We will be continuing our ‘Topic of the Month’ in February by discussing, ‘Brain Fog’
Brain fog is a symptom that many people with lupus experience which can have effects such as short-term memory loss and difficulty with speaking or writing.
We’d really love to hear if you have any tips for managing your brain fog. Maybe you have a great technique or piece of technology to help you remember things? You may have made lifestyle changes which have helped to limit the severity of this symptom? We would like to hear all of your tips, management techniques and experiences and we’ll compile them at the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk
I would list my tips and experiences if the fog would lift for me to remember them!
Seriously the all important pacing and resting the mind as well as the body helps me.The same as resting my legs when achy I find giving the same rest time for my mind vital to get through the day.
I list any concerns or thoughts so I don't have to worry about them.
Try to put the "spoon theory" to work on the mind as much as the body.You wouldnt run a marathon physically so dont try to think too hard for too long at a time either.
I have an calender with alarms for important dates.
Chemist orders prescriptions from Gp so less clutter in head or worry about forgetting I'll run out.
Paying bills by d/d is again less worry and mind clutter.
If none or little sleep take regular rests.
See the funny side of things as much as possible as a good chuckle can clear the foggy cobwebs away.
When the fog really descends just stop and relax.Don't try and fight it.As natural mist and fog it will clear in time.
Ok that's it for me.I am sure somebody intelligent will be along in minute or two to make more sense 8 )
Yes! All sage advice. I guess it is just a matter of getting around it, writing notes and when you have a break in the fog, set up quick ways of dealing with daily issues like direct debt. This year I've decided against having regular events, lunch with a particular friend every week, etc. I don't feel as claustrophobic.
Just as a sort of footnote to my reply as had someone say to me it makes them sad to have to list everything,
Listing of tasks and activities is a good thing.
1.It keeps the brain ,apparently there are lucky folk on here who have them 8 ),ticking over .
2.It stops you forgetting important ,appointments etc.,or even fun things fav tv programme or letting loved ones n kids know we are still there for them and appreciate them etc.
3.If you list even things like washing hair,making lunch etc you can then tick them off as done and at the end of the day see what you have actually achieved!
Which is great and can give you an uplift that you haven't done nothing all day which it can sometimes feel like when having given up work or household duties plus other stuff.It is really important to feel good about what we do rather than worry whether we haven't done something or can no longer do through no fault of our own .
The brain fog is a constant problem for me. I try not to worry to much as that only makes it worse. Stress has a major impact on brain fog. For me it's forgetting names of things. So describing them helps. It also helps to have prompts for words. I try to make it some thing I can visualise then at least I can explain what it is I need
It's very frustrating trying to get across what you need if you can't think of the word for something.
Laughter is brilliant, make a joke of it. Then you not only lighten the mood you also take away some of the stress
It's difficult for friends and family to understand why you can't remember something they have only just told you. Some are worried about dementure and think wrongly you are going down this rout. Checking things out with the relevant specialist helps then you can explain what is going on and so take a lot of the fear away
Thank you so much for sharing your experiences. It is interesting that you report stress as a big factor for your brain fog. Are there anythings in particular that stress you out and make your brain fog worse?
Brain fog can sometimes be linked to levels of lupus activity, though it is not fully understood why this happens. It can also be a symptom of depression or antiphospholipid syndrome (sticky blood). You can read more about this in our factsheet, 'LUPUS and the Brain' at lupusuk.org.uk/wp-content/u...
I think stress is an important t factor with Lupus Flares as well as the brain fog they go together. Christmas stresses me out so does going on holiday. The day to day stress is manageable but it's the extra stress on top that just tips me over the edge.
January seems to allways be very difficult, I am usually quite poorly for the whole of January.
I have Really bad headaches all the time it's like walking through treacle, my brain feels sticky,
I have read the fact sheet you talked about and even tried to increase the aspirin I take daily. I do have sticky blood but not bad enough to take anything other than the aspirin
I am going to talk to my specialist when I see him next month.
I had to stop fighting it. Like fatigue, I pace. At work and home I found I was used to storing everything in my brain. Why? Now I write things down as I remember them. Use Calender's, my phone, note pads, ( sometimes forget where I put them including my glasses) but it all helps. God bless spell check, if I can't remember a word now I start to type and up it comes. Magic!
