Lately I've been feeling really dumb. I can never remember anything and I'm having a hard comprehending things that I know I should be able to understand. Why do I feel like this? So I read a few articles on this thing called "fog brain" , "brain fog" whatever they call it. Has anyone else felt this way? Am I the only one who feels worthless? I don't know if I'm just paranoid but I think other people (society) feels like I'm stupid whenever I open my mouth to speak because people give me that look like they're not understanding what I'm saying.
My vocabulary used to be great. I could think of different words and actually know the meanings to them. BUT now, I have trouble with the definitions of many words, simple words.
If you're experiencing the same thing or similar, please feel free to share.
oooooh yeah. I have fog brain all the time. It is much worse now that I have trouble with my adrenal gland. I have to jsut relax and take it in stride. what do you do about yours? and tricks ?
@Janice: I just have to take a break from whatever I’m doing and relax. Then after I gather my thoughts I go back to what I was doing. It just irritating to know that I never used to be like this until Lupus came into my life, so that’s what makes me frustrated.
I know I know—i feel your pain and frustration. i dont know about you but this site has been very helpful for me so far—just knowing i am not in this alone…and this i am not losing my mind or getting stupid (as you say lol)
i believe that if we put our minds together we Will be able to make great strides…one turtlestep at a time
hmmm, already I see a pattern or key word: relax.
yesterday i did a breathing exercise for 20 min and i felt much better afterwards (except for the upset tummy, excruciating leg pain and numbness in my face LOL!) but better in spite of all that.
I am using some bi-lateral pain management meditations as part of emdr therapy and i absolutely think it is working…i will get the name of some of them
I have some problems there too, though it could also be a factor of aging. I have been using a cognitive development program called lumosity.com and have found it helpful for improving cognitive function. I also do crossword puzzles and a number of silly online games that I actually think help.
Fog Brain revisited… yesterday when i was leaving my daughter’s house I saw a silver car in the driveway and thought, “who is parked in my spot and where is my car?” scary news: it was my car.
The same thing happened when I was visiting my son. There was an article of clothing in my bag and I said, “This is not mine…” But it was and had been for a long time. But for some reason, every time I see it I think it belongs to someone else and just into my things by mistake. I tried to tell the docs about it, but they just get that glazed look in their eyes and move on to the next topic. I wonder if it is “just” inflammation in my brain.
PS there were other incidents as well…like putting my pants on backwards (they have a zipper for cryin out loud) and not realizing it till I got home after doing errands. Makes me feel crazy
Sorry Janice I know this us serious but the pants w/ zipper story gave me a good laugh. Thanks I needed that!!!
janice said:
Fog Brain revisited… yesterday when i was leaving my daughter’s house I saw a silver car in the driveway and thought, “who is parked in my spot and where is my car?” scary news: it was my car. The same thing happened when I was visiting my son. There was an article of clothing in my bag and I said, “This is not mine…” But it was and had been for a long time. But for some reason, every time I see it I think it belongs to someone else and just into my things by mistake. I tried to tell the docs about it, but they just get that glazed look in their eyes and move on to the next topic. I wonder if it is “just” inflammation in my brain.
PS there were other incidents as well…like putting my pants on backwards (they have a zipper for cryin out loud) and not realizing it till I got home after doing errands. Makes me feel crazy
it’s ok to laugh…i did when i went to bathroom and wondered why my pants didn’t look right. (lol)
laughing is good. what else can we do when it gets as weird as that.
(((hug)))
Laughing has to be the cure....I find things so much more easier when I just laugh or have one positive comment to say, I Just take things in stride, Janice. I am concerned your doctors are not taking your complaints serious, is there a way you can go to a lupus specialist, other than a RA? I found an endocrinologist whom only sees lupus patients in MD.
I am amassing doctors whom specialize in my disorder instead of their specialty (if that makes sense).
It may help to call them and get a consultation about your symptoms to see if there is another treatment or course of action you can suggest to your doctors. We have to advocate for our health, if the doctors don't understand, we have to make them understand!! This is our health.
I am a fighter, as you can tell, I bugged my doctors for 3 years telling them I did not feel well and went to multiple specialists whom kept telling me "your fine, all your tests are fine, this is just a localized infection" or "your asthma is acting up" I did not accept those answers, when the freaking inhalers did not work!! I finally went to my GP and told him, "I don't feel well, and don't tell me its asthma" and he ordered a panel of tests and in that panel was the ANA test. Thank goodness I pushed or I would have another useless inhaler.
I know things will not always be great, but I am committed to finding solutions that may be "outside the box" for my health. (((hug))))
janice said:
it's ok to laugh...i did when i went to bathroom and wondered why my pants didn't look right. (lol) laughing is good. what else can we do when it gets as weird as that. (((hug)))
You know, I was so glad to hear from you tonight...I had been thinking of you and wondering how you were doing. I saw your pic on my friends list and though, "I wonder how she's doing." and then I saw your post about having dinner out for the first time in over a year.
