Hi I'm newly diagnosed, still have lots of testing. I'm worried about lupus affecting my brain.For years I have laughed and cried because of memory problems, "brain fog" difficulty paying attention ect... These are a severe problem for me because I have 4 kids and I feel like I cant be consistant with them, my house is a mess and I am the most unorganized person I know! Does anyone else have these problems? Is there a test to find out if my Lupus is causing it? Most of all does it get any better with meds?
My kids need me! This is really frustrating.
Brain fog is definitely one of those things that comes and goes with lupus. Does your doctor have you on any meds right now? Have you discussed the "brain fog" with him? Some doctors tend to discount it - I had that problem - I am an extremely quick-witted person, but I can get practically brain-dead at other times.
Plaquenil is pretty much the standard drug to start on with lupus. You have to work your way up on the dosage b/c of nausea but it's not too bad if you have a good b'fast beforehand. I noticed an increase in irritibility while on the drug - have some other friends that are on it that noticed the same thing - it's just something to warn folks around you about.
The key to living a fairly normal life is adaptability. Realize that there are some days when you're just not going to be able to do it all. Planning helps - freeze plenty of meals when you're having a good spell so you can nuke them when you don't feel like getting out of bed. Realize that your house may not win the "House Beautiful Clean House Award" this year - but if you can get family to help, even with little things, it can be a godsend. AND, most importantly - don't overdo it when you're feeling great - pace yourself. That's the surest way to end up paying double for your productivity.
There are other boards out there that help with day-to-day struggles and offer more of a "sisterhood" being out there. Of course I can't post them here - but if you search, you'll find them in some of the LARGER / More Famous sites...
Thank you so much for you post, I guess its just the "brain fog" When Lupus is active in the brain its symptoms are sesures? is that right? Does any one know how common that is in people with organ involvment?
Brain fog isn't seizures - it's when you are not operating on all cylinders mentally. Example - you know you need to go to the grocery store, you get in your car and you have to struggle to remember how to get there. It's not like you don't recognize people, it's just like you're sort of out of it for a while - it can last a couple of hours or days at the most.
Organ involvement occurs in like 40% of lupies (pet name for folks w/ lupus). Usually, it's the kidneys - which is one of the reasons that regular urine screening for protein is important. And a lot of the strong drugs that we are put on can damage our organs too. BUT, if you stay on top of your disease with your Rheumy, organ involvement can be minimized - there are a lot of new treatments. I met a lady that had lupus-related kidney problems, went on a drug that is used for chemotherapy which "cleaned" her system - that was 4 or 5 years ago and now her kidneys are working great.
Lupus is a lot like a rollercoaster ride. A lot of ups and downs - but you usually "feel" when you're going downhill and can react to minimize it. Also, avoiding stress and sun are two of the MOST important factors in preventing problems.
Brain involvement is pretty rare - is this something that you are experiencing? Is this something you've discussed with your Rheumy?
The bottomline is that this disease can be incredibly overwhelming. The best thing you can do is educate yourself. A GREAT place to start is the arthritis foundation. They have lots and lots of free information that they can send you. Call your local office. I'd also encourage you to see if there is a local lupus support group (the local arthritis and/or lupus foundation can help with this). This is a disease that you can live a considerably normal life most of the time - especially with medication and healthy lifestyle and the sun/stress avoidance.
If there's anything else I can do, just let me know!
[This message has been edited by scbagrrrl (edited 05-01-2002).]
