Brain Fog? Cognitive Impairment? Which Sounds More Serious?

As a chronic illness patient, I am over the term brain fog. Let’s be honest here, it is cognitive impairment. Two years ago when I wrote “Yes, Brain Fog IS a Thing“, I was more concerned with ways to deal with it on a day-to-day basis than investigating the neurological, physiological or immunological causes or possible relief.

Cognitive impairment is a symptom experienced by MANY people with chronic conditions, irrespective of age, yet the term is more commonly associated with older people. Google cognitive impairment and nearly every result will couple cognitive impairment with “the elderly” or “in aged care” and similar phrases.

All is not lost, however – there IS recognition! And hope!

Cognitive disturbances, mood disorders and fatigue are common in SLE patients with substantial adverse effects on function and quality of life. Attribution of these clinical findings to immune-mediated disturbances associated with SLE remains difficult and has compromised research efforts in these areas. Improved understanding of the role of the immune system in neurologic processes essential for cognition including synaptic plasticity, long term potentiation and adult neurogenesis suggests multiple potential mechanisms for altered central nervous system function associated with a chronic inflammatory illness such as SLE.

Source: Lupus brain fog: a biologic perspective on cognitive impairment, depression, and fatigue in systemic lupus erythematosus

“Cognitive disturbances”. Not quite enough in my view. The title does, however refer to cognitive impairment.

Although widely used, I find brain fog to be a somewhat dismissive term – it just does not sound as serious as cognitive impairment.

Because mine was relatively minor, only really noticeable to me, I asked other patients about their experiences. Here’s what they had to say. I am sorry I couldn’t use all the responses I received!

“To me it’s like trying to fight through treacle.” ~ A

“I cant cope with multiple processes. I need things written down.” ~ J

“One recent trip [overseas] hubby went on, the flight wasn’t direct and took more than twice the time to get there. I was hysterical, and had zero recollection of the change in flight timing.” ~ N (Note, this patient does have a Functional Neurological Disorder diagnosis)

“… impossible to do more than one thing at a time. I can’t cook and carry on a conversation. I can’t wash clothes and pay bills …” ~ T

“I just don’t trust myself with details anymore. When making med appts etc I check and double check and still get things wrong. My confidence is so low when doing paperwork etc” ~ J

“I sometimes think it is more debilitating than the pain as I have learnt to push through the pain but I can’t push through the fog.” ~ M

“When my brain fog is bad I cannot process people’s speech. I describe it as words floating past me like pretty butterflies – I hear them so know they are there, but they have no meaning.” ~ F

“I wish more people understood that it’s not just being forgetful.” ~ Hannah, who writes at Sunshine and Spoons and has ehlers danlos syndrome.

Language is important. The terms we use are important. Cognitive impairment is damn important.

In chatting to my gastroenterologist one day, I complained about cognitive impairment. I said to him, “If I were a doctor, I would have to give up practicing.” His eyes nearly popped out of his head. “Really?”, he asked. He and I have known each other quite some time now – he knows I am not the type to exaggerate. I knew from his reaction I had spoken in a language he understood.

The reality is I could do my accounting or IT roles in a wheelchair. True, my personal trainer hat would be more difficult in that case. I can’t do those jobs without my cognitive abilities. If I do make a mistake though, I am not risking anyone’s health outcomes. If I was a surgeon, in the middle of surgery and I forgot or could not decide where to cut next: that could be a problem. If I misread a blood test result, or prescribed the wrong dose of a medication (although pharmacists are a double check with prescribing) the impact on the patient could be negative.

Although my cognitive impairment has been very mild compared to other patients, I would still notice it. I knew it was there. In the early days of my illness, before we got things under control, it was worse. Even so, I was so ecstatic when this happened:

Remembering that number was so fantastic (to me) I emailed the clinical trial co-ordinator to tell her! I was in a meeting at the time and I was clearly excited. I was ecstatic! I have written before about brain fog – like fatigue, it is something many chronic illness patients battle with.

Source: A Clinical Trial – Patient Journey – Part III

Of course, fatigue and cognitive impairment go hand in hand in many situations. This is well known and why workers should not be driving home after very long hours. Yes, they could fall asleep at the wheel, but also their reaction times will be impaired.

