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How Do You Explain Brain Fog To People Who Just Dont Seem To Get It?

How Do You Explain Brain Fog To People Who Just Dont Seem To Get It?

i keep having those moments where my bf is like: what are you mixing it? me: mixing what? a drink? him: what we just talked about 30 minutes ago!
he gets angry I tell him to just repeat what he said instead he gets angry at me that I dont remember? stupidest behaviour i explained him already but as he cant imagine it i think he cannot understand it... how do you deal with those things?

A MyLupusTeam Member said:

I experience brain fog frequently and it has helped my family have more patience with me when I explained why and asked them to read about it on the following website. I copied the section about Lupus brain fogLupus Fog and Memory Problems

By R. Morgan Griffin

Lupus fog -- the forgetfulness and fuzzy-headed feeling that can come
with lupus (systemic lupus erythematosus, or SLE) – can be one of the
most frustrating symptoms of the condition.

The term lupus fog means more than memory problems. It also refers to
cognitive difficulties, such as trouble helping your child with
homework, or writing a grocery list.

"It can really make your whole world fall apart," says Janet Foley
Orosz, PhD, a public policy expert in Ohio who has struggled with
lupus fog for almost 20 years. She's now collaborating on a web site
and vocational program designed to help others with the condition.

There's no cure for lupus, so there's no cure for lupus fog either.
But there are ways to work around your problems with concentration and
memory. Here's what you need to know.

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, a
rheumatologist at the Lupus Center of Excellence at 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

While researchers study possible causes of lupus fog, Orosz focuses on
coping strategies that help people deal with it.

"When you're a person dealing with lupus fog, you don't worry that
much about what's causing it," says Orosz. "What you care about is
learning how to work around it."

posted about 3 years ago
A MyLupusTeam Member said:

After I posted the explanation about brain fog I realized I forgot to post some ways to deal with Lupus fog. Here they are:


Tips to Improve Lupus Fog Symptoms:

Put it in writing. "It's really important to lighten the load on your working memory," says Orosz. 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."

Hope this helps a little. It does help me.

posted about 3 years ago
A MyLupusTeam Member said:

I'm not sure anyone who hasn't had brain fog can really understand it. My family just thinks I'm exaggerating. As a nurse,I personally think a neuropsychologist is over kill. They will do a lot of expensive testing that will most l likely all be negative and they don't treat autoimmune diseases, so they really don't understand them. If you're having severe headaches, changes in vision or extreme memory loss I would discuss it with your rheumatologist first. They are the specialist for autoimmune diseases. I worked for doctors for 20 yrs. A neuropsychologist will not see you without a referral. They mostly specialize in traumatic brain injuries and they aren't cheap. insurance companies won't pay unless you have some very significant symptoms that warrant that level of treatment. Brain fog from lupus or memory loss due to age doesn't qualify. I'm a nurse not a doctor and it isn't my place to diagnose you, but talk to your rheummy first. Like I said, you'll need their referral first anyway.

posted over 3 years ago
A MyLupusTeam Member said:

I don’t apologize for my brain fog (it started with Lyme Disease) or try to explain it to those with no compassion or grace, it’s a waste of energy and something they are unlikely to understand. The way I look at it most people have things they continually do not do well. Theirs are habits or mindsets People will say, “it’s so hard to change!” and want understanding yet which of them can make their brain think clearly in the midst of a bad cold, flu or migraine? 😆, NONE! Foggy brain and the low energy and cognitive issues are part of the brain’s inflammatory response to illness. People with autoimmune illness, Lyme, fibromyalgia, diabetes, MS, Lupus, Parkinson’s... the brain is caught in that inflammatory response. There is no way to WILL yourself out of it. Stop apologizing and explaining for being foggy. I do apologize if my actions caused a consequence for someone but then I move on. It’s usually much harder to live in this fog than whatever inconvenience I caused another. Good boundaries and giving yourself the grace and love others fail to give will help keep you from feeling down when someone gets impatient because you don’t remember.
I once had a roommate that helped with bills. She was completely trustworthy. She did not understand my brain fog and “amnesia” but helped by figuring out my share. All I had to do was write the check. I miss that woman AND her help. I’m muddling through on my own and that’s okay.

edited, originally posted almost 2 years ago
A MyLupusTeam Member said:

The way I explain it is to ask someone to try writing with their non-dominant hand. Even though your brain knows how the pen should move, your hand just isn't "getting it." When I'm in a brain fog, my whole thought process feels like writing left handed. Some people just won't ever understand, but this explanation has helped a few to approximate the feeling.

My bigger problem is explaining it to myself. Last bad foggy day I had, I got the (ahem) brilliant idea that my brain was like a muscle and I needed to exercise it before this fog becomes permanent.

My big downfall is that even with physical exercise I'm impatient for results and tend to overdo it and push too hard until I injure myself. Same here. I grabbed a book of logic puzzles and dug in. Next thing I know, I'm having a four day long panic attack - my first ever. What an awful feeling. A week later, I'm still a bit shaky in the brain, just like walking for the first time after a horrible leg cramp.

And yes, LED lights definitely make my head hurt. Yoi!

posted about 3 years ago
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