The Topic of the Month for November is Forgetfulness (Brain Fog). Brain fog is a symptom that many lupus patients experience and can include short term memory loss and difficulty with speaking and writing.
We’d love to hear if you have any tips for coping with brain fog. These tips may be helpful ways to deal with the symptoms or perhaps ways you may have found to prevent them being so severe. Please comment below or email your tips to paul@lupusuk.org.uk
Paul, I use the following tips when I have brain fog particularly during a flare up:
1. Be honest to family/friends that know the situation so they are aware that I am not thinking as I would usually. They can usually tell themselves now but I don't feel so bad if I am upfront about it.
2. Write notes/lists.
3. I try to keep conversation a little more low key/shorter and try to contribute to talks/discussions by putting in little comments without rambling on and losing my thread of
conversation.
4. When brain fog is really bad it helps to go and sit in a quiet room just for 30 minutes and I find this calmness allows my mind to rest and my head not to feel so foggy.
5. If there are a lot of people in a room all talking across each other then this can be very difficult to concentrate. I try to ensure I sit near to whom I am talking to. This is often the hardest situation I find when I am having brain fog as it is so hard to concentrate.
6. Try to do relaxing quiet activities when my mind is like this to enable it to rest. Peace and quiet when possible and if able relaxing music can take my mind off the brain fog..
7. I try not to get frustrated when I feel I cannot participate in discussions as I normally would as I am learning that the brain fog will ease up and I try to just let it pass over like a wave. When it has lasted for weeks it is frustrating but it does ease.
Hope these ideas help.
That's very detailed. Thank you.
I use my phone to set reminders and make notes of things.
At work I use post-it notes .
I try to do things that need writing or thinking about earlier in the day as I find that my cogitive abilities get worse as the day goes on.
At work I try to take some time out at lunchtime and not have to try to keep up with understanding and interaction with people.
I wish that I could not be frustrated by the difficulties with remembering, thinking and speaking and writing but I do!
Will be interested in other people's tips.
For all important i make sure that i have a calendar that i can clearly write down appointments,,the direct debits from the bank etc..i also use notes,,id write a post it and blu tack it to the kitchen cupboard door that has the tea n coffee n,,so first thing in the morning i see the reminder!!Be great to see other peoples tips.
I have a couple of different pads and a diary. I write out important things I need to remember or do then highlight anything urgent. That way it jumps out at me. I also write down at night anything I may need to do the next day so I see it in the morning. I now try to remember to close windows and doors half an hour or so before going out. If I leave them to just before going out I can forget! I have also learnt never to make major decisions when I am foggy. When I forget what I am saying mid sentence I simply say to whoever I may be speaking to that I have forgotten. I also find a bit of tranquillity helps to clear the head and soothes the senses.
I have just set my diary up on my pc & phone so it links both together so whatever is on one is on the other. The same for my to do lists. I have also just put a journal on my phone so I can write into that. I also key frustrated and snappy especially when I am trying to explain something to the kids and I am saying it all wrong, my eldest understands that I can't help it, so we have a key word "potato wedges" so when I get frustrated he says it and we laugh.
I.am a new lupie and did't realise the fog was part of it, I thought it was delayed baby brain Hahah
Brain fog is AWFUL, frustrating and just darn right annoying. Can anyone give me tips for when I lose my train of thought in conversation? I tend to stumble over words, or forget what I was about to say next. Also I find it so hard to concentrate, especially on work, my mind wanders.
Looking forward to seeing others tips and so glad it's not just me whose brain is melting out of the.ir ears!
Also, do any of you know if the fog will ease as I progress with treatment, just started on Azathioprin and do any of you have hearing loss? I am finding this is making noisy situation more confusing too as I can't hear, so become even more confused ........ taxi to the body transplant clinic please !
I have struggled a lot with recall issues--mostly forgetting basic words, names. It has been so bad in the past I thought I had Alzheimer's disease. When I discussed it with my rheumatologist he didn't associate it with Lupus and instead sent me for an MRI. When that came back normal he said it was likely hormonal / menopause related. I'm relieved to hear I'm not alone with this symptom.
I cope by making lists, as suggested above, but as many of my issues are verbal, I also "work around" the word I can't say, restructuring my sentences real time to try to not get caught on words. It's challenging. I'd love to hear others' ideas.
I also would love to understand if there is any treatment for this. I'm on the standard lupus meds and they don't seem to help this aspect of the disease. I take Ginkgo Biloba, but I don't really know if that has an impact.
I tend 2 just ramble on like some mad, psychotic beast but 'Post It's' here, there, & everywhere helps as well as thinking out loud eg If I walk upstairs to get something I'll sing 2 myself saying 'Upstairs to do the (whatever it is)...' & just keep repeating it. I try not 2 get in2 too many conversations at these times & if some1 phones, I just tell them it's not a great time 2 call & would they mind leaving it a few days ;0)
Also, mental problems with SLE/APS r far more common than we r led 2 believe, even with clear MRI, CAT scans, EEG's etc although many specialists/Consultants etc will deny this ;0)
Just following up on my previous post, I have been out with my mum today and she said she had really noticed lately I stumble over words, so today we put an action plan in place, she kinda filled I the missions word, we ended up havi.ng a whole convo to the end without me missing a beat, she I interjected with wall, plaster and builders when I was .er erring 
obviously this won't work everyday but might help with those who u are close too and she even said I had a spring In my step and looked healthy for a change whoop whoop ggood day x
I gather that Prof Hughes is now recommending a 3-week trial of low molecular weight heparin injections for APS patients with brain fog. Maybe this should apply to Lupus too? Then if the heparin works, patients are advised to use either aspirin, or if necessary, warfarin.
