I'm again finding it difficult to hold a job down.

The fatigue & fog will just appear from the bushes & mug me. 😩

[Obscureclouds]

I am similar to Ancient Aunt in that I do get waves of tiredness though nothing like the severe fatigue which is one of the main symptoms of my LVV ( now controlled by Pred ). If I've had days with long walks, pushing myself a bit too much to get things done etc. then I have a couple of days of being more tired so need to take it easy. I'm on 10mg Pred now and would also say that fatigue is probably down to my LVV telling me that I've overdone it especially as the Pred is reducing. Apart from general memory lapses (put down to age) I hadn't really thought about brain fog but I would say over the last month or so I have noticed these lapses getting more regular - like why I am trying to put dirty dishes in the fridge instead of the dishwasher? I was also quite embarrassed a couple of weeks ago when we met up with people we hadn't seen for a while where I kept forgetting words, names of people and places. Sometimes although I am hearing what my husband says it's as if I can't quite process it into something meaningful and have to ask him to repeat it so he thinks I haven't been listening. I do find it frustrating but am hoping it is a temporary situation.

[Chiavenna in reply to Obscureclouds]

I’m having the same issues, except I’m really NOT listening when my husband talks to me.. I am so preoccupied trying to keep things organized. I am not OCD by any means, I worry about trying to get everything done and stay healthy. He gets very frustrated with me

[Obscureclouds in reply to Chiavenna]

Oh dear - I’m sure like my husband he understands how difficult it is for us at times -sadly doesn’t stop them getting frustrated though 🤪

[Gc2596 in reply to Obscureclouds]

Think my son does too! I've definitely noticed, just this last few weeks, I'm 'going off the boil'. At 'our age' we'd generally laugh at doing silly things/forgetfulness knowing others experiencing the same. However, it's worrying the extent happening but yes, I'm putting down to Pred in the hope will pass.

[PMRpro Ambassador in reply to Gc2596]

If you are worried, speak to your GP, They can do a simple screening test to see if you are right to be concerned.

[Gc2596 in reply to Gc2596]

At the moment feeling more frustrated than overly concerned but will keep a conversation with GP in mind, thank you.

[PMRpro Ambassador]

Fatigue and brain fog can be inextricably linked - so while many consider the pacing aspect of autoimmune disease to be relating to PHYSICAL ability, it can also be crucial in the context of MENTAL sharpness as well.

There are a few links about pacing and living with a/i illness from various sources here

healthunlocked.com/pmrgcauk......

It features in DL's welcome post but it is always of value to revisit it at intervals because fatigue is a persistent factor in PMR.

[Naim1 in reply to PMRpro]

Wise words.

I have come to realise they do indeed come hand in hand.

Having been 'cognitively alert' in general all my life, it comes as a shock to feel punch drunk for most of the day. It is even more confusing when the fog cleared for a number of weeks at the beginning of the year.

Trying to explain to family, friends & employer is very difficult when they have never experienced it.

They believe ' being a bit tired' is normal, however trying to explain the situation when you are puddled, trying to find words & formulate a sentence is in itself draining, frustrating & upsetting.

[PMRpro Ambassador in reply to Naim1]

Searching for "difference between fatigue and tiredness" does bring up a load of articles that seek to differentiate between the two - they might help explain?

betterhealth.vic.gov.au/hea...

unitypoint.org/news-and-art...

[PMRpro Ambassador in reply to PMRpro]

PS, piglette often says she couldn't even be bothered to scratch her nose with adrenal insufficiency fatigue, never mind operate the TV remote control!!

[Naim1 in reply to PMRpro]

🤭..... I know the feeling!

[Naim1 in reply to PMRpro]

Many thanks.

[Body_bonkers]

I know exactly what you mean Nairn1. Steroids have helped massively with pain and stiffness but my brain function has deteriorated and fatigue takes it to another level. I’m on waiting list for full cognitive assessent but have little hope anything can be done about it. I’ve heard some say it took couple of years after stopping steroids for brain function to return. Being so young makes this particularly distressing.

[Naim1 in reply to Body_bonkers]

If it's any help, I was diagnosed at 53, I struggled for months before that with not a clue what was happening.

I'm now 55 and I'm Male.

I did not fit the profile at all for PMR but my symptoms did.

Like all the ambassadors say..." Someone needs to tell the PMR that!"

This help group is a huge help.

It makes me realise I'm not alone and others have similar or same issues & symptoms.

I wish you well. 🙏🙏

[Body_bonkers in reply to Naim1]

Thanks Naim1. We’re lucky to get diagnosed so early compared to others and a large part of this is due to this wonderful forum. I had ‘atypical PMR’ diagnosis owing to age and normal bloodwork but know this is actually not unusual. Same with cognitive function - my rheumatologist said there is no association with PMR so handed over research that PMRpro linked me which showed c.70% of us are cognitively impaired with younger participants most affected ! Antidepressants were pushed at me too as muscle relaxer so interested to hear your experience.

Wishing you all the best

[Naim1 in reply to Body_bonkers]

Had a terrible time on antidepressant's....went through 3 different lots....all made me worse....side effects were terrible. All made me feel tranquilized.

One lot sent me to sleep within an hour of taking.😩

Rheumatologist said " what the hell have you been prescribed those for... NO NO NO.....STOP!"

That says it all!

[PMRpro Ambassador in reply to Naim1]

What were you given? A couple of medications that were originally used as antidepressants are now used in different doses for pain management, especially when it is nerve pain. They are also suitable for helping sleep problems. I don't know why, but some doctors think they should be useful in PMR even though it isn't nerve pain. They are also used in fibromyalgia - so maybe the doctors just don't know the difference!

[Naim1 in reply to PMRpro]

I did say when prescribed them....WHY? 🤪🤪 but yet again you are obliged to 'go with advice'....if you don't anyone that has influence on your life takes it that " you refused medical advice".

First batch - Amitriptyline

Sent me loopy...was completely spaced out on them

Second batch - Duloxetine

Was tranquilised and asleep for 2+ hours within 30 mins of taking everday.

Third batch- escitalopram

Made me spaced out.

Dreadful....all of them.

[PMRpro Ambassador in reply to Naim1]

All useless for PMR. And they are implying it is "all in your head". Which it isn't.

[Body_bonkers in reply to Naim1]

Sorry to hear that. I was put on SSRI/NSRI in my younger days - did not work and made me feel awfull too hence reluctance to try again