"Lupus fog. " How does it manifest? What is the d... - LUPUS UK


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"Lupus fog. " How does it manifest? What is the definition?

Poppyfields65 profile image
10 Replies

There are many posts about memory and Lupus fog particularly with people explaining how they forget things, people's names, words etc. I'm wondering if there is a broader scope to the memory problems associated with lupus and connective tissue disease generally? I've listed a few of my problems below that I've had on and off mildly since the onset of other symptoms in 2015. Recently they have returned much worse and at times are quite distressing both for me and people around me.

I've listed a few to see if you guys can relate to them.

1. Mixing spoken words up in sentences to give a different meaning but in your head you have it all the correct way round.

2. Repeating the same question several times to someone during the day.

3. Telling someone the same thing several times in the same day.

4. Saying or writing a wrong number but in your head you have said it correctly.

5. Not understanding what someone is saying to you. (Simple things.)

6. Having a conversation with someone about something important and 15 mins later starting the same conversation again and not believing the other person that you've already had it. Then a while later remembering it.

I mentioned this at my last gp appointment about something else, she did the basic memory test and sent me for bloods and an ECG and she's then referring me to the memory clinic, I was a little alarmed on the walk home...

Could this be Lupus fog?

People that have Lupus fog, do the symptoms come and go like all the other symptoms?

10 Replies

Hi there. I don’t have any answers really but it seems likely to me that the severe fatigue associated with all autoimmune diseases will impact on our memory and on our ability to process ideas well.

I am really only just starting to acknowledge this aspect of my autoimmunity, having previously always assumed that I didn’t suffer from this brain fog thing at all.

Now I’d say that I definitely do but in me it manifests in being a bit of a manic rambler - both in written form, at work and socially.

I’m definitely getting worse but haven’t broached it with any doctor yet because I fear this might be another excuse to leave me off all disease modifying treatments and dismiss lots of my symptoms as “of the mind”. I think in my case it’s of the mind and body due to high levels of systemic inflammation.

I’m definitely calmer and sharper witted when my immune system is being suppressed appropriately. I don’t know if brain fog and inflammatory fatigue are actually one and the same - but it’s my hunch that they are.

PMRpro profile image

It isn't just lupus or CTD - it manifests to some extent in many autoimmune disorders and yes, with some or all of the things you list plus other things. Even if the memory clinic only agrees on the reason - you have to remember that for your GP it must be a concern if they haven't met other a/i patients with similar problems - they should be able to give you some pointers on how to manage it better and help with day to day things that are impacted. Though you don't mention any inability to function.

Serser profile image

Hi ya Mickaela,

I have Lupus (and brain fog, unfortunately) and I am also a memory service nurse.

Your GP has done the right thing referring you to the memory service for an assessment with the symptoms you describe. They need to check your blood for signs such as low vitamin B12 levels which could impact memory as well as thyroid levels and possible signs of infection - all of which can impact memory, but these can be corrected. There are many other things they look for too - just to check and get a good baseline.

The ECG is for the Doctor, just in case memory medication is prescribed in the future - they have to check your heart is functioning properly and that your pulse rate is over 60bpm, ideally over 70 - this is also a requirement when considering memory mediation as it can lower the pulse rate in some individuals so not good for people with existing heart conditions.

The memory service should offer you a memory assessment which will involve a memory test as well as a discussion around the problem, physical health, mental health etc - they'll also look at possible alternative causes - be sure to mention your Lupus. And may ask for a CT scan to be completed. It's a load of detective work to rule out possible causes for your memory problems basically.

Think of it more as a precautionary measure by your GP - he/she has done the right thing.

Regarding the brain fog - I think it's different for everyone - I personally feel periods of vagueness, my functioning almost compares to someone who is drunk if that makes any sense - I'm not swaying all over the place generally (though in a really bad flare I can feel this way), I can struggle to comprehend basics, but I am fully aware of it which is frustrating!! I feel almost 'otherworldly' and I can muddle my sentences (and struggle to correct myself even though I know what I've said is incorrect), e.g earlier today at work my mum had made some fruit bread to share at work and I said: "It looks better than it tastes", when actually I meant to say "It tastes better than it looks". I knew instantly that what I'd said was wrong, but wasn't able to get my brain functioning well enough to correct myself - my colleagues did that for me!! Just in case anyone thinks I'm being mean about my mum's bread - I'm not - it was delicious but it turned into a bit of a monster in her oven, hence it's problem with looks!!

It is really frustrating!

I hope this reassures you a little bit Mickaela.

Take care,

Ser xx

Poppyfields65 profile image

Thank you so much for your replies. Very helpful and it is reassuring.

I don't have any in ability to function btw. I just seem to be worse with all of this at the moment to the point that my husband and son have made comments.

I've had the bloods done, ECG next week and then I guess she will make the referral to the memory clinic.

Serser thanks for the insight. Very useful to know what may happen.

jimbo1605 profile image

Hi, My wife has brain fog which inhibits her from organising, communicating and thinking. After extensive tests she has been diagnosed with sticky blood. After taking asprin low dose it improves things considerably. So I suggest if you get your Antiphosolipid Ab tested and work from there. Good luck.

Poppyfields65 profile image

Thanks. I'll suggest it to my GP. I know it was tested in 2017 and was ok but I guess things can change.

Kerrclan profile image

Hi Mickyaela

I hope it’s reassuring to you that so many of us experience similar symptoms.

I experience vagueness, headaches, feeling of loss of reality, getting easily muddled. I always have an awareness of my difficulties and attempt to correct my errors. Sometimes I try to say a word and after a few attempts I describe the item like colour, function etc. It is so frustrating and I find my symptoms much worse with my malar rash or when I overheat or need to multitask.

I had a brain scan two years ago to rule out any other cause which was ok.

I can also forget passwords & surnames of people I have worked with for twenty years.

My solutions are helpful to organise my thoughts & tasks. I have a notice board in my kitchen to write daily reminders. As backup I have a written calendar and digital calendar on my phone with notifications & alarms for important appointments & tasks. I also keep a notebook beside me to write down important information & keep another in my bag if I am out & about. I now focus on my lists & notes. Of course it doesn’t stop or help with everything. My mind wanders as I’m talking or typing even.

I also enjoy doing a few small puzzles every day like sudoku but crosswords frustrate me as I can’t remember words for some reason. My greatest achievement some days is helping my ten year old with her homework.

Try not to worry. Hope your tests are ok & reassures that unfortunately a lot of patients experience similar to you.

Take care Kerrclan

Niccigrace profile image

Hi, I also have problems with my memory. Things like recalling my telephone number or address. When I am working and for example invoicing I will check the document about 10 times because I can’t remember if I have looked and done everything so I have come up with a solution. When I have looked at something and dealt with it, I highlight light it so I can see instantly that I have checked that bit and it’s done. I am known at work as the highlighting queen. 😂

Paul_Howard profile image

Hi Poppyfields65 ,

We have an article on our website about brain fog which has lots of information and advice that may be of interest to you - lupusuk.org.uk/coping-with-...

Poppyfields65 profile image

Thank you Paul.

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