I agree with everyone who has posted above: those are things I've been doing too for years, and they all help me keep calm & carry on when brain fog hits.
I'm now nearly 60, and it turns oit i've had sle all my life. I'm feeling strangely glad my brain fog really started to get bad in my late 30s, cause otherwise I think I'd have probably been told it was either hormones changing or old age coming on! As it was, back in my 30s, my version of brain fog was mixed up with vertigo: the wild world swinging around me 24/7 so I couldn't stand let alone walk unsupported. The key to coping with this combo of fog & vertigo was sleep, rest, learning not to worry (I was lucky: although my lupus wasn't diagnosed at that point, I had supportive family, friends and employer - I was off work for months: well, I was so foggy & dizzy I'd have been no good there) which was hard cause I was very scared by my symptoms and full of anxiety. But I did very slowly recover from the worst of the vertigo and i got used to minimising both the dizzyness and the fog with the help of loads of rest: this took years of going to bed really really early, almost as soon as I got home from work: rest was the main thing that helped
Since then I watch like a hawk for signs of brain fog and vertigo, doing my best to rest up even more the minute I realise I'm slipping more in that dizzy muddled direction. By the time I was 50 the tendency to slip into fog & vertigo had got so bad I had to start taking afternoon naps: proper ones of at least 1 hour, which i gradually realised meant early retirement: also really scary. But i started thinking of the rest as meditations, which helps me stay calm. I had learned TM way back as a young woman, and could see the connection between naps & meditation, for sure!, Now these afternoon naps can be 2 or even 3 hours: whatever I need. Again, my family and friends are very kind about this: often asking me "is it time for a nap?"
More recently I've found that a bit of caffeine can help a lot: just say 1 cup of strong Indian tea or good coffee mid morning to start the day: when my fog is often worst. I'd given caffeine up totally for over 10 years, but a lupus friend who is also a scientist and knows a lot about lupus & nervous system probs told me this sort of moderate use of caffeine is good in many cases. To my surprise, this really seems to help: I don't take the caffeine every day, just maybe 2 mornings a week....but I think it does give me a gentle boost, without keeping me from doing the resting i need in the afternoon and at night. Yes, I had originally given up caffeine partly cause I was way over doing coffee in the office and it was affecting my upper GI,, but also cause I had a tendency to broken sleep at night for many years due to aches & pains and the last thing i needed was caffeine keeping me awake. again, with age, i do increasingly better at talking myself into worrying less about waking up during the nighttime: I found this much harder when I was younger. When i was holding down a job and under work place pressure, anxiety during restless sleep was very tough on me. So I feel greatly for all you younger women and men coping with these pressures and strains.
So, I guess, for what it's worth, I'm adding this to what's been posted above:
Plenty of resting and sleeping, including meditation
A limited very moderate amount of caffeine midmorning
Take care all!
I am so glad I read this, I have been suffering with giddiness and feeling off balance for years! Have been to ENT had hearing tests etc. I was diagnosed with Lupus about a year ago after a couple of bouts of pleurisy and roughly 5 years of tests. The giddiness etc has just got worse, a spell of Labrinthitis over the summer has left me panicky about going out. I work part time and am off work AGAIN...it goes on. But see this post gave me heart as have not really seen any links between balance and Lupus...I get terrible brain fog now and can't cope with too many people, I just start to panic and it all gets worse. I am trying to find a way to manage my Lupus and this has made me feel less isolated. Thanks
hi,my first symptoms 16yrs ago were ,balance and dizzy spells ,so i was investigated for everything other than lupus,hence it took 16yrs to diagnose ,for me neurological symptoms are the biggest problem for me ,for a while i thought it must be M.S?my mum sufferd terrible M.S ,however as i have an array of other symptoms and a positive ANA lupus was diagnosed with overlap fibromyalgia,i walk off balance ,i feel off balance ,my speech goes haywire ,my writting goes haywire and i could continue,hope this helps?brave
Hello there jamg....(hope ok if i add to our exchanges here, paul, cause it's all on this monthly topic) Am vvv glad if my post has helped a bit. I feel as if I totally understand your anxiety. Your description is so like how I felt when coping with my first (and most extreme) flare of brain fog + vertigo in the mid 80s. Like you, I was diagnosed with labyrinthitis. Then the nhs put me through a lot of ENT tests before coming to an ultimate diagnosis of arthritis in cervical spine + benign non positional vertigo. I was told i'd be in a wheelchair by 50 (i was not) and put on anti sea sickness meds for months, which it turns out do actually make vertigo worse if taken too long continuously. Then I was finally told to wean myself off that Rx gradually, and rest. I saw a homeopath who gave me bryonia which I took daily for 3 years and for whatever reason, slowly the vertigo + brain fog let up enough very gradually so I could get back to work: first part time, then full time. My boss was v understanding really, but my job involved a lot of big vital deadlines, so was high pressure. I had to keep calm, carry on and zzzzzzz as much as poss to keep the brain fog + vertigo down to a level at which I could earn a living effectively. So, if I'm anything to go by: yes, we can do this! Now I wish i'd known i had lupus, and had this great lupus uk forum to go to for advice & solidarity. And all I really really want is to do anything i can to empower any of us who, like you jamg, are grappling with these big challenges.
