[senior]

Hello everyone I've been diagnosed with lupus for over a year now, and although I have always had the aching, swollen joints etc., I have also started to feel likeI cant think or that I am trying to think through custard or that I try to organise myself and either forget what I am doing or I cant be bothered to do it, handy really as I work full time, the GP said oh just exercise more and get out and about not a lot of good as I am shattered just doing day to day stuff and the rheumatologist says nothing to do with lupus so may be depression or may be stress and change your job which I didnt find very helpful, any thoughts on this or am I just wallowing in self pity.
Thanks for any imput

Senior:ermm:

 

[oesa]

Hi Senior - FIRE THAT RHEUMATOLOGIST!!!

Seriously. That kind of antiquated thinking makes me SOOOO mad! "Brain fog" is a well-established part of lupus. You may want to rule out depression, but dismissing the symptom out of hand is asinine. (In my humble opinion.)

Even when I'm not in a full-blown flare I find my short-term memory is spotty, and I struggle to find the right words for things (and if I have a vanity, it's my vocabulary, so it's VERY irritating!)

You're not mad or wallowing in self-pity - If I were you I'd be looking for a new rheumy.

Cheers,

Lisa

 

[Katharine]

Hi there

I agree with Lisa that that's a pretty odd statement for the rheumy to make

Brain fog is a very typical lupus problem. There are varying degrees and for many people they'll see a huge improvement when their disease activity is correctly managed. For other people their CNS or Neuro Psychiatric involvement may be more marked and more serious.

I think I'd strangle my rheumy if she dared say that (maybe that's why she hasn't tried :lol. That said, although she does take my cognitive problems on board, I have a hard time getting her to do anything about them. That might, of course, be because there's little else she can do med wise with me for the moment other than put me on much stronger medication that isn't really justified for other reasons (always weighing up the pros and cons of too little/too much).

My neuro listens more on that score but again can do little right now as infuriatingly (but also I suppose happily) little shows up on MRIs etc. and therefore, once again, heavier treatment is not justified.

My brain fog problems did improve quite a bit when my disease activity became more controlled but I have still been left with pretty severe problems which mean work has become impossible. I'm a translator and, although I can still speak English quite easily I tend to forget words a lot and need to correct writing/typing much more than before.

My second language is French and that is the big problem. I've been speaking it every day for the last 19 years and suddenly it's deteriorated severely. I make a hash of things when speaking and can no longer make the relation between French and English. When I'm tired (which let's face it is pretty often) I can't remember more than three words in a sentence and if I read the sentence purely from a comprehension point of view can't make head or tail of it

Added to that are the things Lisa mentions, short term memory loss (even medium term really), not being able to assimilate what people say - I hear it but can't understand a word, forgetting things and people I've known all my adult life...

I'm sorry I can't help more but maybe you'll find it is some consolation to know you are not alone.

You might find these links interesting on the subject of lupus memory and other cognitive problems.

http://www.lupus.org/webmodules/web...ommunitywebchats.aspx?articleid=636&zoneid=93

http://www.uklupus.co.uk/cogd.html

Katharine

P.S. I have moved your thread to symptoms. I think the forum is better suited to your question.

 

[senior]

thanks

thanks for answering, I agree its time I looked elsewhere for a rheumatologist, especially as I pay for his advice, but anyway sorry for complaining because compared to a lot of people on this site I'm relatively okay, but it is nice to know that even though theres not a lot I can do about it Im not the only one losing the plot.
thanks again.
PS I havent been on the site for a long time cos I couldnt remember my password tee hee:lol:

 

[Katharine]

PS I havent been on the site for a long time cos I couldnt remember my password tee hee

classic :rotfl::rotfl:

 

[Clare.T]

Hello Senior
Your GP isn't much good either, since these symptoms need investigating just in case there are causes that can be treated.

It is devastating to start feeling half witted from memory loss and making mistakes and although one can find ways around it in everyday life, in work it is often impossible to hide it. As the others say, loss of cognitive powers can be due to lupus and better treatment of the lupus can result in some all round improvement. If you are on Plaquenil the addition of Mepacrine can be stimulating . I find it energising and mood enhancing , perhaps because I feel more energy and 'go'. Poor sleep habits not enough restorative rest ,and abnormal sleep patterns as found in fibromyalgia can add to not feeling so bright. Thyroid and anemia can also be investigated and there may be other realtively minor problems contributing to it.

The presence of antiphospholipid antibodies or other blood clotting disorders can also cause loss of cognition and some times blood thinners can bring improvement even a low dose aspirin can help. Perhaps there are some other symptoms of APS such as headaches.