People finishing words was the worst thing so I told them. And now after tests etc I know why, the stress is less,I can manage it. Bad days can be bad, so public speaking is out.
Strange how the brain works, I can forget general words and how to spell them, but words to songs or medical terms from work remain.
I still find that closing my eyes, fingers in ears, deep breaths shutting things out is the best way to calm and reboot.
Thank you for sharing your experiences and tips. Was it frustrating for you when people tried to finish your words for you? Were they understanding when you explained that you didn't like it?
Hi Paul, Yes it was frustrating. Obviously it is to do with their anxiety and people not wanting a silence or thinking they are helping. My husband sometimes still does it. He will list several words which he thinks are appropriate, which just muddles me more, then I lose track totally. Some understand but mainly I found myself withdrawing from conversations on those days. Its not ideal but I also find that If I try to force my brain it gets worse. So sometimes I accept that some conversations don't need me.
Thank you for elaborating. I think that it can be difficult for some people to understand this and they may just think they are helping. It will be useful for our article.
From my experience brain fog comes with dehydration due to many reasons - eating more than I need to, not eating food with enough nutrients, chemical toxicity including traffic fumes; lack of good quality sleep; lack of good quality exercise in the fresh air (not in a gym where oxygen can be short and no chance of increasing vitamin D levels; stress which dehydrates.
Brain fog like other unpleasant symptoms is our bodies' way of telling us it is in imbalance and we need to do something about it.
Dry food and food that dehydrates can also cause my brain fog, so I keep food moist.
I go for whole natural food with as few miles as possible and as few pesticides as possible, cooking from scratch and I use muscle testing to find out what my body needs at any one time of feeling foggy!
Sometimes it needs water, sometimes it is a particular food or fruit.
I do my best to get outside for at least an hour each day and away from traffic fumes and bugs!
When I need to move around and get my circulation moving even if only for a walk in the garden, I do it.
We are all different and it is difficult to tell someone else what they need to do to cure their brain fog, but as we get to know our bodies, which is what many of us have lost - the 'God-given connection', it becomes easier to know what we need when our brain fogs up.
I remember to think how lucky I am compared to so many and thank the universal energies for all their help.
I smile when it seems there is little to smile about because our bodies produce good endorphins when we smile.
Thank you for sharing your experiences Cann. Do you find that all of these changes to your diet and lifestyle have made a significant different to how frequently you experience brain fog and how severe it can be?
I am not saying I don't still suffer from brain fog at times because my body and most bodies are constantly under stress, but I make the connection with my body and do my best to find out what it is I need to do at that particular time.
Being on a bus or anywhere with many mobile phones in use can cause it, too, or in an area of phone masts because this dehydrates me.
I find once out of the bus or out of the strong EMF environment and walking quickly to discharge the electrical energy helps to disperse the fog.
I did find brain fog, for the first time rather frightening.!!I can't think straight,muddle everything up, forget what I was doing.Thought I was getting dementia.I think I have come to terms with it now.when it happens I just give into it,rest on the sofa,watch tv
Thank you for sharing. It's great that just switching off for a while helps you to manage your brain fog - sort of like resting and pacing to deal with physical fatigue.
When brain fog first hit me, I became really concerned I had dementia. I didn't have a diagnosis of lupus and only knew it was something dr house (house tv series) kept suggesting but it never was, lol.
I was frightened because I wrote long reports and letters to customers in my job and had 100% quality on my work. Suddenly my reports and letters didn't make sense and my grammar was atrocious. I made gravy with milk one day instead of instant coffee and I was forgetting everyday words. And whilst I laughed I was scared as I was only mid 30's.
Now I have my diagnosis I know what it is and I am less scared but I am still trying to find a way of coping. I write stuff down more now and set things as reminders in phone memory. But still find that I think I need to do something and then go to do it and I've forgotten.
I have taken to doing my food shopping online and adding stuff to the basket during the week. I was going to the shop to but a specific thing and I would spend a fortune and still forget it and then I would go back to get it and the same thing would happen.
I do try to rest more now as I know I get quite frustrated. I am a work in progress but I look forward to reading others experiences and tips for me to try.
I have found the whole thing quite frightening. I used to be a lawyer and remembering things and speaking were a very important part of my life. Even when I stopped working to look after my children, I could do 5 things at once and didn't forget anything. In the year before I found out what was wrong with me I kept having arguments with my husband (only little ones) because I completely forgot conversations....and refused to accept that I did....and I used to tell him the same thing more than once...but couldn't remember doing it. I thought there was something going really wrong with my brain. I was forgetting words and not able to get the right word out of my mouth. The only way I could explain the feeling, was the word 'fog'.
