Hi every one,
I'm still fairly new to the SjS forum, even though I've been suffering for over 8 years, with no medication and still awaiting my first appointment with a rheumy. I take it that the term "Brain Fog" which I have come across a lot, is the feeling that my sharpness of thought as gone and my brain is in a dream and my head is in a world of it's own. I get these feelings when I'm tired, fatigued and suffering general malaise. do many of you feel the same.
Kind regards
Bill
Bill, I'm sure everyone has their own version of brain fog and you will soon be reading versions with symptoms you recognise and others you're glad not to know yet! What you describe sounds like how I feel - sort of blunt, disconnected and vague, lacking in memory and recall generally. I'm hoping the plaquenil I started last month will help.
Good luck to you in sorting out your 'fog' and all the otjher Sjogrens 'gifts' - keep posting, Ailsa
Bill,
It seems most people with Sjogren's complain of brain fog. It is especially scary when you've always been an annoyingly detailed person. I'm sure some others will come along and share thier experience and you will some how feel a little better knowing you are not the only one. At least it makes me feel a little more normal. :)
Anna
Hi Bill :)
yeah - brain fog is really common. It's like thinking through treacle. Paperwork that used to take half an hour turns into a two hour slog. Memory retention goes out of the window. ::) I even forgot how to get out of my car one day. An initial test for possible dementia left me in the clear I'm glad to say - but still be-fogged. Plaquenil helped me a lot with it.
Hope its not too lo9ng till you see the rheumy.
Take care - Scottie :)
Bill,
Welcome to the world of the mentally confussion, your description of brain fog is spot on. I went to a neurologist to help me with my brain fog which was helpful, but still have the occasional loss of memory and may have to increase my medication.
Hi Bill,
My description of brain fog would be this: I am normally a very detail oriented person and can generally put tasks into order and accomplish alot. When I have brain fog or fibro fog, I notice that when I speak words can come out backwards. Such as turn left may come out turn right but I mean left. I catch myself doing this alot somedays. Also I will start to say something and suddenly I don't know the exact word that I need to say, I have to stop and rethink to remember it. Tasks which normally come easy such as certain codes used for work I have to stop and think. Things that I usually can recite off the top of my head with ease. I was so used to being able to memorize all the little details and now I have to stop and rethink and second guess myself alot.
I have been on plaquenel and it has been a while since I've had trouble with the fog. But I sure do relate to how you feel and what you're going through. Best of luck to you!
SassieCat
Hi, I get this too, where the wrong word can come out or the first letter of the second word gets put at the beginning of the first word...and then I can forget a word or name, then remember it seconds later :-[ It's the main reason I don't teach full time :-X
I have thought about dementia as well, but I'm not willing to go down that road quite yet :)
Cheers Lesley (NZ)
Dear Bill,
Brain fog - yep, present and correct, even with Plaq and I still teach with it. My worst time is planning my teaching when my mind just goes completely blank. I have got slower and slower over the past few years but I now know that when I am in that state I have to walk away for a while and think about something else. You will learn to cope with it (if you haven't already - 8 years is a long time especially without meds) and sometimes it will put you in hysterically funny situations. Well they will seem funny later!
Beverley
Not being able to "find" words seems to be a big problem for me also. It's funny, I have always had a good vocabulary. I liked looking up rarely used words and use them. My husband would call me a walking thesaurus because I always knew an usual word that I could use for a common one. Can't do it anymore. Now I can't even "find" the common words.
I also lose my train of though mid conversation a lot. That is a tough one because I feel like I'm trying too hard when I'm speaking with someone that I'm always trying to think of what I need to say instead of listening to what they are saying. Then when it's all done, I have no idea what they were trying to tell me.
And driving too... good thing I don't go to many strange places, my autopilot brain has helped me get home lots of times when my mind just wasn't functioning right. Scary!
WOW! The more I read on this site the more I see myself. Forgotten words and names. Going downstairs and forgetting why I went in the first place. Need to retrace my steps to jog my memory. Tonight one of the teens found an empty jar in the frig that I thought I put in the trash. Didn't know what to think about the mind. Nice to know it's not just me. Roxanne
If it weren't for brain fog they'd say i had no brain at all.....
JJ
I went to my reumy yesterday for a 2:pm routine appt. I had to pee pee so bad I thought I can not hold it until after my appt to give the traditional urine sample.
The lady at the reception desk looked at me then looked at her computer and said you have an appt May 4th at 2:pm. I smiled at her and thought "Brain fog moment"....... Oh sweet relief, I get to go peee. Then I went shopping, good day anyway.
kimbo
Kimbo,
who says brain fog blocks innovation?!
