I just thought I’d have this on my page as ive been just awful with replying in general - but particularly on this forum! For that I apologise to anyone who messages and replies, i am so grateful to anyone who reaches out! I am doing my best! Unfortunately the brain fog gets so bad sometimes I literally lose weeks but I promise i will get to you as soon as i can!
On a side note - does anyone has any tips for brain fog/fatigue?
Hope you all have a good day.
smile your way through and pretend you haven't done or said something stupid.
Loool i guess it is a confidence thing
Oh Sandy1212 I can relate to the brain fog😖
I've just forgotten my home phone number! when I was asked again I gave my sisters no.🙄 Then I was asked for my mobile no & I had no idea as I never remember that either!! 😬
I am not sure of your age but if your brain fog is impeding your daily life it is time to talk to a doctor about taking a cognitive test and having brain scans. Please do not assume it is normal lupus for It could be a number of other things, some very serious and others very treatable.
I can relate very well. It would be helpful to know what meds you take and your age. I’m in my early 60s. Brain fog has been with me since my 30s. Had no name for it then.
Very odd is I have found from my neurologist a very simple remedy—ani histamine. Perhaps one of the medical
Folks on here can elaborate. I have no
Allergies.
I think it’s related to MCAS or something there about. Like inflammation of all immune cells including the allergy inducing ones. I too found great relief from antihistamines.
I am 24 and i am currently on prednisolone and azathioprine. Interesting antihistamine helped!
Oh wow that’s so useful to know! Could help a lot of people. What do you take? Just piriton or something? X
Sorry Melba. I missed your question. I take a first generation antihistamine
Called antivert or meclizine. Better known in USA as Dramamine. It is OTC.
But I’m prescribed it so save money. My neurologist says most people don’t respond to it as well as I have. It is a med commonly taken on cruises to avoid sea
Sickness. It is helpful for vertigo/ dizziness with antihistamine properties.
Lately I have been experimenting with xyzal and I find it to be very effective. The reason I am trying it is the antivert I believe was affecting my memory. But that’s my experience. Not everyone’s. And I know! Paradoxical that I originally
Took it for brain fog and then it turned on me😀
Some tips…..
Visual cues help as reminders because I forget things I’m suppose to do all the time.
Keep a good schedule - Google calendar is a life saver and you can sync your calendar with your family members.
Write things down. I use the notes function on my phone all the time and jot down things as soon as they pop up in my head. I am guaranteed to forget them otherwise.
Make to do lists. I hate these but they do help me keep on task.
I have word finding difficulties all the time. Just say I can’t find the word and use a substitute. I do this all the time. The more I search, the harder it is to find.
Give yourself grace and don’t overextend yourself which makes fatigue and brain fog worse. Check out spoon theory if you haven’t.
I think we are really good at compensating and probably have been for a long time so you have some built in habits already that you probably don’t notice. Sending healing vibes and hugs. ❤️xx
Those are very good tips. I’m old fashioned and like my written calendar and diary of what I did everyday. One thing that helps so much for me and maybe anyone outThere that loves words is assigning a word
For an action: for instance I’m always taking my glasses on and off and it drives me crazy when I waste spoons literally throwing sofa cushions to find them😀. Anyway I use the word Down in my head for anything I put down. To find it has become easy because as I visualize what I put down, I actually see
Where I put it down. I’ve created my own
Vocabulary I know it must sound funny but it’s so easy it works. Of course down is actually “down” but I have words I simply made up. Ok. I sound like a nutter!
Pseudo photographic memory or prompting. I do the same thing but opposite!!!! I keep mental notes of what I see when I’m talking about something. I associate that item with that thought and can literally roll back through a whole conversation based on what I saw during that idea. Sometimes I associate conversations with what I wore. It’s not crazy at all! It’s called compensating. We do it all the time and we don’t know it.
I hope this thread grows some more because I’d love to hear all the odd things people do to compensate and don’t even think about it.
🥳I love that there is an explanation. I wish the word weren’t compensation!
Sounds as though we are crippled and
Need help🤪
But we kind of do need help… It’s a conundrum. I find lupus peeps to be very independent and strong willed before they fall ill. Makes asking for help even more difficult. Almost like we literally work ourselves to death or into sickness.
Wow. That is so true and would need another thread. Thx for saying that😊
.....a very interesting theory about 'working ourselves to death' and one I've also pondered on.