Something often forgotten is that anything with blood running through it is fair game for lupus to affect. Keeping this in mind, also remember that your brain #1 has blood running all the way through it and #2 it's an organ. The brain can be easily affected by many many things. Too many dr's discount any kind of CNS involvement until there is something as serious as seizures or worse. Because they do this, it makes the CNS worse because then psychological ramifications enter in. How reassuring is it when you trust this doctor to help you, and he sits there telling you that it's not important that you seem to have lost your mind? Sometimes, when you are feeling a little more foggy than usual, slow down, deep breathe, give what you are doing some thought. Sometimes what is going on is your mind is running faster than it is capable of doing. You need to slow it down for a few. Give the kids to the hubby, grandma, SOMEBODY for a few hours and go somewhere that doesn't depress you, like a dirty house might. Then when you pick up the kids, go home and get the shovel out and hand it to your kids and tell them to clean. My son is 3 years old and cleans the apartment when he's the one that made it messy. He's been doing it since he was 2. There's no reason why a child shouldn't clean up after themself. Granted, you feel like crap and you don't want to chase them around making them do something. So, sit on the couch, think of creative ways to get them to do things whether with creative punishment that does not require you to get off the couch, or rewards that don't require much movement. This is the joy of motherhood, outwit the kids. Soon, you'll have them doing the cleaning for you, it may not be how you would have done it, but it will be done and they will have pride within themselves for being oh so industrious. Once they are in the habit of doing things for you, you will have the ability to sit down and do nothing but enjoy your fogginess.
My daughter just went in hospital this scared her and I tremendously. She had brain FOG. They have ran a cat scan, spinal tap which were negative and a MRI which showed something in-conclusive. today they are running a MRI with dye in blood to see if they can find somethign more conclusive, This started about a week ago and got progressively worse she not only lost thought process but hand to eye co ordination and became short thought that may have been due to the frustration of not functioning on all cylinders, It releived me some here reading the posts thanks
Brain Fogg also accompanies Fibro. It will come and go and but after 20 years I've found that you just adapt and develope a way to work with it. Don't worry it isn't damaging and it isn't a permanent problem. it will come and go.
Amazingly I have found that if I relax instead of getting stressed when I can't remember something, it comes to me. Just pause and let yourself go blank for a bit rather than desperatly trying to remember and punishing yourself because you can't. But if hassled by demands or stressed or in a flare just go with what you can do and remember it will pass, it isn't permanent.
Don't forget this naturally happens to overly busy people who carry a lot of responsibility and have to deal with a lot of information. So you have lots of company. Hope this helps
I do so hope that you are all doing ok today. This is something close to my heart, beause of the way people seem to look at you when you slip up, or have a tendency to look at you askance, and bring it to your notice, even when you try to make light of it.
Luckily, "brain fog" isn't a diseased brain. By that I mean it isn't a tumour or something drastic like that. This term is used for a generalised horrid symptoms that we go through and which at times can be very, very frightening. Forgetfulness, which in itself is a major problem, can be laughed off by us, but we know that in our hearts it is scarey. When it in turn starts to be only a part of what we can go through, then that is when it causes us to be very aware of everything that is going on and is happening to us.
The other main thing is that not all lupus patients do in fact have brain fog. There is a lot of information to be found that will point out the fact that this type of thing happens even to people who do not have any type of physical illness. Stress, worry, family cirumstances, age, indeed anything that causes us to be overwhelmed by our situation, can cause us to be so very forgetful. So we do have to be careful that we don't diagnose ourselves and if we are worried, make sure our doctors run tests on us until we are satisfied with what is going on.
Our brain is not in fact diseased in a way that we would term it, but many things one on top of the other, cause us to be so aware of what is happening to us, and we can't explain it to anyone we know who doesn't go through it, because they would think we have really "lost it".
I have done a lot of research in my 30+ years of living with SLE, I help with emotional issues that are brought up others who also live with it, and I do my best to help in any way I can on these boards. Some pople may dismiss our feeling on what we go through when it comes to forgetfulness and so on, because of totally not understanding of what we go through. I have a bit of information which I give below that I hope will be of help to all of us here who are having these problems. It makes it understandable in a clear and concise way. I have more information on this and will post it if it is of interest to anyone.
Doctors throughout the world are now recognising the importance of subtle forms of brain involvement in lupus as well as the more obvious brain problems. Never underestimate brain involvement. It may vary from mild depression, to memory loss, to much more severe problems such as seizures. In general there are two main causes of brain disease in lupus. The first is lupus disease itself which can cause alterations in the brain activity. The second is the clotting disorder associated with some lupus patients, the antiphospholipid or Hughes syndrome. It is very, very important for the doctor to try to distinguish between these two major causes of neurologic involvement as the treatments are clearly very different.
Take care my friends.
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 08-09-2005 at 11:02 AM.