Unrecognised depression can certainly cause loss of focus and quickly becomes a vicious circle. Exercise has been shown to be beneficial, even a short walk can help as part of general health maintenance because it produces endorphins. But of course, to casually brush the problem off is not acceptable.

Many hugs
Clare

 

[sheila t]

When I told my Rheum about my memory problems, straight away (depsite the fact I suffer from depression. I am bi-polar too) my Rheum told me you have what is called Brain fog and its classic in Lupus, so sorry that I feel you be fogged off. I was also checked to see if other problems could be the cause of it, such as blood clotting disorders as Clare has given great advice on it.

And thank you Katharine for the links.

Sheila x

 

[Douglas]

Howdy Senior,
I must thank you for your expression "I am trying to think through custard". As a Canadian who has eaten custard only when in England I think you have a perfect description of Lupus fog.
It does sound as though your medico is incompetent.
Douglas+

 

[onetay]

It does have to do with lupus and it is called by us brain fog. You can't remember words or say the wrong word that you were thinking or say it out of order. It takes time but this to can be adjusted to in life. It is no fun to have times like this but we all have them and again you are not alone. You should tell your rhuemy to visit the site and read some of the posts from people or join us in chat he would learn a thing or two. I find that most rhuemies will tell you one thing to see if you will leave them alone about it and if you do than that is that, but if you call them on it then they do something called back peddling.

I do hope that you don't spend to much time worrying about this as like I said we all have it and it is not fun but you get past it and if you can't well then you make some people laugh. I hope you are feeling well and doing well otherwise.

 

[Pink Pearl]

Hi Senior,
I also agree that this rheumy needs to be replaced. Early on, and continuing to now, one of my major issues was forgetting words. I could/can give the meaning, the letter it starts with, the # of letters in the word....but that word is gone. The first rheumy I saw told me this could not be happening. HUH????? This can be for a day, week, month.....no time limit. Needless to say that rheumy got fired.

Brain fog used to be discounted, but in the last 15 or so years, it is an accepted side effect of lupus. It can be transient or long lasting. Each person is unique and no two cases are alike. Any rheumy who discounted it does not strike me as one who understands sle and its impact on patients. If you are discounted in this important issue, then what else do you have to put up with? Time to interview new doctors.
Sally

 

[marya0]

hi i have not yet been diagnosed i have the same problem i cant remember names places
it takes me forever to remember i pointed this out to my doctor and he said its old age , i am only 53 , and i find its getting worse

 

[JoD]

another possibility

I have the brain fog ( but I've always blamed it on having to keep track of 6 kids schedules etc) I was beginning to have memory black outs for a lack of better word. I would leave my keys in the car with the engine running and do two hour shopping. I'm more then a little fortunate that I still have the car. I never remember leaving the car, much less leave it running. It turned out I was having absence type seizures. Medication took care of most of those episodes but I still blame the kids for messing up schedules :hehe:
Joanne

 

[My2Kitties2]

Also experience "brain fog" here...some days it is only noticable when I am having a conversation and in the middle of a word I am blank....just stop talking and cant find the conversation at all for a few minutes...just yesterday had it while food shopping...it took everything in my power to just get what was on my list...so tell those doctors to go back to school and learn about lupus it is real...

 

[nettyunicorn]

i am having a problem like this too and believe it or not i forgot to tell my rhuemy and although i wrote a list i forgot this too but that was only because a crisis occurred at work and i had to rush in!
i can put things down and forget where they are 2 mins later! blame others for moving things and am totally shocked to find them in a place only i could have put them. I forget names and words or come out with something completely different to what i wanted to say!
Its horrid and scary and i try to hide it!

nettyxxxx

 

[KarolH]

I have very bad brain fog.........ask anyone who has chatted with me in the chat room. I am always asking if we met before and I can't remember yesterday. It is disturbing to me and I have also labeled it as brain fog. I hate it.

I would fire your GP and Rheumy and find other doctors who are willing to listen, really care and don't make stupid statements.

Remember, they work for YOU and you can fire them anytime.

Good luck moving forward and I hope you get to feeling a bit better.:wink2:

 

[Lady H]

Have had forgetfullness and general not remembering where Ive put things etc for a while but what i am experiencing now is different. I am assured by my work colleagues of a certain age that they experience the same through the menopause so as I am 52 its difficult to know if mine is lupus related or not. All i can tell you is this scares me whereas my previous forgetfullness never did. One daft example . . I repeatedly told the painter i wanted my staircake painting even though inside my head I was screaming staircase. Couldnt get mouth and brain to match up! He thought I had been drinking. If only!!! Good luck finding your answers.