Thursday, 5 March 2015

Foggy Brains: Lupus and Brain Fog

Brain fog is a common complaint in lupus and other chronic illnesses including fibromyalgia, chronic fatigue syndrome, stroke and many others. For me, it is one of the most frustrating aspects of dealing with a chronic illness. It can be caused by the illness itself and/or, or by the side effects of certain medications. “The term “brain fog” describes those times when you can’t think clearly or don’t even know where you are or what you are doing.1” When the brain fog strikes, my brain turns into mush: I lose the connection between my brain and mouth, words get jumbled and I forget what I'm saying halfway through a sentence. I walk into a room and forget why I'm there. My thoughts seem to empty out of my brain and a thick, woolly fog fills up the empty space. I do strange things - which seem perfectly logical at the time - such as putting the kettle in the fridge or putting on items of clothing the wrong way round. Many people describe it as being 'zombified,' and I totally get that, because that's exactly how I feel when the fog hits.

The Lupus Foundation of America interviewed a neurologist, who said “Lupus very commonly affects people’s memory. In fact, studies have shown that as many as 80% of people with lupus have some problem with their memory at some point in the disease process — fortunately for many people this problem is mild. There is no medication that we know of that definitely helps with this. Actually, more research has shown a benefit with interventions that include education and tips about coping strategies as well as the importance of treating fatigue, depression and pain in helping improve memory function."2



What Is Lupus Fog?

"Lupus fog is a general name for the cognitive impairments that often appear with lupus, including concentration and memory problems, confusion, and difficulty expressing yourself. These cognitive problems are often worse during flares. The good news: Lupus fog doesn’t usually get progressively worse, like dementia or Alzheimer's disease", says Lisa Fitzgerald, MD, from the Beth Israel Deaconess Medical Center in Boston. Instead, memory issues will probably wax and wane, just like other lupus symptoms. The exact cause of lupus fog is hard to pin down, experts say. In some cases, lupus can damage cells in the brain, leading directly to cognitive problems. However, in most cases other factors play a role, including fatigue, stress, and depression. Lupus fog is sometimes worse in people who also have fibromyalgia. Although it's possible that side effects from drugs such as NSAIDs or steroids could worsen lupus fog, experts say that switching medicines rarely resolves the problem.3"


Some symptoms of brain fog include:

  • Memory problems
  • Confusion
  • Disorientation
  • Cognitive dysfunction
  • Inability to 'think clearly'
  • Difficulty concentrating
  • Decreased attention span
  • Feeling mentally drained
  • Feeling like a fog is hanging over your brain
  • Problems articulating and/or finding words
  • Forgetting what you're saying half-way through a sentence
  • Getting tongue-tied easily
  • Absent-mindedness
  • Feeling sleepy

Kim Nault, writing for The Lupus Magazine, explains: 

“An estimated 70-90 % of SLE patients will experience the infamous lupus brain fog. This is the most common form of central nervous system involvement in SLE and can be mild to severe, and vary from person to person...Many assume that the brain fog of lupus is just some quirky annoying problem, that it is not that bad, not that serious of a problem. For more than half the patients with brain fog it will be a quirky, sometimes an annoying and even at other times a comical issue, but for others it will be very disabling. In addition, lupus brain fog notably fluctuates with and without disease activity...Some medical practitioners do not regard the lupus brain fog as a disabling issue that reduces their patient’s quality of life. This is unacceptable. Patients struggle with the cognitive impairments and the ripple effects that it has on their lives. To some patients it is embarrassing, frustrating and certainly regarded as incapacitating."4


Kim offers the following "Lupie Cognitive Survival Tips":

• Do not multi-task (it can prove dangerous)

• Do not overbook your daily schedule

• Do not over commit yourself

• Prioritize appointments/events/activities (don’t double book things on the same day)

• Determine your peak energy time of the day (schedule needs around that time)

• Reduce background noises when needing to focus

• Use only one calendar (mark doctor’s appointments in one color)

• Set timers for reminders (cellular phones and your PC have different applications)

• Note pads (one for pocketbook, one for computer desk and one for kitchen countertop)

• Keep things simple

• Learn to say “no” (we do not have to commit to every event or activity)

