Tips for Managing Lupus Fog

Lupus fog, also known as brain fog, is a common lupus experience and includes a variety of memory and thinking problems, like forgetfulness, misplacing things, trouble thinking clearly concentration problems, or trouble remembering words on the tip of your tongue.

Have you ever have laughed over doing something like sticking your keys in the refrigerator and the milk in the cabinet? If you're an avid reader, you might have cried after trying to read a book because you couldn't concentrate long enough to get very far. Maybe you've felt embarrassed when speaking to a friend or colleague and suddenly couldn't remember the words you needed to finish your sentence. If you didn't have these experiences before lupus but are having them after the onset of the illness, then it could be lupus fog.

When people first experience lupus fog it can be scary and people fear they are experiencing dementia. But, lupus fog is not dementia. And unlike dementia, lupus fog does not get progressively worse over time. Like other lupus symptoms, lupus fog tends to come and go. Doctors are not sure what causes it and there is no reliably effective medical treatment for it.

Lupus fog is not only a cognitive experience but an emotional one, which includes grief. If lupus has made it difficult for you to think and remember like you used to, it can challenge the very core of your identity. Since it impacts your ability to think, remember, and concentrate, it can interfere with many parts of your life. It only makes sense to feel grief, sadness, and frustration. As you move through your grief, there are some practical steps you can take to help manage the symptoms.

Log Your Symptoms and Tell Your Rheumatologist

Lupus fog relates to memory loss.
Lupus fog relates to memory loss. JGI/Jamie Grill/Getty Images

As soon as you start to notice a change in your thinking or memory, write these symptoms down.

  • Write down the date, what you were doing, and what happened.
  • Be sure to bring these notes with you to your next rheumatology appointment.
  • It's important for your rheumatologist to know what symptoms you are experiencing. They might first check your medication to make sure none of them are causing memory or thinking problems.
  • If your symptoms get worse, be sure to tell your rheumatologist. They might send you to a neurologist or neuropsychologist for further testing and to rule out other conditions unrelated to lupus fog.

Write It Down

Close-up of the spiral binding on a notepad : Stock Photo Comp Add to Board Close-up of the spiral binding on a notepad
Claire Cordier/Dorling Kindersley/Getty Images

One of the best habits to get into in order to combat memory problems is to write down as much as possible, names, appointments, and other important dates, details of conversations, and other information that you need to remember.

  • Write information down as soon as possible. So much information is lost when we convince ourselves that we'll remember to write something down later. Don't take a chance. Do it right away.
  • Keep a notepad and a pen with you at all times -- in your pocket, bag, or purse.
  • This includes at bedtime.  If thoughts arise while you're in bed, don't interrupt your sleep process by getting up to find a notepad. But most people, when tired, are not going to want to get out of bed to do this, anyway, making it more likely that they'll forget what it was that they wanted to write down. Keep a writing tool by your bed.
  • Keep your notes in the same one or two places so you don't have to keep track of scattered pieces of paper later.
  • Unless you're using sticky notes. Those are meant to scatter around. Use them to remind yourself of important tasks. For example, stick one on the front door so before you leave your home you'll be reminded, "Don't forget your lunch!"
  • And of course, we can't forget the most well-known note-taking tactic: To-Do lists. Making To-Do lists will keep you from forgetting important daily tasks.

Navigate Medical Appointments With a Notebook

Writing things down is especially important related to medical appointments. This process starts before you even get to the appointment.

  • Between appointments, as questions for your doctor arise, write them down right away.
  • Just before the appointment, neatly re-write your list of questions, putting the most important ones at the top in case you don't get to them all due to time constraints.
  • At the appointment, take notes on what your doctor is explaining to you.
  • Ask for help spelling names of medication or medical conditions.
  • Quickly review your notes with your doctor to be sure that you have understood correctly.
  • If possible, bring someone you trust with you to the appointment so they can take notes while your full attention is with your doctor. 

Use Your Cell Phone to Keep Track of Information

Your cell phone comes with tools to help you keep track of information and keep organized. And using technology is helpful when it's hard to write due to joint pain. Also, using technology requires less paper, so helps prevent clutter.

  • If you don't want to keep a notebook on you at all times, use a cell phone note taking app. Most phones come with them already installed. Try the voice command option so you don't have to use your hands. 
  • You can also send yourself a text, email, or voicemail to help you remember important information.
  • Taking pictures helps too. For example, take pictures of support group flyers or take a screenshot of an address listed on a website.
  • Use a calendar app with an alarm to help you remember to take your medication, or to remind you of appointments. For appointments, include details like the address and phone number of your destination so you don't have to find it while you are rushing to leave.
  • Calendars are helpful for more than remembering appointments. Use a calendar app to schedule tasks and organize your days.

Remember, Lupus Fog Is Not Your Fault

Lupus fog is challenging to live with and can trigger a wide array of unpleasant emotions. If you feel yourself getting frustrated or start putting yourself down for not being able to remember as well or think as clearly as you used to, pause. Take some deep breaths. This will help both your mind and body relax.

Self-compassion is important, too. Lupus fog is not your fault. It has nothing to do with your intelligence or personality.  It is caused by lupus. You are doing the best you can with a difficult situation.

However, lupus fog can lead to experiences that are so ridiculous that you can't help but find them funny. Being able to laugh at these situations is a helpful way to cope and put a buffer between you and those other unpleasant emotions and experiences.

Share your lupus fog experiences at a support group or with other people with lupus. They will truly understand and probably laugh along with you.