F Jean Memory problems?
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HI F Jean
Yes I do, and I think a lot of lupus sufferers do. There is good info here:
http://www.uklupus.co.uk/bn14.html
I forget words for things, calling a greenhouse a briefcase twice before I realised I had it wrong! I also forget or can't remember whether I have said or done something. i am also notorious in our house for writing down appointments wrong and then turning up at the wrong time, so my partner double checks things like this for me.
It ebbs and flows with the other lupus symptoms, the more tired and in pain I am the worse it is, which is pretty obvious really as the brain is too tired and too busy dealing with the pain to deal with other things I guess.
I think of it as my "woolly brain" and sometimes the wool is more dense than others. Putting the wrong things into the fridge (mugs, my phone and a diary amongst them) is one of my classics and I mislay my keys more often than most. I try to keep a sense of humour about it. The worst time was being in a shop and suddenly not understanding how to count out change, very humiliating. I was pretty unwell at the time and should not have gone out. Similarly when I am unwell I cannot navigate well, even on foot in familiar places I can get a bit confused.
I use a diary, the diary on the computer and my mobile phone facilities to help with all this memory. And sticky notes around the house help too.
Doctors call all this muddle brain stuff cognitive dysfunction, and it is a well known lupus symptom.
I think the thing to do now you are aware of it is explain it to those nearest and dearest to you so they can both understand and help you. And try not to be tooooo embarrassed there are a lot of us out there in a very similar boat.
Love
Sara
Yes I do, and I think a lot of lupus sufferers do. There is good info here:
http://www.uklupus.co.uk/bn14.html
I forget words for things, calling a greenhouse a briefcase twice before I realised I had it wrong! I also forget or can't remember whether I have said or done something. i am also notorious in our house for writing down appointments wrong and then turning up at the wrong time, so my partner double checks things like this for me.
It ebbs and flows with the other lupus symptoms, the more tired and in pain I am the worse it is, which is pretty obvious really as the brain is too tired and too busy dealing with the pain to deal with other things I guess.
I think of it as my "woolly brain" and sometimes the wool is more dense than others. Putting the wrong things into the fridge (mugs, my phone and a diary amongst them) is one of my classics and I mislay my keys more often than most. I try to keep a sense of humour about it. The worst time was being in a shop and suddenly not understanding how to count out change, very humiliating. I was pretty unwell at the time and should not have gone out. Similarly when I am unwell I cannot navigate well, even on foot in familiar places I can get a bit confused.
I use a diary, the diary on the computer and my mobile phone facilities to help with all this memory. And sticky notes around the house help too.
Doctors call all this muddle brain stuff cognitive dysfunction, and it is a well known lupus symptom.
I think the thing to do now you are aware of it is explain it to those nearest and dearest to you so they can both understand and help you. And try not to be tooooo embarrassed there are a lot of us out there in a very similar boat.
Love
Sara
Hi again Jean,
Yes, a lot of us have memory problems. Like you I used to have an excellent memory. At one stage I had the memory problems and "brain fog" - a general lack of concentration, fuzziness and memory problems. I'm a translator so when it was so bad that I couldn't remember three words I had read it was a real problem as I coudn't work at all. Thankfully one of the meds I was put on got rid of a good deal of the fog and I can now concentrate for long enough to be able to at least read a letter, an article or do a little work.
The memory problems haven't got any better however and I find that I instantly forget anything that my brain doesn't seem to consider essential. The problem on that one is that sometimes my brain and I disagree as to what is important :lol:
I recently forgot my parents' phone number that I have known by heart for over ten years. I have never used my phone's memory function for numbers.
I also forgot my business account pin number and had to get a new one. I knew which four numbers were in it but couldn't remember the order!
Everytime anyone asks me what year one of my sons is in I can't remember - don't ask me why that one! And recently I had to go to Ireland but when I got home, I couldn't remember a thing we had in the cupboards, or what was on a video or anything like that. And, of course, I keep seeing people that seem familiar and, for the life of me can't remember who they are.
All that just to say that you are not alone in this. It should improve with time. One thing that helps a lot is getting disease activity under control as it is a very real and recognised part of lupus. Another thing that is very important is tiredness. We are sometimes so tired that we don't remember what it is like not to be. By the time I was put on medication I hadn't slept soundly for about two years and that takes an awful lot of catching up. It is important to pace yourself and not overdo things. By that I don't mean overdo for someone else. Their idea of overdo is my idea of impossible. You have to listen to your body - not other people. Avoiding stress is also essential for that rest that you need.
In the meantime - take notes. I now write everything that has to be done in a day - from the tiniest to the most important - in a diary.