I agree very much too with the posts here about the importance of diet: 10 years ago, well before my long standing lupus was diagnosed, I went onto an anti-inflammation diet. For the first 2 years, sticking to it strictly. I did feel immediately that this diet helped me to a more general sense of well being, and also could even have helped to reduce my predisposition to brain fog + vertigo. Also, my pain specialist (NHS) recommended to my gp that i take daily high dose ester C, omegas & vit D too.
I stick to all this lifestyle management and pacing myself even now i'm retired, cause I now understand something about my lupus, and about how greatly the benefits of living a v quiet life help me as an older woman: i accept that at nearly 60 my predisposition to brain fog + vertigo is even greater than ever....and that's ok, that's life with lupus. It is what it is. But boy am I still willing to over do things a wee bit now and then even though that means extra fog & dizziness until I've seriously rested up a bit afterwards! We've all got to seize the day now & then, right?
Take care all
Thank you for your comments...am still struggling with medication for Lupus, something is still clearly not OK...I can only do so little, eg have shower, get dressed, put away breakfast stuff and start to shake and wobble...so feel there is a long way to go. Coupled with giddiness etc feels like an uphill fight all the way...money is a huge worry...am in real fear of losing my job due to so much time off. I am a teacher so brain fog and job do not really mix.....
I stumble over words and in the middle of a conversation I simply cant recall what I was going to say, family and friends know and they accept it.
It gets very embarrassing at times though I find I get a bit panicky if I am speaking to soemone I dont know so well
Muddled is the word! It's scary, embarrassing and irritating to others!!
My grown-up children have learnt to finish my sentences and fill in the blanks when I suddenly stop mid sentence as cannot remember the correct word. We are very frank about it.
More embarrassing is the neighbour who insists that I must remember a conversation that I have no recollection of and try as hard as I can it has gone from my consciousness! The kids just accept I cannot remember and will go over it. I do try and write notes about anything I will need to refer to in the future......eg a tradesman ringing up regards a changed appt or an explanation of what is wrong..........trouble is it's even hard to remember to do that when at it's worst!!
I do all the memory aids inbetween and so enjoy it when I can have a conscious, active conversation......reminds me what I'm like normally!
So the only advice I've got to add is to really enjoy your 'normal' moments and use those to educate all your friends and acquaintances what it is like when you are foggy so they will know next time it's not your usual self!!
Solutions that work ... 4 of them!
I use the brain tonic Gotu Kola herb, known also as brain food!, and find it is really great for me. It means my brain functions better, is sharper in its thinking processes, memory better and fog is non existent these days. [If you are on medication do check with a trained herbalist or at lest check on drugsdigest.org before use.]
Taking Ester C, slow release vitamin C 3xdaliy helps clear the 'dull brain' particularly if I'ave eaten something not good for the brain.
Another herb withania, as a tonic, helps also by boosting brain function, being a immune modulator and gives greater energy.[also called ashwagandha].
Fish oil capsules make a noticeable difference when I take them, so increasing the # of times I eat oily fish in a week. increasing fresh greens helpful.
Somewhere I read that the brain uses 60% of the nutrition the we eat so it makes sense to eat well and feed our brains well. Ditto to diary and relaxation techniques, meditation and stress release techniques. Hope this helps some folk. You can find lots of info on line. There are solutions. All the best in finding yours.
ooooops just checked drugsdigest.org not active at this moment!!! some things move Quick!
I am so relieved to read all of these comments. I had noticed sudden memory loss and found myself going off balance and almost falling when I never used to. Thought I was devleoping dementia or something as I had not connected the lupus to it. At least I am lucky in that it is not something new, so thanks a lot to everyone.
I have bouts of dreadful memory loss, when I cant even remember the name of my niece, or my colleague sat next to me. People think that I am kidding and I get quite upset by it.
It is so frequent now that I start a conversation and cant remember half way through what I was talking about, it only takes a momentary distraction and that's it, gone!
Bizarrely I work in an office where number plates are important, and believe it or not, I can often remember them from weeks, sometimes months before..
I too spoke to my consultant/doctor and both advised that it was more likely stress then a symptom of Lupus. I very rarely maintain stress, I get stressed as things happen (usually the kids making us all late!) and then I've forgotten what it was I was stressed about in the first place! lol
This is one of my symptoms. Not been diagnosed as yet but I am definitely getting the feeling Drs are on the right track.
I'm getting an Amazon Echo so I don't have to remember to write it down. By the time I get to writing my reminder I've forgotten!
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