[mandie65]

For a long time now I have been having memory problems, silly things to start with like losing keys etc. It is getting worse my daughter has to do my medication for me, I have sle aps diabeties arthritis and asthma, my rhummy said it was down to bad warfarin control.
Does anyone else have this problem.

 

[lazylegs]

Hi Mandie,

You are not alone in the memory loss department. Many of us struggle with it. In my case I have found that when the disease is less active my memory is better than when the disease is out of control. The following link is a previous thread discussing memory loss.

http://www.thelupussite.com/forum/showthread.php?t=72543&highlight=memory+loss

Memory loss can be caused by many things. The following site shows other possible causes. Definitely mention it to your doctor at your next visit.

http://www.mayoclinic.com/health/memory-loss/HQ00094

Take care,
Lazylegs

 

[Katharine]

Hello Mandie and welcome

As Lazylegs has said you are far from alone in this and many of us suffer from varying degrees of memory loss.

Unfortunately it can be very difficult both to find the cause and to find effective treatment.

Like you many of us have overlapping diseases and memory loss can be caused by one or a combination of them. It is recognised that lupus has a degree of brain fog attached to it. Again I agree with Lazylegs that effective disease control often helps a great deal but it can be something that, a lot of the time and up to a point, we need to learn to adapt to and live with. APS can also cause memory loss - I wonder if that's what the rheumy meant by bad warfarin control? that it is not being controlled enough?

For me I found that there was a lot of trial and error in finding effective treatment and improvement. My memory problems were far worse when my disease was uncontrolled but there were apparently other reasons and I eventually found huge huge relief from a new med added to my mix.

I have now regained an acceptable degree of functioning. I can work because I can think in English and French most of the time (except extreme tiredness). My brain has simply become a lot quicker again. I do still have problems with incidental and miscellaneous information - I still find my brain shoving it into a "not really needed" drawer and it can be awful hard to retrieve :lol:

It is very important to say it to your doctor. I'm not going to say the word "mention" here as I find it is something that doctors do tend to ignore (unless you start having things show up on MRI's etc.). I had to go on and on and on about it before I finally got really taken seriously and then it was by my GP simply because he knew me from before. I have a great neuro but she's hasn't seen me enough and has never seen the "real" me. The rheumy took it seriously but was really at a loss to "find" a solution and also I was in a phase where she didn't want to change any "lupus" meds.

Hopefully it will greatly improve for you when your meds and disease control have settled.

bye for now,
Katharine

 

[onetay]

Mandie,
I know what you are talking about with the memory problem, I had to go to a pill box and to think I laughed at my parents when they did it. Well, I guess things do come back to bite you in the butt, just wish I could remember it the next day lol. I really do have the memory problems, it does seem to be getting worse but I try to do little things to help with it. I write more things down then before and I try not to multi-task any more.
I hope you find a happy middle ground for your memory and your ability to cope with it all. We could chat but chances are in a few weeks we would not remember it sorry I have a bad habit of joking when things are bad. I just think if I don't laugh about it I will always be crying and I just can't do that, you should try it. It does make you feel better.
Tammy

 

[kate88]

I am with you on the brain fog

I hate admitting this, but my husband and I have both noticed that my short term memory seems to be definitely impaired right now, and certain things about long term memory are problematic.

I have always felt like a sharp person in the past, but lately I am having trouble bringing up pieces of information that I always could before, names, remembering requests that my husband will have made 5 minutes earlier. I am hoping that this is just stress, but I suppose this maybe a more permanent issue.

It's hard to say what's stress and what's physiologically not working properly.

I have been keeping a notebook and writing things down, and referring to it, to try to cope with the memory problem. Especially at work. Hey Tammy-my husband and I joke about the pill box, but sadly, I think I am getting one, because it's going to simplify things when tapering. Sure as heck don't want to forget whether or not I have taken prednisone tab, and, I am tired of counting pills.

I have also been napping every day, to try to help with the foggy feeling.