My latest brain fog moment. I've forgotten my bank card PIN. I've only been using it for the last 25 years! Duh!
Scottie :)
Scottie
I did that too - I keyed in my buirglar alarm code and wondered why ti wouldn't give me any cash ;D
Kathyx
Hello all!
I am new to the forums and have been trying to read all the old and new posts and felt compelled to respond on this one. I was told I had a connective tissue disease 15+ years ago and went through the steroids, plaquenil, Imuran, and Methotrexate which was what lead to my respiratory issues:( I recently have been quite ill again and finally went to my primary as I avoid the rheumy (bad) and my ANA, sedrate and SS-B titers are all quite elevated. I have been lost for a better word to find yet another medical problem. This brain fog thing made me laugh because I am normally in charge of everything at home and work and lately I feel like someone is squeezing out my IQ! I say Mr. for Mrs. and use the opposites for so many things that is if I can even find the right word or phrase. I hope to get that not so alone feeling often by coming here as I have since I began reading.
So thanks and Hello!
Brownie
Hello Brownie
Welcome aboard. If you are a'foggy', you are definitely in good company.
Have you considered starting anew topic with a little info about yourelf? That way you will get more people seeing your message, and popping by to welcome you.
Kathyx (UK)
Hi, Brownie. Yes, you will have plenty of company in the brain fog department. It seems most of us have it and it drives us crazy.
Again, welcome.
Anna
Hey Brownie!
Glad to meet you and commiserate on the cognitive issues that come along with Sjogren's Syndrome!
Ugh! My latest thing is feeling overwhelmed when I look at a mess that needs organizing, like a drawer or closet. Honest to goodness, I freeze up with anxiety and confusion.
Best to you,
Janna
Oh yes, count me in. Many of the earlier posts apply to me too, so much so that when my husband forwarded a neurological test that was going around the internet, that's supposed to tell you if you need to see a neuro for brain problems, I froze. I was really worried about taking it, especially since my husband said it was so easy. Well, I took it and it really was easy. That tells me that we can have brain fog but still not have really serious neurological issues. At least I hope that's what it means!
Hi Brownie :)
welcome to Sjogren's world from one foggy sjoggie to another! ;D
Take care - Scottie :)
Hello and welcome from me, too, Brownie.
We all can tell some interesting "lost in the fog" stories, but the great thing is that, here, we can actually laugh a bit about them, because no one is looking at us like we've totally lost it!
There is hope though, at one point I had lost 10 IQ points, and more recent tests show that I'm back up 5-7 points, almost back to my old self, just older, dryer, and less likely to do anything that requires any physical energy!
Hi Brownie,
Let me also welcome you to the SJS World! Please do look around as this is a wealth of information here that you might find interesting.
Yep, a lot of us suffer from the dreaded "brain fog", to the point that I'm on my third neuro looking for help...so far, it's gotten better, but there are still days that I just want to go back to bed and pull the covers over my head if I could only remember where my bed is (scratching my head). ;)
Again, welcome and I hope to chat with you soon!
Take care -
Patze
Welcome Brownie,
I think fog is a pre requisite for being on these boards.
Beverley
I was diagnosed last year with Sjogrens, but I now realized that I have had it for the past 23 years! I am now 35 years old. I get "brain fog" so bad that I can't concentrate and I have to go lay down. This wouldn't be so bad, except that I have caught several things on fire in the kitchen and now my husband is worried. To make matters worse we just moved and I am can't get in to see the rheumatologist until August! When I mentioned it to my GP (her husband is the rheumatologist that I'm waiting to see) she acted like Sjogrens rarely acts on the nervous system. I meant to bring her an article about Sjogrens and the nervous system but I forgot it at home! I am already on plaquenil, salagen, singulair, and just finished a 6 day pack of predisone! I could just cry from the stress!
Jody
Hi Jody :)
Welcome to Sjogren's world. Any chance of asking if you could see someone sooner than August - like if there are any cancellations? Sometimes writing to a doc's secretary can get results.
Brain fog is really frustrating. My very worst brainfog was when my thyroid went underactive and that all seems to be tied up with SjS too. Have you had your thyroid tested to see its OK? It can go from being OK to being all wrong in a few months - so its a thought.
This is a good place to share frustrations and just vent generally. Venting totally acceptable - as are all questions. :)
Take care - Scottie :)
Well Bill. I guess you are well aware of what brain fog is now!!!
Just don't forget to come back and let us know how you go on...
