View Full Version : Lupus and memory problems?
08-04-2007, 02:11 AM
I was wondering if any of you feel like since your lupus diagnosis you are not able to remember recent activities/conversations as easily?
Are any of the lupus medications known to cause memory problems? Or is it the lupus in general? Should I be concerned?
It has been a while now and I'm beginning to get frustrated about it. Sometimes I can't remember events that are one or two days old!! Even when I sat exams the past year, I struggled a bit to remember the material, which isn't like me at all.
Any input on that will be appreciated. Thanks!!
08-04-2007, 05:53 AM
Yes, all the time. With conversations, events, streets, names, spelling of words, grammar, location of items, messages I posted and read and etc. Maddening isn't. I never had this problem. In fact, I felt I had like a photographic memory.
In the beginning I really struggled with this loss to the point of being upset. But today, I shrug it off, blame Lupus and say it will come to me when it does. It helps keep the stress at bay and too, I find when I don't fret over it, the recalling comes faster.
I asked my rheumatologist about this and he said it wasn't Lupus related. I have SLE and Sjogrens Syndrome. He never gave another possibility and well, I forgot to ask.
From my reads, there is such a think as Lupus Fog...the inability to concentrate. And from others' experiences, forgetting is a symptom of Lupus. I do know it is real regardless of what my doctor said.
Sometimes I wonder like you, is it the medicine that contributes to it too? Especially the prescriptions for pain and anxiety. I believe anti-depressants can do that also. I dose with Plaquenil, Ultracet (Tramadol), Requib, Xanax and spray my mouth with Aquoral.
What was the craziest, I could not remember my rheumatologist's name, what is office looked like, where it was. I had been there twice before. I panicked. I looked in the yellow pages for a familiar name. They all seemed foreign. Did an Internet search. Nothing. Waited a few days, still couldn't recall then it dawn on me, his name is on my prescription bottle. What a relief for me.
That was the event I told my doctor of when he said it wasn't Lupus related.
My aide to help with my memory is write it down, unfortunately I didn't write my doctors appointment that time. Use Post'ems. Lots of them. Buy by the bulk.
08-04-2007, 06:22 AM
Oh boy do I understand lupus fog!
There's literature out there about it....but I can't tell you exactly where. Maybe Saysusie will help on that one!
The memory tricks Oluwa suggests help - I also keep a daily log at work, so I can look back and remember what happened at meetings, who I talked to, etc.
Hugs dear, it isn't you, it's our friend lupie!
08-04-2007, 01:45 PM
Thank you so much for the useful tips! And for making me feel better:)
08-04-2007, 05:17 PM
I had issues with lupus fog too -- which was hard for someone with a formerly photographic memories and a great ability focus.
They put me on an ADD medication, Concerta, that seems to help with the problem.
I still have holes -- not so much with the really recent stuff -- but with bits of the older stuff -- almost like you hear about with substance abusers (I'm not one - never did drugs, rarely drank) who have black outs.
I'm not sure that the meds are really helping there though...
08-05-2007, 04:47 AM
Hoooo boy...do I use Post It notes!!! I should own stock in 3M! (Hey, did you know they were invented in Minnesota?...there's something I remember!) I have notes on my 'frig; notes on my computer; the dash of my car - and I leave myself voice messages (both at home and work). I even send myself email - from my work account to my home account and back. Lists, lists, lists. It's just the way it has to be now - not a bad way to live - just a little annoying is all.
08-05-2007, 07:16 PM
my stepmom has lupus fog. Her difficulty seems to be with long term memory so we usually found it helpful to break out the photo album orfamily videos. It not only helped her remember but also made reminisent and very happy so it served two purposes!!! and we all enjoyed it
08-05-2007, 07:32 PM
Brain Fog is real... as you can see from the number of responses. My doc, who otherwise is really wonderful, does not think it is lupus related. For those of us who get it... who cares exactly how or why, it's a pain in the neck.. and even dangerous. Did I take my meds? I've counted pills plenty of times. I have a very specific routine now to help. It's also embarrasing for me at work. I'm a manager, leading meetings, projects, coaching employees and have always relied on my total recall memory... not able to anymore. I have to write everything down. Luckily, I've been able to wing it when I lose it in the meetings, or forget a name, or forget where I'm going, or even where my desk is. The worse is driving and not remembering where or what I'm doing. Luckily it's not an all the time thing. Mine comes during excessive fatigue, and is usually my first sign that I need to just go home and sleep for a few days.
Good luck, and as with all of the symptoms, remember it can come and go.
08-06-2007, 11:03 AM
I used to have the most problems while on high doses of prednisone. I could not remember full conversations. I was at my sickest then, so it's hard to know if it was just Lupus or the meds. It was very frustrating.
08-06-2007, 12:17 PM
OH MY GOD......CALL ME CRAZY, BUT I FINALLY FEEL LIKE I'M IN THE RIGHT PLACE AT THE RIGHT TIME...FOR ONCE !!
Like most of you, I suffer from short-term memory loss and I too have struggled with it....even more, so do my employers, friends and family!!
I had always been known for my incredible memory. I could recall in an instant conversations, what people looked like, etc - and those days are gone. I believe we all not only worry about "what's going on with me", but it's scary to realize what's happening and you can't stop it. I know that's the way I feel.
I've just started taking Gingko Biloba, and hopefully that will help. My sister swears by it, and I finally received an okay from my doctor. So I'll keep you posted.
Contrary to what doctors say, "brain fog", "short term memory loss" is prevalent with a huge amount of lupus sufferers. It's so discouraging when your doctor discounts your concerns without acknowledging that these are very real symptoms that need to be investigated.
So my little two cents worth is to follow all the good advice you've already received. I too have to write down EVERYTHING, I think, do and say; seriously. I has made me cry to know that I'm reduced to having to write down even the simplest of tasks.
Hang in there, you're not alone! You're in good company with all of these incredibly supportive comrades. Keep positive, keep hopeful and know that you will ALWAYS have a shoulder and a heart here to listen and to help.
Take care & Much love,
09-02-2007, 07:18 PM
I just had to jump in on this memory thing. I have not been diagnosed yet. My RD suspects either Lupus, RA or both. My ANA was positive 1:80 2 months ago.
Anyway..my thought is this. I belong to another forum also that is pretty well focused on RA. I have a ton of RA symptoms. It also talks about RA brain. It is described EXACTLY the same as Lupus fog. So..even tho the dr's don't want to see it, I really think at this point, that maybe it's not a Lupus, or RA symptom, but is an Autoimmune Disease symptom in general!
What do you all think of that? I really don't care what the dr's say, I know for a fact that 2 years ago, I had a fantastic memory. Photogenic. My husband relied on it alot! I was an excellent speller. Now, I have all I can do to remember my dr's name. It took me 15 mins to come up with my GP's name when the RD asked me for it.
I absolutely hate it, but nothing I can do.
09-03-2007, 02:15 PM
Absolutely! I know people with other autoimmune disorders who also complain of memory or other cognitive problems. Seems to be a common denominator. There's so much they still don't understand about these diseases. I have to spend a lot more time being 'organized' because I can't rely on my memory for much these days. Frustrating.
09-03-2007, 04:08 PM
So do I, and I hate it! I used to be so organized, remembered nearly everything, and now I can't even remember to check food on the stove! The thing that hurts the worst tho, is I can't watch my baby granddaughter. You wait 50 years to be a grandma and now this. I did get to when she was a baby, but she is a toddler (2) now, and FAST!! Laughing