😍😍😍
Haha. What happens if you don’t talk to anyone all day🤣
No interaction = perfect memory that day 😂
Thank you Jmiller! I think i do need to be more vigilant with my lists and sorts, i use outlook to try and book in things and i even have a mini whiteboard with the days on there. My problem is actually remembering to put things in! Your suggestions has been helpful! Wishing you the best❤️❤️
When I had a flare Day 9 onwards after my covid first covid jab, I lost track of days in my diary - one day I made entries on two pages, and it took a couple days to realise what had gone wrong. Also my spelling goes..
Oh gosh sorry to hear that! How are you feeling now?
Oh Sandy sorry you to are going through it .And posted a question I would have asked. I have just been diagnosed on Tuesday .But tbh I've had a lot of things going on regarding lupus for 18 mths .I couldn't get them to believe me .My GP thought I had Giant cell arteritis. Long story short .Ended up in hospital a few weeks ago I didn't know where I was .Then when I came back to normal .I thought dementia...and have had loss of power down one side on and off .But least it happened in hospital when my blood pressure went sky high and looks like a stroke .But it comes back to normal .So they saw it ! To see neurologist in 2 wks..But the brain fog is so hard to deal with .Did you have problems with your hair .? Mines is broken brittle and lost loads That has been going on for a while .So thank you for posting .This forum is a life line for me just now .So thank you all to at least make me feel I am not alone in all this .Kind Regards Miriam X
Hi miriam! First of all I’d like to welcome you to the forum! If you ever have questions or you just want to vent this can be the place for it if you feel comfortable to, everyone is so supportive and are here for you. I am so sorry that you have had to go through all of this for you to finally be believed and formally diagnosed, it is an unfortunate occurrence with many lupus patients. How are you feeling?
When i was first diagnosed I remember i was so lost sometimes but i tried to keep my brain focused. I actually found that playing brain games or just normal games helped come to think of it. As suggested above, lists, reminders, routines are all helpful. Im actually so glad to have made this post because at the minimum it’s showed i already do things to help but given more ideas as well! My brain fog does come and go so I do get breaks from it as well, this time around has just hit me hard and was unexpected !
I didn’t have any problems with my hair though, as you may already know all lupus patients are different but i do know that is a symptom of lupus and im sure there will be people who also have hair loss in the forum. If you feel ready to, make a post asking how they’ve dealt with it if that’s what youre looking for!
Hi Sandy many thanks for the welcome. XI have already had great advice and support on here and thank you for your tips. Will look to get Puzzle books .Sadly it seems many have gone through the same .
But yes I can see things will change in getting the help I need now
🤞.So I will start to get a handle on it .I was on the Giant cell arteritis forum before .Where got some great advice
They haven't ruled it completely out .Was supposed to get a biopsy for it but been on steriods would give a false reading .
This forum must be a life line to a lot of ppl .I am so very grateful already had great tips and advice .
So thank you to you and everyone. I don't feel so alone now .The fact that I live myself with no real support around.
has been hard .But now feel after reading ppls comments I can see a better road in front of me
Best wishes Miriam Xx
How about an MRI for everybody ? Some preventative medicine is pretty important - we all need our brains.
I’ve had a MRI before, they found no noticeable issues…they did say there was some minor deformity but im not sure if it is related…maybe ill ask them tomorrow at my appointment!
Sorry - I'm a bit deranged over lupus and Neuro issues right now. Grinding my own axe a bit - out of context.
I just think more attention generally needs to be given to it over the span of a lupus patients life - right from diagnosis. Its like brain fog is just brushed off as an acceptable side effect of just having lupus instead of some dedicated monitoring.
I hope you're appointment yeilds some good answers.
Oh yes it's awful. I actually forget an phone appointment with Renal Drs today. Lucky they left a voicemail saying kidneys ok & they said they'd make appointment for 3 months time. So embarrassed but so much happening today. I must start making lists or setting phone reminders !
Ah well im glad to hear it’s good news about your kidneys. Don’t be embarrassed, it was a honest accident! Reminders and lists can really be so helpful (provided you remember to make them lmao). So sorry you are suffering from long covid, wishing you some relief soon!
Ps I have Long Covid so at least I know why my brain is struggling
My little brain is having a nightmare!
Has anyone had treatment/discussion/diagnosis of brain involvement with lupus??
Our GP is out of their mind!!!!
ill health retirement
