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I was going to start a new topic on this very thing, beause I am scared of what is happening to me. I do not know what is causing it either, but pretty much I think that it is the disease and not the meds, because it was there before I started on this most recent medicine for Lupus. and the only meds that i take specifically for Lupus is plaquenil. maybe meds can make the brain fog worse, but I don"t think that it is causing it.
Do other meds for other problems cause the brain fog? Maybe. I honestly do not know. I don't think I have ever told anyone but the people here at this forum, my fears about this brain fog. I was afraid that it was alzheimer's, but realize now that it does not matter what it is called, the problem remains. And the symptoms. I think brain fog might not be a strong enough label for it. I feel unable to attach my brain to myself. i have written three checks to time warner for cable, and only one has been cashed. why did I write three checks? I can't remember. I can't think.
but it is like a fog between my incapacitated mind, and my capable mind. for me it is terrifying. afraid to talk to my doctor about it, and afraid not to do it.
One thing about it Firebabe is that you have probabably arrived at the best place possible to get the answers you seek.
It definitely can be both. I know I had brain fog with flares before I was ever diagnosed or took any medications. For me, prednisone completely gets rids of any brain fog and all other symptoms i've had. I've not taken pred for some time now, but i've been taking Plaquenil for 3 or 4 years and that does not cause me any brain fog. However, I also have spine problems, widespread muscle spasms & cramps, and widespread nerve pains and take a muscle relaxer, nerve pain med, and milder painkiller. These meds sure cause brain fog! I am also currently in school again (vocational/technical) and had to start taking these meds due to severe pain & symptoms. The meds do help alot but at first it made things worse to concentrate and study. But my PMs worked with me and we adjusted my doses so that my mind could concentrate more. Plus, after so many months on these meds, they don't affect me as much anymore. And thankfully, even on these meds, I was able to do very well in classes.
But i've had some brain fog in the past (when not on any meds at all) that was way worse than what all my current meds cause. I've had times where I was listening to someone, but could not comprehend what they were saying; i've constantly misplaced things or unknowingly put things in weird places (like putting a phone in the fridge, etc.); I've driven places and not realized where I was going or how I got somewhere, etc. I don't know...since being on Plaquenil, I haven't had such bad brain fog, so maybe Plaquenil helps that too?
Lynnwood, Co-Moderator: Lupus ForumSLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, ValtrexLinks: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions
I think it is mostly from the disease of lupus. In fact, I took part in a study at Buffalo General Hospital in 2006 that was looking at that very concern, cognitive impairment in SLE. I am just now starting to look for the research data to become publicized. I went to the MRI scanner several times, and took part in memory tests. I had a sense I 'flunked' cause I was flaring at the time. They drew blood and took pages of hx. I have CNS targeted lupus, and difficulty with the ability to multitask like I used to was one of my first big worries. I had a sense I was losing my mind, and with the overwhelming exhaustion and falling that forced me to fight the dx. of menopause, and then, oh gee, are you sure you aren't just depressed........ when I read the term brain fog when I started researching lupus, I had an epiphany! That's it! And I love to read, so not having the mental clarity and focus to read a book was scary. The mental fog is managed best when I force myself to rest. When I let myself get too exhausted, then my thought process ability is worse.
Thanks for sharing your experience with the Ginko! I had another friend mention Ginko Biloba regarding memory. For me - the brain fog seems to be a result of the illness - I never had these kinds of problems before. I do believe chronic pain and the stress of trying to function in the face of all that comes with it creates a huge energy drain - espeically with sleep dysfunction. Fibro folks all talk about "fibro fog". I also think dietary changes away from foods that are over-processed and contain way more chemicals than we like to even think about, let alone can identify - well - helps everything!
Please keep posting about your progress - I have been trying to manage my symptoms as naturally as possible also (high ANA-still in diagnosis limbo with the AI stuff) though I also recommend discussing it all with your rheumie/doctor.
I'm having trouble with brain fog as well. I, too, cannot recall words I'd like to use. I will have the concept or definition in mind and cannot come up with the word. It's very frustrating as I have always prided myself on my verbal abilities. (Pride comes before a fall. :))
I also have difficulty writing and typing sometimes. I will misspell words that are simple and be shocked when I proof my own work. (Again, I'm a former spelling bee winner-the one everyone else asks how to spell words.) My hand will sometimes not make the marks I'm intending to write. It's like my hand will not cooperate with my brain. It's a good thing for humbling me, but it's still distressing.
Brain fog and sleep problems are related to the diseases first and the meds second, doctors usually shrug off these two problems attributing them only to the meds, but these were the first clear signs that something was seriously wrong for me well before i took any medications. I did the best when the prendisone was at 12,5 and the worst now at 5,0. I know that the pain makes me more tired, I know that the fear of what all this non thought clarity is doing to me, my work, my life my future and therefore that of my daughter and this adds stress and depression to the whole situation but I am sure that it is fundamentally caused by the disease itself. I recognize a lot of the symptoms which many of you have described here: difficulty with finding words, attention span problems (i no longer can read anything longer than an article, I use to read a few novels a week while working a 50 hour work week and being a very available mom) All of these changes started before I was on the meds.And they are clearly worse during flares. There is always a lapse between when i start to feel badly and I can get to the doctor and he ups my dosage so to me this confirms, disease first meds second
Welcome to the forum, if I have not already said this.
I feel the same way about the brain fog, and meds vs. Lupus and other autoimmune disease. I think the meds can worsen the symptoms, but I believe that Lupus, or other diseases causes the symptoms.
Sometimes I drive to pick up my grandchildren, and find myself in places and wondering how I got there. or the familiar route to pick them up, looks unfamiliar. and sometimes I try to say or write a word, and the words that come out of my mouth are not the words I meant to say or write. I used to be very good at grammar, spelling and meanings of words, but this ability seems to have went on vacation without me.
Have someone take you to the hospital Imediatly!
thank you for Dels. I may have hurt myself, maybe, but today I will see the doctor. two of them hopefully. I found that I can use simple sentences. I think I will be better by finding my all of you. Writing to all of you I think is making it better. speech therapy I am think that I may have. maybe some home health people for me to help me awhile.
I made myself voice of words. It is simple to speak about simple things. and it will come back to me. By the time I had my right arm doing things, the doctor found six weeks later when he told me that he had the stroke in 2002.