Kim adds "Do not be hard on yourself! Explain to your loved ones about your frustrations and concerns with how lupus is affecting your cognitive abilities. Some of our loved ones may even have simple suggestions to simplify things in our lives, which may foster better memory and peace of mind. Please do not try to tough things out on your own; this will not produce great results. Be willing to ask others for assistance with things. If you are a type-A control freak of a Lupie, try the Zen Lupie practice of not being a control freak! Living with a chronic illness while life whirls about us, can be at times very stressful. How often do I forget that quality of life begins right smack between my very own ears? As in life, some days will be easier than others will and when we lose our way, another veteran patient stands ready to hand feed us morsels that will lead us out of darkness and place us back on the path of inner strength and hope...
Do understand that lupus brain fog will wax and wane, some days will be better than others will. Do not be hard on yourself!"5

The writer Kim Nault, has her own blog called Redefining Myself With Lupus and MS:

In my own experience, Brain Fog feels like I am trying to wade through very thick mud and not getting anywhere fast. Sometimes, it feels like my brain is very woolly, with my thoughts getting caught and trapped on the fibres. I know my thoughts are there, but I just cannot seem to push them through into solid existence. It can get very frustrating. My brain cells feel as like they have been liquidised with my daily smoothie. Often, it feels like my brain has gone to sleep. It strikes me without warning and can last from minutes to days, sometimes weeks. Most of the time, I laugh about it, but sometimes it’s not funny, especially when it hits me during medical appointments.

Tips on dealing with brain fog from WedMD:

  • Put it in writing. "It's really important to lighten the load on your working memory," says Janet Foley Orosz, PhD. Instead of trying to keep stuff in your head -- and failing -- write it down. Write everything down -- every household chore, every birthday, and every doctor's appointment. Take notes during conversations. You need to get in the habit of writing down even the stuff you’re positive you would never forget.
  • Stay organized. Keep everything in a daily planner so you don't end up with your notes on random scraps of paper. Consult it many times a day. Come up with a schedule and manageable to-do list -- or even just one specific goal -- for every day. If you have a smart phone, get a good note-taking app that you can access on your phone and on your computer.
  • Prioritize. "I divide tasks into two categories -- things I must do and things that would be nice to do," Orosz says. "Then I only do the must-dos." She says an alternative way to organize is to rank to-do items by how much stress they're causing and to get rid of the stressful stuff first.
  • Say it out loud. "Things seem to stick better in the short-term memory if you say them aloud," says Robert Katz, MD, a rheumatologist and associate professor of medicine at Rush Medical College in Chicago. When you meet new people, use their name a few times in the conversation. After a chat or meeting at work, repeat the main points -- it will help solidify your memory and let others fill in anything you missed.
  • Time yourself. Orosz says that people with lupus fog should figure out when they're most efficient and schedule important tasks for then. Maybe it's a particular time of day or after a medication dose. Keeping track of time can help in other ways. "Allot a specific amount of time for a task and keep yourself to it with a timer," she says.
  • Stretch your memory. Playing word games and doing crossword puzzles can help sharpen your memory. "Many of the techniques that help older people who are getting forgetful will also benefit people with lupus fog," Fitzgerald says. Keep your mind active and engaged.
  • Keep good habits. If you have lupus, you need to take care of yourself. Reducing stress, taking naps, and getting enough sleep at night could help relieve lupus fog symptoms. "Regular exercise is important," says Fitzgerald. "It does seem to make the brain sharper."

Here is a video made by Christine Miserandino, on the subject of brain fog:


It is not just lupus sufferers who experience brain fog. It can occur in other conditions including fibromyalgia, ME, MS, medication side effects, nutritional deficiency, diabetes, celiac disease, lyme disease, chronic viral infections and other autoimmune conditions.

I'll leave Web MD to conclude today's adventure into the world of lupus:

"Having lupus fog can be terribly discouraging. It can undermine your confidence and even your sense of self, Orosz says. It’s important to remember that it's not you. Lupus fog is just another lupus symptom -- like achy joints or facial rash. Don't despair and don't settle for the symptoms. Talk to your doctor and see if you can get a referral to someone who specializes in treating lupus fog. The right treatments will help you feel better and more confident again."6



4. Extracts from the main article:
5. As above

6. See #3 above