Lupus attacking the brain

Hi, ! First off, being newly diagnosed can be a pretty overwhelming time, so please don't hesitate to reach out if you need any extra support! And, I understand how scary it can be when you realize Lupus is possibly affecting your cognitive health. Please know you are not alone in this and we have a large community that can empathize with what you are going through. I hope some of our members see your comment and chime in with their personal experiences with Lupus and brain health. Also, here's a link to some information on the this topic that you may find useful -- https://lupus.net/symptoms/brain-fog. You *can* help minimize your brain fog, so don't despair! And, if you haven't done so already, definitely talk to your doctor about your concerns, too.


I hope this information is helpful and please do reach out if you have any more questions. We're happy to help in any way we can!


Best, Erin, Lupus.net Team Member.

Hi there! I don’t have diagnosed brain involvement. But I, like many, deal with brain fog a LOT. For me that means just feeling foggy. Like it’s hard to make sense of things. Or I have trouble expressing myself. Sometimes that looks like knowing what I want to say, and just not being able to get it out. My family now just tries to figure out the word I’m missing. Sometimes it’s helpful. Other times I hate it. Other ways the fog impacts me is forgetting to do things. I’ve gotten better at dealing with this by keeping a running todo list in the notes on my phone. So as soon as I think of it, if I can’t do it right then, it goes right on that list. There are a lot of other symptoms but I won’t make you read them all lol. The days when it’s bad I just tell those closest to me that it’s a bad fog day or that the fog is thick. That way they know what’s going on. I know as someone newly diagnosed lupus can be scary. Just try and take it day by day. Because every day may be different. I’ll be praying that your MRI doesn’t show any thing major, and it’s “just” symptoms of lupus, like brain fog. Even though I hate using the word just, bc lupus is much more. But I hope you get it. Please let us know how the MRI comes out, if you are comfortable sharing that with us. Big hugs! Amber (lupus.net team moderator)

Over time, because Lupus is chronic, I've tried different methods of attacking brain fog. I like visual cues to stimulate my thoughts. Tai chi also clears out the fog, at least for me. I memorize and repeat, repeat, repeat activities and most importantly, add new activities to my daily routine. Currently I am learning how to play an instrument that I never before played. I will never be an expert. So what? I'm also working on different exercises that are outside of what I did in the past. For this I get some pushback. "If you are tired, why are you adding more things to do? Why don't you rest?" Of course I rest, as much as I can. But adding new challenges helps to wake up my brain and reduce the fog.


This probably would not work for everyone, but after years of frustration, I find that it works for me. I combine a specific diet, exercise program and brain stimulating activities to keep me going. Still, I find people like to end sentences for me because I lose a word or pause when I interact. At this point, I let them do it, praise them for their comments, smile, and move on. I empower myself and don't depend on anyone else to provide that for me.


I wish you well. As time goes on, you too will find a combination of strategies to attack the challenges. You will feel frustration sometimes - okay, maybe a lot. Here is a hint when speaking with a health care provider: tell them the positive actions you are taking and how they are helping rather than telling them only about the difficulties. Their response is generally to encourage other positive interventions. Of course your doctor needs to know what is happening to you but how you approach your description shows if you are a fighter or plan to retreat. Don't retreat!