[Stacielee1967]

I talked to my GP about this feeling of poor concentration and confusion. I guess it is what everyone calls brain fog. She informed me it was a natural thought process when dealing with a chronic disease. You’re always in thought mode about your disease and everything else is secondary thus causing poor concentration and confusion.

Fine, fair enough, that sounds realistic, I think. Is it the real reason for the poor concentration and confusion, who knows? However, it is very real to us and quite frustrating. Now I ask you, do we all spend all day worrying about our disease, I guess we must and then forget that we do! I don't know about any of you but I have a diary that is marked up with reminders to do. It is a good way of keeping tract of important things to remember, that is if it works! I seem to spend most of my waking hours looking for the stupid thing! But not to worry! I have pads of paper in every room that I write notes to remember with dates as not to forget what I need to do! Maybe I should use these note pads to start a treasure hunt, winning prize, my lost diary.

I guess there is a medical reason for ever single complaint we have, there has to be as far as our doctors are concerned. I personally think that doctors who treat conditions and offer advice should suffer from that disease to actually have empathy and understanding! I once worked with a doctor who wrote a prescription for co-codamol 30 mg or what the US would call darvocet for a patient who is suffering from an obstruction due to a kidney stone. Now, I have passed over 30 kidney stones and I looked at this doctor and asked, have you ever had a kidney stone? I didn’t think he had because that dose of pain medication is a joke, morphine sometimes doesn’t resolve the pain. Now this situation only emphasizes that doctors need to suffer from the condition they are treating to truly understand and show some form of empathy and realize that every complaint doesn’t necessarily need to have a medical reason behind it, it is just a symptom of a nasty, nasty disease that us lupus patients have to deal with very day of our lives.

 

[mooks]

I totally agree with everything you just said!! luckily i have a great gp and rheumy now but it hasnt always been that way!! some gp's just make stuff up when they have no clue about the real reason!! i explained to my rheumy about the lack of concentration/confusion stuff and he sent me straight for lots of tests. perhaps you should tell your consultant not your gp...in my experience gps arent that clever!! there could be a very real reason for your brain fog and to dismiss it as something thats in your head is just irresposible! poor you...go tell your rheumy(or whoever your lupus doc is) and im sure they will react differently xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx ps the treasure hunt sounds great haha

 

[Stacielee1967]

some specialists are that understanding

Mooks,

Talk to my rhuemy, that is if she was understanding! She informed me on my last visit if I was less angry then I would have better pain control. Let her walk a mile in my shoes and then tell me that!! Doctors need to understand that not all people with chronic diseases has only that to worry about. We have lives and as with everyone we also have personal issues to deal with like everyone else that is not suffering with chronic diseases. We are people too, not a disease or a condition!

 

[Taree]

Right on Mooks! I was getting brain fogs way before I even knew I was displaying sle symptoms so don't see how my sub-con could've been working overtime!! As for kidney stones... I had laser treatment years ago for one - I have never in my life known such pain! I've had a broken jaw and foot surgery which paled in comparison to the pain of such a little bugga!

As for treasure hunts, I consider it a major accomplishment just to eventually find my lip ice in my handbag without forgeting what I'm looking for!

X T X

 

[Katharine]

Hello Stacilee,

Brain fog or cognitive problems are a well known and scientifically recognised symptom of lupus which can be more or less severe depending on how one is affected.

Below, just one link which I quickly googled:

http://www.lupusresearchinstitute.org/lrinewsdetails.php?cognitive

Obviously, for some people, brain fog can be brought about or made worse by tiredness. Many of us may not have truly slept well for months or even years. We toss and turn, can't get comfortable or are even in a lot of pain.

My cognitive problems have significantly improved (although not gone) since getting the disease as a whole more under control.

I don't know about other people but I certainly do not spend my life thinking about my disease - what a daft comment - I have so many other things in life to think about and to enjoy!

I also agree that I had pretty severe cognitive problems years before diagnosis.

And by the way, if my GP ever said anything quite as stupid I would floor him!
Katharine

 

[Jirel]

Thanks for posting this, you've reminded me that I wanted to tell my Rheumy when I see her next week that my concentration and brain fog have improved when I cut down on my Topamax (I haven't cut down much because I want to talk to her first). Wonder how your GP would explain that one away? Is it because I'm not worrying about the drug as much? :rotfl:

(Not that its taking care of all of it, just some of the worst of the fog.)

 

[halfpintfl]

Katherine, thank you very much for that link. I just read it,
and it really took a big load off of my mind. Everyone should read it.