Katharine
Yes, a lot of us have memory problems. Like you I used to have an excellent memory. At one stage I had the memory problems and "brain fog" - a general lack of concentration, fuzziness and memory problems. I'm a translator so when it was so bad that I couldn't remember three words I had read it was a real problem as I coudn't work at all. Thankfully one of the meds I was put on got rid of a good deal of the fog and I can now concentrate for long enough to be able to at least read a letter, an article or do a little work.
The memory problems haven't got any better however and I find that I instantly forget anything that my brain doesn't seem to consider essential. The problem on that one is that sometimes my brain and I disagree as to what is important :lol:
I recently forgot my parents' phone number that I have known by heart for over ten years. I have never used my phone's memory function for numbers.
I also forgot my business account pin number and had to get a new one. I knew which four numbers were in it but couldn't remember the order!
Everytime anyone asks me what year one of my sons is in I can't remember - don't ask me why that one! And recently I had to go to Ireland but when I got home, I couldn't remember a thing we had in the cupboards, or what was on a video or anything like that. And, of course, I keep seeing people that seem familiar and, for the life of me can't remember who they are.
All that just to say that you are not alone in this. It should improve with time. One thing that helps a lot is getting disease activity under control as it is a very real and recognised part of lupus. Another thing that is very important is tiredness. We are sometimes so tired that we don't remember what it is like not to be. By the time I was put on medication I hadn't slept soundly for about two years and that takes an awful lot of catching up. It is important to pace yourself and not overdo things. By that I don't mean overdo for someone else. Their idea of overdo is my idea of impossible. You have to listen to your body - not other people. Avoiding stress is also essential for that rest that you need.
In the meantime - take notes. I now write everything that has to be done in a day - from the tiniest to the most important - in a diary.
Katharine
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3,770 Posts
Yes i get this a lot...
I have cns/lupus/vasculitis so that will be some of it but when my inr is to low (i have APS)...this is also a factor
i write EVERYTHING down...
I have cns/lupus/vasculitis so that will be some of it but when my inr is to low (i have APS)...this is also a factor
i write EVERYTHING down...
Yes FJean
Sara summed it up perfectly regarding the symptoms.
The better I feel, the better the brain stuff.
The way I get my head round it ( scuse the sort of pun) is to think my brain is an inflammed piece of tissue just like the rest of the connective tissue.:wink2:.
Although Im miles better I can honestly say I have never gone back to feeling 'normal'. Normal is boring anyway is it not.
Nicky
Sara summed it up perfectly regarding the symptoms.
The better I feel, the better the brain stuff.
The way I get my head round it ( scuse the sort of pun) is to think my brain is an inflammed piece of tissue just like the rest of the connective tissue.:wink2:.
Although Im miles better I can honestly say I have never gone back to feeling 'normal'. Normal is boring anyway is it not.
Nicky
Hi Jean,
This is a major problem, for me. It has gotten steadily worse over time, which wouldn't necessarily be the case with you.
I think most often, once the disease is properly treated.. some memory problems improve for most of us, with the disease.
Best Wishes,
Sandy
This is a major problem, for me. It has gotten steadily worse over time, which wouldn't necessarily be the case with you.
I think most often, once the disease is properly treated.. some memory problems improve for most of us, with the disease.
Best Wishes,
Sandy
Thanks everyone, There are so many things that go on in my body and I never know if it's me or the disease. My sore legs that get so weak I can hardly stand up! I was glad to hear that I'm not alone re: the panic attacks. I started on lexapro and that has seemed to help Jean:lol:
Hi Jean,
Memory problems are very common as you have seen by the replies and the docs class it as mild nervous system involvement and there isn't a lot of treatment for it except to get the disease under the best control possible and rest when needed unfortunately.
You do mention that your legs get weak to the point of barely being able to stand up. Whilst this could be some kind of muscle inflammation, it's also a possibility it could be tied in with nervous system involvement of a more serious nature. So it's best to mention this and make a point of it to your treating Rheumatologist. If it was to do with nervous system involvement or indeed muscle inflammation then there are meds that will help and it would need to be treated so as not to risk further deterioration and permanent weakness. There may be a more simple benign cause for it but you won't know that until you get your doctors opinion on it. Pays to mention it.
love
Lily
Memory problems are very common as you have seen by the replies and the docs class it as mild nervous system involvement and there isn't a lot of treatment for it except to get the disease under the best control possible and rest when needed unfortunately.
You do mention that your legs get weak to the point of barely being able to stand up. Whilst this could be some kind of muscle inflammation, it's also a possibility it could be tied in with nervous system involvement of a more serious nature. So it's best to mention this and make a point of it to your treating Rheumatologist. If it was to do with nervous system involvement or indeed muscle inflammation then there are meds that will help and it would need to be treated so as not to risk further deterioration and permanent weakness. There may be a more simple benign cause for it but you won't know that until you get your doctors opinion on it. Pays to mention it.
love
Lily
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