Now I can laugh at myself. Almost every time I leave a room to go and do something, I end up in another room, with no idea of what I came to do. It makes me smile. But, if I stand there for a few minutes and am very calm, I normally remember.
My best tip is to write everything you want/need to do down. Have a master list in a notebook and add to it and tick things off. That way, when you are feeling up to it you can get through a few 'jobs', but if you are not, they are still on your list for another day.
Thank you for sharing your experiences puffyface. It's good to hear that you are able to manage this symptom with a bit of a sense of humour and some patience. Are you still working?
Thank you Paul. No, I am not still working. It wouldn't be possible.
I hate how brain fog affects me. I forget things, cannot plan how I will get work done, feel overwhelmed by silly things like following a recipe, lose my train of thought, struggle to read books and even watch things on TV. I remember before I was diagnosed scaring myself while driving the car and finding it really difficult to concentrate on driving. Last year I completely forgot my PIN number at the bank - mortifying and quite awkward coming up to Christmas.
I have to use my diary, make lists, set alarms, leave post it notes everywhere. (I like post it notes. I stick them inside my planner and remove them as I complete each task and can see my progress through the day at work.)
I think I have improved slightly with treatment. I can now enjoy reading - something I used to love but just found frustrating for a while. A good walk can 'declutter' my head and make my thinking clearer, or just a cup of tea and a bit of a rest. If I am really struggling with a task I sometimes just have to put it to the side and deal with something less challenging.
Thank you for sharing your experiences and advice. It's good to hear that you feel your treatment has helped to improve your brain fog slightly. What treatment are you currently taking?
Honestly, just plaquenil for Lupus. Also levothyroxine (having an underactive thyroid doesn't help if it is not properly medicated), vitamin D and other medications for raynauds and sticky blood. I think having the disease under control is a huge help. Other lifestyle changes help - like proper rest and exercise. There are a lot of similarities between this issue and managing fatigue.
(Don't have lupus but suffer brain fog due to fentanyl induced hyperalgesia and a breakdown have probes with co ordination bones and arthritis ,thyroid as well skin and nerve pain etc at first after fentanyl was out brain and body would freeze all the time I m almost two years on .)
Suggestions for brain fog
When it happens and you completely shut down have some calm non stimulating space with little stimulus .
Keep warm.
Use alphabet to remember
Think laterally
Acceptance not complacency .
Routine
Activity and rest helps prevent incidence of brain freeze .
Being mindful ,simple focus on task at hand,
Using aid memoirs as other have stated ,
Keep things simple less achieves more.
Don't try and over multi task ( l used to fall over all the time if I tried to speak and walk).
Stand outside yourself mentally to be helpful and objective in your recovery .
Voice record stuff.
Find a way of dealing with how u feel about your condition so that u don't bottle frustration about brain freeze or condition ,dialogue and narrative is important drawing and painting it out helped me .I literally call absolute brain freeze the 'dopamine elephant 'and drew it also helped with return of fine motor skills.
Repetition practise helps in every way it starts a path that becomes instinctive and therefore less fatiguing ;its like neuro plasticity the response time can be brought back with time and practise just using other routes.
Short bursts of static exercise throughout day will improve function to brain and neuro pathways as the circulation is boosted and mood is affected.
Listening or prompting for memory gaps ex IMDb if u can't remember a film or using a dictionary or whatever .
Reeducate where stuff feels lost completely it's still there but needs repetive prompting .
Not getting annoyed just try and be positive .
If you are trying to work asolution or cannot piece together information rest on it ,often the answer takes time to order and respond and doesn't function like it used too the answers are still ther they are just delayed .
Maintaining social interaction so you don't feel a freak is important .
I write everything down, and also give information to my family so they are my back up. Always take someone with me if possible if I'm going somewhere that entails lots of concentration and information. I try to limit the length of time I spend doing anything, and the minute spelling mistakes creep in, I know it's time to stop. Spelling mistakes and the need to read something more than once are a good indicator that you need a break. Number 1 advice, don't be hard on yourself, it's a symptom of your illness, not your intelligence levels. I still struggle with this!!
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