The quotation above from the SLE study indicates how difficult research is into this area, as it is with fatigue. There can be SO MANY contributing factors: the underlying condition, medications, pain, fatigue, poor nutrition, lack of adequate hydration, lack of exercise, poor sleep, onset of menopause, age (MCI for example) – the list goes on. My objective is to highlight the seriousness of it. I would love to see the term brain fog done away with. When I mention it as a symptom, I want to see the reaction I got from my gastroenterologist – acknowledgement that this IS A SERIOUS ISSUE. Let’s have a serious name for it.

I have REALLY noticed the improvement, since the new medication kicked in. I feel my reaction times when driving are normal, I remember where I put my glasses, I’m writing (you can judge whether I’m writing well or poorly!), my concentration lasts well into the evening, I don’t need a shopping list.

This is great for me, but my thoughts are of the other chronic illness patients out there struggling to get their health providers to acknowledge the seriousness of this particular symptom on their quality of life – including employability. I’m also well aware that even if it IS acknowledged, we may be a long way from finding solutions – but if science don’t consider it a serious issue, science won’t look for solutions.

After I wrote the fatigue article (linked above), I had one patient say to me she has simply given up mentioning fatigue to her doctor. I understand why, but we can’t give up because then doctors don’t see it as being as important as it is. Unless, of course, they suffer one of these conditions themselves and have been through it.

In the five years I’ve had my conditions, I’ve been asked MANY times about my pain levels. About my mobility. I do not recall EVER being asked about fatigue or cognitive impairment. Now, to be fair, the generic “How are you feeling?” could be an all encompassing question, but I’ve never got the impression it was including either of these symptoms by default.

So – over to you, fellow patients!

  • Do you experience cognitive impairment/brain fog?
  • Do you prefer “cognitive impairment” (or some similar name) or “brain fog”?
  • Do you, as a chronic illness patient, feel cognitive impairment as a symptom of your underlying condition is seen as important by the medical profession?
  • What impact does cognitive impairment/brain fog have on your quality of life?
  • Do you feel in your case it results from pain, medications, fatigue or is it a separate symptom of your condition?
  • Do you think your family and friends understand your cognitive impairment/brain fog?
  • Has it impacted your career, work choices or employability?
  • If you are a family member of a chronic illness patient, do you feel you understand?
  • In your experience, is cognitive impairment/brain fog adequately recognised?
  • Anything else you would like to share?

PLEASE NOTE: Cognitive impairment can be caused by a great number of medical situations and can range from annoying to critically serious – this article is ONLY addressing where it is a symptom of an underlying condition, such as described in the SLE quotation provided above. If you are concerned about ANY change in your cognitive abilities, please consult your doctor.

recurring appointments

Yes, Brain Fog IS a Thing

Brain Fog is definitely a thing. Not a thing we want, like, enjoy or get used to. It sucks: BIGTIME.

There can be many causes. Brain Fog can be a symptom of menopause. It can be simply a sign of aging. It can be a side effect of medications. It can be due to lack of adequate nutrition. It also seems to go hand-in-hand with many medical conditions, including autoimmune conditions and chemotherapy.

Before we can deal with brain fog in our day-to-day lives, we have to actually come to grips with the fact it is a thing. That’s tough. I had a memory like an elephant – once upon a time. At first you think maybe you are going nuts: at one stage I asked my GP if I could be tested for early onset dementia, I found it so scary, so “un-me”. It gets less scary as you develop strategies for dealing with it.

Check With Your Doctor

If you feel you are being affected, the first thing to do is check with your doctor (or doctors as the case may be). If you are female and of the right age, it may be menopause related and you may be able to consider Hormone Replacement Therapy which may solve the problem. If it might be a side effect of your medications, there may be alternative medications that may reduce the problem. Don’t just suffer in silence without finding out if there could be a different cause or a possible solution.

My personal example is around sense of direction. I would be driving in the right direction to get from point A to point B but my emotions would be telling me I was driving the wrong way. It wasn’t just driving. I’d park in the supermarket car park and when I came out I’d have no idea how to get back to my car. Admittedly, that was in a complex of shocking design, but it was distressing. I was almost thinking maybe I was going to have to give up driving, it was so bad. My daughter drove me to a medical appointment and I was convinced she was going the wrong way. It was stressful.

For completely unrelated reasons (several side effects I won’t list) I discussed a change of medication with the appropriate specialist. Within five days of ceasing the drug my sense of direction was back. I was ecstatic! Now, I can’t prove my sense of direction issue was due to the medication in question, however the co-incidence suggests it may have been. No, correlation does not equal causation, but in this particular case I’m fairly convinced.

