[Freya]

I'm back for your thoughts again guys....
I consider myself to be reasonably intelligent and articulate. My job is full time administration type work using spreadsheets and communicating to all levels of the workforce and involves a lot of interruptions which has always driven mad but I cope.
For the last few weeks I've been struggling to keep abreast of everything. I don't retain information well and always refer to notes and records rather than answering a question right away but recently I've found it hard to stay focussed on any task and am struggling to recall things which I really should remember. I've had a few alarming and embarrassing events where I've gone totally blank to the point where I've had to apologise because stalling hasn't been enough to bring things back.
I'm finding myself particularly foggy in work and I don't know if I'm allowing it to happen because after 10 years the job is loosing its spark, or if I don't feel it so much in my free time because I'm not undertaking as many mental tasks at home.
I'm making shocking typing errors which I can't see for looking too, but from what I've read from you guys, we're all in the same boat there!
I'm taking Plaquenil and Prednisolone and up to this point I've only had joint and blood involvement (which has settled down a lot since my last post). I'm terrified of going doolally and I'm wondering how on earth will I know if this is something to take seriously or if I'm being a bit blonde? (No offence meant to the blondes out there!)
Regards,
Freya

 

[confused1]

Dear Freya, You are describing the exact thing that happened to me five years ago. For months, I watched my "ineptitude" grow and my contracts dwindle. Clients would stare at me with open mouth and say "what is WRONG with you?"

Well, lupus for one. Sjogren's for another.

And although I am not the total wreck mentally that I was then, I still am completely unable to work. I now collect my disability pittance and try to keep myself occupied. Naps are good.

I have no way of knowing whether or not your sharp mind will come back now that you're on meds. I do know that you're not alone and you're not crazy or stupid or coming down with premature dementia.

Please keep posting and venting. It helps if you can find a good and trusted friend to drink slow cups of tea with you and listen and not judge except to know for sure when you need a hug and when you need to be given some space. Thank God for our friends. The real ones who don't disappear when things get rough.

It will get better, one way or another. Time is healing. Although sometimes just when you think you've made peace with the beast, the anger and pain and denial will come roaring back and catch you off guard.

But remember that you're not alone. And that everybody at this site understands and relates and believes you.

Hugs,
Sunny

 

[lazylegs]

Hi Freya,

When I was working everyone relied on my memory and organizational skills. When I started having little slips here and there I brushed it off because my friends in my same age group were mentioning the same thing. When they increased I mentioned it to my rheumy and he said it was expected with my medications. I noticed that it was much worse when I was tired so I tried to get more sleep. That didn't work, I was just in a fog all day.

The day I sat at my desk and had no idea how to do something I had done every day for 14 years, I knew I wasn't just having what I jokingly called senior moments. Testing showed I did have memory loss and periventricular white matter lesions.

Since then I have done a fair amount of research and found doctors are finally studying what we all call brain fog. Most Lupus patients I know do have some form of memory loss. The extent does vary. Definitely mention it to your doctor and stress how it is affecting your work.

Take care,
Lazylegs

 

[Jirel]

When I first started working for a bank in 1980 I started taking classes offered via the American Banking Institute - the company paid for them. When I moved to Denver, I took classes there despite being in snow for the first time in my life. When I had a 2 month layoff while being an independent software consultant in 1999, I taught myself html, frames and set up a complicated website to test my skills.

At my last review my supervisor talked about taking extra classes and I burst into tears. I no longer feel confident in my ability to learn things. I managed to get through a class and certification as a software tester but I can no longer manage programming. I cannot look forward to taking any type of class the way I used to.

Whether it is the drugs or the disease, many of us have found our ability to concentrate wavering. I was having everyone at work send me things in email so I wouldn't forget them. Now that I'm out of work, I put all appts on my cell phone with an alarm 30 mins before to try and help me remember them. I forget almost every morning to test my blood sugar.

All I'm saying is, believe me; you are NOT alone and it is in no way your fault.

 

[neongirl]

As the others mentioned, you are not alone:there: I too suffer brain fog. I also get lost a lot, put things in odd places, forget entire conversations etc. :sad:

 

[Katharine]

Hello again

Yep, you can count me in there too. I also suffer from brain fog. At one stage is was so severe that I couldn't work at all. I couldn't remember three words that I read, never mind a sentence!

My brain fog was very present and far worse before I started treatment. It has improved quite a bit on treatment but I am still terribly absent minded, have very poor short-term memory, keep going totally blank and having to ask people to repeat, sometimes hear what people say but can't register it and have a pretty short concentration span.

I also suffer from what I call "typing dyslexia" which, like all the other symptoms is far worse when tired. Basically, once it sets in I have to stop and take a rest. Luckily I can as I am self-employed and have no-one looking over my shoulder.

I have learnt to write absolutely everything down. I mean really everything, even making a phone call has to be written into my diary (I have a bigger diary now, desktop type which serves as my "brain").

I'm afraid there's no simple answer but it may well improve with treatment and you will learn to adapt to a great extent too.

Katharine

 

[dudley]

Hi,

Boy do I know the feeling. Your syptoms are very common with SLE. Even before I was DX'd memory and cognitive skills started to go. Yes I had everyone start to email me when I was working and saved everthing.

I write everything down. Even the simplest things. I was never an organized person (one of those people who's desk was a mess but I new where every thing was) I had to become organized. I started leaving myself messages at work for things that had to be done at home. Would leave a message from home to work if I thought of something that had to be done. My computer had so many yellow stickies that I had to start color coating them.