I would like to see a specialist, but the closest one here in in Albuquerque and that is 5 hours away. The problem I have with a trip that long is that some days when I am having issues with my adrenal gland I can't stay awake. I lost my neurologist because last year I was too sick to drive to Lubbock, which is only two hours away. He wrote a letter to me saying that our ...how did he word it?...IDK, something about how he was terminating our relationship because I had missed too many appointments. I always cancelled in advance except for the time I was in the hospital--but even then I called as soon as their office opened and told them I couldn't make it because I had vasculitis and was in the hospital. A few weeks later I got his letter in the mail. I was devastated because I have had such a horrible time with migraines...and then with lupus headaches. And he was treating my for RLS too which is so awful I would rather die than feel that pain night after night. It is torture because it doesn't start (usually) until I am so exhausted I start to drift off to sleep and then bam! it hits and it feels like metallic worms are writhing my legs (sometimes elbows too.) He treated me with requip which was a miricle drug for me, but i had to keep going higher and higher and now i am on take 12 mg per day which is high (I guess) but it works. Now my gp wants to take me off of it bc its such a high dose and I am fighting that tooth and nail. I can't go back to that torture chamber.
Did you see that post dee sub,itted about writing a letter to dr. oz to get a show together about Lupus and all the problems-in-common we have? She wants us to write letters. I am working on one now. Maybe if they saw it on tv the docs would pay more attention (maybe they are too caught up in fighting insurance co they don't have time to read all the medical journals.)
anyway, thanks for your concern and for reminding me that I do have a warrior inside who is wiling to fight for a good cause. Until LWL my own case didn't seem like a cause worthy enough to fight for. Now, because of people like you and annacai and suzie and scott and jc, and omg I would have to list everyone...but because of people who struggle and people who care and who create this network of powerful something or another I am feeling more inclined to fight for my health. Because of you guys I have courage when I talk to docs. I don't let them bully me into thinking I am crazy; I don't let them dismiss me do easily. I go in armed with information and the support of LWL and I am now a force to be reckoned with.
whew...I didn't mean to go on so long.
Anyway, I am glad the meds are working!! And I will take your advice and try to find a way to get to a good doc.
We have to fight Janice. Its our life and its ours to have. Did you try googling specialists in your immediate area? or going to your local hospital and meeting with their patient advocate or specialists to get referrals to specialists in your immediate area. This is how I am started the search and I look for leading medical experts in Lupus to assist me.
there is a doc who says he specializes in Amarillo–2 hours away and i am waiting to see him. i have a few hoops to jump through before i can get an appointment. I’ve already jumped through two…one more to go. it will take 6-8 months (months!) to get an appointment once the ref goes through.
I love your fighting spirit! It us contagious and I caught it! woo!
Welcome... Jump higher and call constantly and keep good records of whom you spoke too, time and gist of conversation. Good record keeping might help push up the appointment when they know you are paying attention to the conversation and their is accountability.
I am soooo glad you caught the fighter spirit... Let's keep it going!!
Great advice. Can you post this advice on a discussion about how to advocate for yourself and maneuver the maze of the medical world when so many health care workers are either uninformed or apathetic?
This has been happening to me for a while now, which is why I started my search with a neurologist over a year ago, who sent me to a rheumatologist after some lab work. Finally after a year and a second opinion by another rheumatologist with several more blood tests, I am being treated with 400mg of Plaquenil daily. Some symptoms are less but others still there, like fogginess and very poor memory and retention, this is how I combat the dreaded Lupus Fog: I slow down and collect my thoughts, carry a note pad at work and write things down that I would otherwise commit to memory, double check everything I do, leave notes for myself in strategic locations like the front door or steering wheel.
I like these coping skills. I need to employ some of them m’self. I arrived at my doc’s office today early…by more than 24 hours lol good thing he was there and agreed to see me so i would not have to drive there and back (4 hour trip) two days in a row–and I have to take extra prednisone to stay awake for that dive bc my adrenal glands are sulking
James said:
This has been happening to me for a while now, which is why I started my search with a neurologist over a year ago, who sent me to a rheumatologist after some lab work. Finally after a year and a second opinion by another rheumatologist with several more blood tests, I am being treated with 400mg of Plaquenil daily. Some symptoms are less but others still there, like fogginess and very poor memory and retention, this is how I combat the dreaded Lupus Fog: I slow down and collect my thoughts, carry a note pad at work and write things down that I would otherwise commit to memory, double check everything I do, leave notes for myself in strategic locations like the front door or steering wheel.
I totally know about brain fog. I thought I had a stroke. I hadnt been to the dr. for a first visit, and was a little scared. I hid it from my family. So they wouldnt worry. My brain feels better right now, but I cant spell worth a darn. Where I was an English genuis. Now, Im almost dislexic when I type. I have pay more attention to what I type, and edit all of it. It is very frustrating.
This happens to me on a daily basis! I go into a room and forget why I was there, I’ve loaded dirty dishes into the fridge instead of the dishwasher, one day I drove to work and ended up at my old job I hadn’t worked at in over 5 years! I have a horrible memory and lose whole conversations I’ve had with my family. I have to make a consorted effort to focus on what I’m doing or saying. It’s horribly frustrating for me and vastly amusing to my kids!