Welcome Brownie, no cures! but you will find lot's of tips and advice here with us,
Jodie, sorry you are so stressed with this thing.. Why not see your GP again, and tell her how you really feel , she could prescribe a sedative type drug to help you over till August... it's a long while till then to be in this uptight condition , Go on try it!!
Luv to you all, Dolly.
I just found this site today and have been reading it for hours. I am so glad to find that this "Brain Fog" thing isn't
just me. I thought I was getting dementia but every once and a while I can think and respond like I use to. It is
depressing when you are with friends who remember you as quick and funny and you just can't be anymore. The
other day I was joking with my Rheumy about how my wife just left me and is trying to take the kids from me and
I was just in a five car accident with my 2 week old truck and hit by a uninsured motorist and I had to sell my 3 day
old motorcycle because my back was so hurt from the accident. I looked at him and said "At least I have my health".
He thought that was pretty funny. You have to keep your sense of humor with this stuff or it will drive you nuts.
Welcome Jody and Pmortimer, I'm glad you've both found the posts here helpful, it's very empowering to find out that our symptoms actually exist, and other people have them!
Pmortimer...if anyone on earth needs a sense of humor, it's you, and I'm so glad your's in intact!
Jody, Welcome to the site. Kitchen timers. I have several that ring for a long time and are loud. Don't know what I would do without them. Also, I keep a magnet hanger on the inside of the front door that I can put notes on - candles, oven, etc. August seems like a long time to wait for a Rheumy appt. Scottie has good advice, try and call and ask to be put on the cancellation list. Sometimes it helps.
PM, Welcome to you. Keep your good humor it will serve you well.
Roxanne
KYMOM, You are so right about kitchen timers. I used them for at least 30+ years. I would have to carry it from room to room and finally bought another one so I didn't have to haul it around so much. I could lay down and take a nap or rest for a short period of time and not worry about oversleeping.
I have used one in so many ways and it really helped make my life so much easier. At this stage I have found that I need to stay in the kitchen much of the time or I will burn things. My timers are all broken and the last one didn't last very long. They don't make them as well as they used to.
It helps to just learn to plan your life around your "issues". I had the brain fog for so many years but most of the time I was OK. The thing that the brain fog did to me was increase my anxiety level and decrease my self esteem. It would have been nice to know that I was sick and that it "wasn't all in my head" as the doctors say. It is hard enough being ill and living with the emotions that go with being not listened to or believed but add the brain fog and things get more complicated. And yes, a sense of humor saves you from going crazy. Irish ;D
Hello.
I too am relieved to read this posting about 'Brain Fog'. I am yet to be formally diagnosed but my I have had a positive ANA speckled 1:640 titre and a positive SSA (Ro60) which I understand is a common link to Sjorgrens. My doctoris currently investigating Lupus/Sjogrens overlap.
The last six months or so I have really noticed how forgetful I have become and that I do really silly things and my words come out muddled. I even said to my husband that I am worried I have the onset of Alzheimers! I constantly find myself driving down the road and suddenly realise that my mind is elswhere and I have gone completely the wrong way! At work recently I had to book a flight to travel interstate. I arrived at the airport on the morning of my flight only to be told that the flight I was booked on was for the day before! I felt such an idiot when I had to tell my boss that I had booked for the wrong day. Regarding words coming out wrong I am a shocker! Only this weekend I was at my sister in laws and I called out to my son to put his trainers on, instead I shouted out 'Come and put your tights on'! My sister in law just looked at me and said 'tights?' with a very strange look on her face. I hadn't even realised i had said tights instead of trainers! I also find at work or at home that alot of the time if someone is talking to me I completely switch off and start thinking about other things, my concentration span is terrible and it really is affecting my work. I have also left the car handbrake off and gone to get out and realised that is starting to roll down the road!!
I don't normally feel that ill but today I feel exhausted since I woke even though I thought I had a good nights sleep for a change. I feel like I could go to bed and sleep for a months and my head feels so fuzz! I am going for tones of blood tests tomorrow including a ANCA (i think) so hopefully the diagnosis will come soon.
I decided to read thru the last couple of posts and just wanted to say what Irish said is exactly how I feel. "Brain fog has increased my anxiety and decreased my self esteem. I'm trying to keep my sense of humor and just go with it but sometimes it is so embarassing when you say or do goofy things around your friends. I really don't feel like going into a 15 minute explanation of why I said or did something. It sure helps me to know that so many others have the same problem.
Anna
I also put the wrong words in sometimes and also can't always complete what I want to say. I must pause and then state what I wanted to say. It is a real bummer! I wish we did not have to have the brain fog. It does make one wonder about their own self esteem...seems I am always trying to be on guard. What a great place to vent and hear from others. :)