 

[lin]

For a long time now I have been having memory problems, silly things to start with like losing keys etc. It is getting worse my daughter has to do my medication for me, I have sle aps diabeties arthritis and asthma, my rhummy said it was down to bad warfarin control.
Does anyone else have this problem.

Mandie we know what your going htrough hun, must be a lupie thing :hehe:
at least we know what u mean xxx

take care Lin

 

[mandie65]

Hi guys
I do the pill box too, I have had all the cat scans and mris so i know there are no nasties lurking, it does get annoying when you forget peoples names, i also forget to turn the cooker off, my daughter keeps banning me from the kitchen, but thats a good excuse not to do the washing up:lol:

 

[halfpintfl]

Hi Mandy, right now I am in the same spot that you are, stress and the holidays has put me in it this time. But several yrs ago, I was very bad, I "could" drive a car, but I did not as it was not safe for me to even do that. Go back to yesterdat, ( I
think ) and find the link that Clare posted, I found it was a life saver, and I felt like 200 pounds had been taken off my shoulders. I also felt that- I am not nuts!!!! I
am going to make a copy and give it to my Rheumy. Your journal is also a good idea,so smile, we all are normal. You are one of us.

 

[LolaLola]

Mandie, One big problem I have is when shopping. I will be looking at something , my Husband will say something like he is going to the next aisle to get milk. I will say yes and then immediately forget what he has said. I am quite short and can never see him over the top of supermarket displays so I invariably end up having to ring his mobile and ask where he is!

Also when tired I talk absolute total nonsense.
x Lola

 

[Avis]

Hi! Mandy
I am having the same problem with my memory. I was forgetting to take my medicatiion I have now resorted to puting a note in the bathroom on the medicine cabinet and in the kitchen I also put reminders on my calender at work to remind me to take my lunch time pill. I retire on the 31st December so I have now put the reminders on my calender at home. I go shopping to buy what I need I come home wthout it.
Avis

 

[Pink Pearl]

Mandie, you are not alone. I can mark my memory problems to happening more obviously since I went thru steroid psychosis nearly 17 years ago. That lasted for about 6 months and nothing has been the same since.

I also notice that if I am really wearing down and I do my methotrexate IV, that the next couple days are a lot more "fuzzy" memory. Other weeks I sail right on thru as tho nothing happened.

I have a lot more trouble taking information from short term memory and turning it into long term memory. I make a lot of notes to myself. If something is not on my calendar, then there is no guarantee of it happening. I keep a calendar in my purse as well as on the wall.

In 2007 I went thru a flare which affected my brain/memory. I would look at my calendar, see an appt that day, yet it did not occur to me to get myself to that appt. It took a few months for that to work itself out, and when it did, I was NOT missing it! Pun intended.

Good luck on your journey thru this. You'll make it.
Sally

 

[Monica3]

Mandy-
I know I have memory/concentration/name recall problems because of the Lupus. Diagnosed 1 and 1/2 yrs ago and can definitely tell that I am not the same "sharp", articulate person I once was. I notice it, probably my husband notices it, but because I have new doctors who did not know me before my diagnosis, my rheumatologist doesn't seem to think much of my complaints about this (maybe there's not much that can be done about it?). I do not have severe Lupus (just joint pain/swelling, malar rash, fatigue, occasional pleurisy) and have never taken prednisone more than 5 days at a time (plus daily Plaquenil, 81 mg aspirin, Celebrex, pain meds PRN). So, I think the Lupus itself causes these symptoms, though I bet the stronger meds can make things worse.

Does anyone know of any benefit to actually seeing a neurologist? Are there any recommendations re: supplements, exercises for these memory problems?

 

[lazylegs]

Hi Monica,

Getting the Lupus under control will help with a portion of the memory problems. Rest is important also. Learning anything new is supposed to be helpful. I do puzzles, crossword puzzles, memory games and I am trying to learn Spanish to keep the brain stimulated.

If your memory is a real problem a referral to a neurologist might be in order just to make sure nothing else is going on.

Take care,
Lazylegs