Lupus Fog?? Any one with tips?

[Hockeymom12]

Hi All! I am Canadian...I live near Ottawa, Ontario, but have found this site to be so very helpful. I was officially diagnosed this year after being a bit of a square peg for almost my entire life.

I have always had weird versions of normal events. I had the mumps for a month when I was little...but I got better...so nothing was investigated. I had very strange reactions to anesthesia....but again got better. I had 4 pregnancies, with 2 miscarriages and happily, 2 very healthy boys...but I had so much difficulty getting pregnant (polycystic ovaries. ...which took awhile to get diagnosed....because, again....I was not a typical patient). And while I enjoyed being pregnant every minute....my time as a pregnant lady was not routine and well, my deliveries were a bit of a disaster. After the birth of my first son....and actually during my pregnancy...I had tingling down my left leg and would feel like hot water was being poured on my foot. Was tested (for the first time) for MS. Had my gallbladder out and my liver shut down. Specialists thought it was autoimmune hepatitis....but again...I got better. So investigations stopped.

My ability to bounce back from the weirdness stopped sometime in 2009.... and after much testing, etc....I was diagnosed with lupus this spring after having a pretty bad flare where the blood work matched up....and unfortunately my kidneys started getting affected.

I can tolerate the exhaustion and the pain....what I can't deal with is the fog. I was always known for my memory. I have lost my ability to string words together and I royally screwed up a registration for my sons...that without a couple of angels on my side...would have ended in disaster for my oldest...a competitive goaltender...son.

My husband is a good guy....but he is impatient. He can't understand how I can forget to get something out for dinner...how I could misplace my debit card so easily...etc.

I have read some info on lupus fog. ..but it is written by someone who has never experienced it.

Any tips? Thoughts? Experiences?

Thanks!!!

[1TeiaMarie]

The fog is the worst. I always have my phone so i can take notes. An I keep pin an paper in almost every room in my house. I have to make a note of every thing and alot of the time can't spell the simplest of words..spell check helps alot on the phone.. The best cell phone for the spell check I have found is the iphone. I have had a galxey s4, iphone 5s, an now have the lg g stylo, but going to a iphone 6 by next month, plus this sight is getting a iphone app. I already filled out the thing so I'm on the watting list. Don't drive when you are foggie. I know its hard I have a 15 an a 10 year old that dont under stand why we can't go out an do every thing we used to an my husband under stands I hurt But don't under stand how bad or the fog an thanks I can just make my self get up an do what ever cause ( every one hurts) ! I'm sorry people dont under stand you but me and alot of us on here know how you feel an how bad the fog can be, I know I've for got to lay out supper alot. Hope this helps. I know it helps me to know I'm not the only one that feels this way.also Google will help lol I Google everything. Btw I found out I had lupus this past april I'm still learning alot. (YouTube it great) an I'm in the U.S.

[Paul_Howard Partner LUPUS UK]

Have you been investigated for Antiphospholipid Syndrome (APS)? This can often overlap with lupus and one of the symptoms it is well known for is causing 'brain fog'. Generally it is treated using blood thinners such as aspirin or warfarin.

[Hockeymom12 in reply to Paul_Howard]

Thanks for the info. No...I haven't had the antiphospholipid test. However, I am on aspirin because of a possible TIA I had in January. Will check with my rheumatologist in October...my next visit...

Thank you !!!

Christine

[nerossa]

Hello fellow Canadian and Ontarian! I get very foggy. Short term memory sucks such as what day it is, taking food out to thaw, appointments. I swear my keys walk away because I am very careful. I created systems to help me. Notes on fridge, lists on my phone (passwords...egad!) I am negative for the anti-phospholipids but listen to Paul...he's got a going on in the smart advice column.

[Hockeymom12 in reply to nerossa]

Hello fellow Canadian!! Isn't this site wonderful!

I am going to chat with my rheumatologist about Paul's suggestion. This past couple of months have been really frustrating....I am thinking of recording all my conversations and put strings on all of my keys!

Thanks for the feedback....so appreciated.

Christine

[nerossa]

I read, recently, that sometimes switching from Plaquenil to Quinacrine (Atabrine) is good. It does not affect the eyes, and is helpful for fatigue and cognitive impairment associated with SLE. I also think you can take them together. I had heard that it isn't available generically, in Canada, but a compound pharmacy can prepare it. Runs about $35 a RX. Maybe ask your rheumy about it - it won't negatively affect you and it might help?

[Hockeymom12]

I will ask...have been on the max dose of plaquenil for about 2 years. My doc has told me that he will never out me on prednisone....and I think we have discussed methotrexate....but nothing else. The only med changes I have had were naproxin to celebrex (naproxen affected blood pressure) and I changed from Tecta to Nexium because my esophageal ulcer stopped responding to the tecta.

I don't know about wanting to add more pills...to be honest, I would rather have to have needles! ! I hate swallowing pills...lol!

[Hollydebs]

Hi I too suffer from brain fog and at first it really embarrassed me, still does to a point. I'd be talking to someone & would completely forget what I was saying or would forget the main word I was about to speak. The amount of times I've said during a sentence "oh you know what I mean" then laugh it off, is untrue. The other side is that I forget I did something. Couple of the worst moments was when I put some potatoes on the stove & completely forgot I had done this & burnt the saucepan out. Wasn't until smoke alarm went off I remembered. Or the time I ran water in the sink for dishes turned away to do something else, again forgot & nearly caused a flood.

I have an iphone which is invaluable. I use the calendar for important dates & appointments etc. I use the notes for anything need to remember & jot down. Bit more tricky when at work as not allowed mobile use but thank goodness for sticky post it notes, great invention, I write everything down. At home now re kitchen whenever I cook etc. I use a kitchen timer so when it goes off it reminds me was cooking something so that helps also.

It is really important to make notes to yourself. Sounds nutty but believe me it's a godsend and very vital x