Write Everything Down

Makes sense, doesn’t it? Write EVERY appointment or thing you have to do down. No, it doesn’t have to be on a piece of paper in a diary. I have calendar apps on my smartphone that will display several calendars at once, in different colours. This highlights any clashes between different aspects of my life. I have my office calendar, my Limberation calendar and my personal calendar.

Flag emails for follow-up! You’ll forget you said you’d respond tomorrow!

However you choose to do it, do it religiously! Unfortunately, this alone does not solve the problem.

Look at Your Calendar

Make it a religious part of your daily routine to look at the calendar. Allow me to illustrate. Last week I had a major change to my routine. While usually I work three days a week in an office, Wednesday to Friday, Last week I changed to working Monday, Wednesday, Friday because on Tuesdays and Thursdays I am going to Pain Management School (my name for it, not theirs). This change is temporary, but it is a disruption foggy brains find …… challenging.

I had an appointment on Thursday morning. As I lay snuggled under the doona I ran my day through my head. No, I convinced myself, I have this morning free. I made plans to have a late-ish breakfast and then wash and curl my hair. I was sitting waiting for the heated rollers to cool when my allied health professional rang and asked was I all right. “I’m fine”, I replied, thinking isn’t this a truly lovely gesture on her part.

“Well, I wanted to make sure because you are always so prompt.”

O.M.G I was SO SO SO embarrassed. I’ve always been the punctuality police. Being LATE gives me the horrors. Missing an appointment altogether because I FORGOT? O.M.G.

So make checking the calendar a part of your daily routine NO MATTER WHAT your foggy brain may suggest to you. Also check for flagged emails at the same time!

Medications Too!

Medications to be taken every morning or every night may not be so bad: I find that becomes just part of my normal brush-the-teeth-comb-the-hair routine. Anything that is not daily? Make an appointment in that calendar. The Repeat function in your calendar is great for that (see picture above). The classic example (sorry guys, this is a female example) is Hormone Replacement Therapy patches. Change twice a week, Wednesday morning and Saturday evening. If my phone doesn’t beep at me, it will be Friday morning before I think to myself “Did I?”

Even this morning (another Thursday, must be something about Thursdays) I again had a late breakfast (but DID check my calendar) then took a phone call, then sat on the edge of the bed to check social media and then thought “Have I taken my medication?” I decided I was pretty sure I hadn’t, so I took it. But the change in routine nearly bit me again.

Yes, the pill organisers from the pharmacy can certainly help because you can look and see if Thursday’s pills are gone.

Don’t Feel Guilty

This is about taking care of yourself. If you stuff up, as I did last Thursday, accept this is now part of life. You will forget things. All feeling guilty will do is add stress to your day and we’ve already talked about stress. Most of your medical team will understand if you miss an appointment – they’ve seen it many times before. WE each think we are the only one, but we aren’t. Friends and family should care enough about you to understand. Work, I agree, is slightly different. If employed, we are getting paid to do a job and we should do our utmost to not forget, but if it happens, it happens. Apologise, reschedule, move on.

Shopping Lists

I’d happily been through my whole life rarely if ever writing a shopping list. Now? I write shopping lists. I can’t stand getting home from the grocery shopping to find the one thing I REALLY REALLY needed is not in that pile of shopping bags.

Variations on the Theme

Brain fog is a thing. It can also be different for different people. One thing I haven’t yet found a solution for is retention of new information. For example, I’ll read something on a web site, let’s say a price of an item. As soon as I’ve gone from that page, I can’t remember the price. While studying I found rote learning of anatomy hard to retain – I still struggle with the names of some of the muscle origin and insertion points, although I know where they are! Concentration may suffer, your mind will wander during conversations. The brain may “freeze” – finding a perfectly common word just escapes you (very difficult in business meetings, also very menopause-typical that one).

Some days, the brain just doesn’t want to be taxed.

Sleep, Exercise and Nutrition

Poor sleep, inadequate exercise and less than optimal nutrition can all contribute to brain fog, over and above any medical issues. Do the best you can to ensure you keep these aspects of your life in tip-top shape.

I’m relatively lucky. I’m not suffering from brain fog much at all and I have strategies to mitigate the difficulties. The first step was accepting there was a change and I had to manage it. The second step was learning to work with it, rather than fighting it. Fighting it is stressful and then we get back on the wheel of exacerbating our condition by fighting the condition. Completely self-defeating.

What are your experiences of brain fog? What are your managing tips? Please share!