Nonfluent speech

[wilma1006]

I have lupus. Along with all the other symptoms i am increasingly worried about my cognitive ability or lack of. My speech is sometimes nonfluent with me struggling to say the word I mean or not realising that I've said the total wrong word. This is getting me down and has left me not wanting to socialise. Is this normal for lupus?

[pmrkitty]

This is normal, I try not to worry about it. I also tell people I have a medical issue that causes my speaking and my memory to falter. They all have been very accommodating and so I just don't worry about it. It is what it is! One day at a time and don't sweat the small stuff. Have a beautiful weekend and SMILE! 😃

[wilma1006 in reply to pmrkitty]

Thank you. This truly helps. 😉

[Hidden in reply to pmrkitty]

Am so sorry your having such a hard time with your speech. It must be so difficult and I too am like this the Drs put it down to my fibromyalgia but am being tested for lupus which would explain a lot of my symptoms. I hope you have a good weekend. One day they will be a cure or treatment that will help us all. Until then all we can do is take one day at a time. 😀

[GERY in reply to pmrkitty]

Thank you klaroche I was beginning to think it was the onset of alzheimers

[Mandypandy1969]

i have fibro and the same. xx

[suzannah16]

me too, It's been becoming more obvious lately, I also have dyslexic fingers when I type, they seem to have a mind of their own when hitting the keys.

[maggielee]

I found my memory & losing words at the end of sentences fun (not).... I was finally allowed to increase my mycophenlate meds & this helped greatly, especially as I was studying for an exan... Now I find tiredness/overdoing it still effects my word search when speaking....

Try to see if you have any patterns of good days or not & what makes it get worse... ML

[KayHimm in reply to maggielee]

So true that many things affect the cognitive dysfunction. Like you, I have noticed that fatigue and sleep-deprivation make it worse. Before a colonoscopy recently when I could not eat, I was so embarrassed by my incoherence in a class that I left early. I realized that hunger and dehydration are not good either. Great suggestion for Wilma to keep a diary! K

[Serser]

Hi Wilma,

I too have lupus and can also have these difficulties at times, but for me my symptoms have improved since going on hydroxychloroquine.

If you’ve noticed it getting worse I’d get seen by your gp to be in the safe side.

I’m a mental health nurse and my job is to assess people who have problems with their cognition.

I’m like a detective looking at all possibilities such as low vitamin b12 levels, anxiety/depression, thyroid levels, potassium, sodium, infection, iron levels, diabetes - all of which can cause cognition problems and can be treated. It makes sense to get these levels checked just in case it can be easily treated.

The gp wound advise further action if you have normal bloods and are still struggling cognitively-I won’t go into that process now as you might not need that route.

I guess what I’m trying to say is that its probably worth not completely assuming that all symptoms are lupus related and that therefore nothing can be done, which may not be the case if some if your bloods are out of sync for example.

It’s worth getting a full check - knowledge is power!

I hope this helps a bit xx

[wilma1006 in reply to Serser]

Hi, thanks for your reply. I'm also on hydrocloxyquine. Had told rheumatologist about memory loss and speech over last 2 years but I have been really stressed and speech is so much worse.

I've had a dwp assessment and although struggled with speech assessor said my cognitive state was fine. I have so much stress because of this. It's hard when someone doesn't believe you.

Your right about the blood test and Drs will be making that apt on Monday

X

[Serser]

I’m glad you are going to go...it might be worth asking him to request a CT scan if bloods come back okay. Also a referral to a neurologist might be beneficial. You should get all the help you can!

Keep us updated. I really hope it’s something that specialists may be able to offer some help with.

Good luck at the doctors xxx

[Jacquie3242]

I have similar problems, which have been dismissed by a psychologist who told me if I thought I was having a mind problem, then I wasn't. It's real though and difficult -especially when totally the wrong word comes out of my mouth - eg yesterday bath when I meant bed. Tiredness makes it much worse and hunger has an effect. I also have digestive problems and recently discovered I was B12 deficient, having the injections has helped the fatigue a lot, but there is still no way I could work full time.

[pmrkitty in reply to Jacquie3242]

I'm sorry, that doctor is absolutely wrong! You can tell when you are speaking or trying to think of the right word and it either doesn't come to you or it is totally the wrong word. I'm always getting my directions screwed up too. The Doctor needs to understand...we know from wince we speak! Take care and find a new doctor, one that listens to what you're saying, even if you get the wrong word in your explanation! Kitty

[wilma1006]

Thank you, makes it so much easier knowing than im not alone. X

[Polly2Cats]

I get this when I’m getting tired. It almost like dyslexia words are muddled I can’t make decisions or concentrate. When it’s really bad I don’t recognise where I am. It might be a trigger for you to stop and rest.

[wilma1006]

This is exactly how it is. It just seems to be more apparent. Going back to Gp just to check out it nothing else. Happier know that other Lupus sufferers get the same. X

[alice_sportyauthor]

Yep, brain fog,

My children don’t even mention it anymore they just translate my miss mash into English.

Often I can’t remember anyone’s name, people I should know like children’s best friends etc.

Things like ‘can you put the airer on the washing’, are standard!

I went for dinner with friends and couldn’t read the bill whilst they were talking last week.

My rheumy just shrugs and says, your bloods are doing okay.

[lupieibbie]

Hi Wilma1006

klaroche basically nailed it. It's just another 'gift' from lupus I'm sorry to say, along with all the other unacceptable baggage. It's quite hard to accept these things but I've found that when I get mad about it, I know that I'm wasting precious energy that I need for other everyday living stuff. I SO want to punch lupus in the face every day … waste of energy?!

[wilma1006 in reply to lupieibbie]

Thank you, all this helps. X

[Paul_Howard Partner LUPUS UK]

Hi wilma1006 ,

What you describe sounds a lot like brain fog which is very common in people who have lupus. You can learn more about this and get some tips for coping with it in our article here - lupusuk.org.uk/coping-with-...

[wilma1006]

Thank you so much. This is exactly my symptoms. I've had 10yrs living with Lupus but these symptoms have been really scary. The memory has been awful but ive only once been troubled with my speech. This time its been getting worse for a few months and ive been imagining all sorts. I am seing my Gp this afternoon and will be more relaxed at that apt.