Ask Doc to test your B12. This can cause major memory problems.

I was DX'd also with CNS lupus a couple of years ago.

Elaine

 

[peonyprincess]

Freya,


I, too, traveled down the path of confusion. I used to be an ICU Supervisor and as one would guess, I was expected to rattle off any and all knowledge to my peers and be ready to answer any questions to family, physicians, and when a patient was going South so to speak, I had better know what to do......yelling "call 911" didn't cut it. So I was on the top of my game for a long time until this little thing called Lupus came and shoved me on my butt. After an illness that took me three months to come back to work, I went back to ICU, however, I started to feel a little off my game and I would go home and relax and read, read, read. Then I gave it a little longer and I just didn't feel like I could get my game back at all so I went to HomeCare nursing. That was wonderful. I felt better and wasn't in such a rushed and go-go-go setting. If the patient was at home, they were obviously not sick enough to be in the hospital but needed some extra help. I was able to learn the new information with lots of note taking. But then the health thing got to be too much and too bad and the doctor told me that when I was sicker than the patients then I couldn't be a nurse anymore.

So, now taking up my time is my new granddaughter, reading lots of books and answer the thought provoking questions at the end, have been sandbagging, not much thought there, and at getting ready to start a Lupus support group as well as a Lupus Foundation. So, I too have found new things to keep me entertained. Yes, there are times I want to cry because I cannot be my lifelong dream of being a nurse. Yes, it sometimes is rough but I try and deal with it. I do look back and I have saved my share of lives and still see them about the community and there are others that I was there when they crossed on. Knowing what I know, I feel pretty blessed to have had the career that I had.

First I feel it important that you talk to your physician about what is going with you. Let him see what he thinks. Have you been seen by a Neurologist yet? How about an MRI or CT to see if something is going on? Have you started new meds that might be conflicting with others or maybe summer foods. Maybe a nice quiet vacation is what you need. Whatever, don't be hard on yourself.

Nancy

 

[LolaLola]

Hello Freya,
I just wanted to say I am sorry this has happened to you. Many of us were previously a walking encyclopaedia, telephone dirctory etc. Maybe you are a bit distracted at the moment and it might improve. In any event do the best you can to look after your health.
x Lola

 

[Freya]

Thank you so very much for all your responses. I am feeling so humiliated about this. I can laugh and joke with my boyfriend about it thank goodness, but in work I have put up a professional front and it's hurting my pride quite badly to admit things are slipping.
Hopefully I'll be able to approach this in the same positive manner that I have everything else. For example, once I accepted the lumps and bumps on my feet, I saw it as a legitimate excuse to go shoe shopping (yippee!) and buy some of those less-than-fashionable comfort sandals that my Mum wears (and, I confess are a dream to wear )

I haven't spoken to my Rheumy about this because I'm still waiting for a follow-up appointment. I also feel like a bit of a fraud because the raft of tests I was given 3 months ago were all fine thank goodness. (Lung function, Cholesterol etc).
My main dilemma now is how to put this to my boss. I've been honest with him all along and I'm sure he'll be fine, but in these uncertain times (credit-crunch, oh joy), I'm reluctant to do anything that could make him question my position.
Regards,
Freya

 

[cad]

Hi Freya,
me too, i suffer terrible confusion and forgetfulness. I feel as if i am constntly i n a spin trying to catch up and keep on top of things.
I had to try to teach my older kids to be aware of school dates such as sports activities after school etc and taking back reply forms. There are lots of other exaples aswell, i forget words and what i am doing in the middle oof it.
Can be very frustating. I don't work but i can imagine how difficult it must be for you especially in your role.
I hope things get better for you.

Cassie

 

[Clare.T]

Hello Freya
I am so sympathetic. I feel like a cretin compared with how I used to be but I think it is as much due to getting old, and having a lot of worries on my mind. But I once took a medicine that rendered me a witless zombie with no short term memory at all. It was fantastic for my skin problems - I woke up one morning with a completely clare -haha I mean clear - face. Luckily I didn't have to decide between brain and beauty because I got a clinically unacceptable side effect so I had to stop taking it.

Apart from getting B12 checked, there's the possibility of cognitive problems being caused by thyroid, antiphospholipid antibodies,fibromyalgia even diabetes, depression and of course the anxiety it provokes makes things even worse.
Are all your other symptoms well controlled? If not or even if they are, maybe you could do with an additional med. Maybe a low dose aspirin could help some. Many of us are on low dose aspirin anyway.
Mepacrine ( US Quinacrine) can be added to the Plaquenil to excellent effect. It is well known as a cortical stimulant and can provide additional disease modification working synergistically with the Plaquenil. You might be able to reduce or even get off the Prednisone. A bit of azathioprine /Imuran could help all round too.

In one study 70% of lupus patents showed cognitive malfunction compared with 20% controls. Dr Wallace mentions trycyclic and SSRI antidepressants as possible helps - many doctors think that lupus patients have serotonin problems even if they are not clinically depressed. He also mentions DHEA as helping in some cases although that is not available in the UK outside of the rare hospital setting; St John's Wort, although there are many contraindications and interactions with that, cognitive therapy, biofeedback and ginkobiloba. That too needs to be tried with caution as it can thin the blood and and there may be other contraindications. Check them out on non commercial sites before trying them and you must let your doctors know, - any doctor or dentist, before surgery for example

Good Luck
Clare