Is it forgetfulness or…

Is it forgetfulness or…

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Image courtesy of Salvatore Vuono/ FreeDigitalPhotos.net

Image courtesy of Salvatore Vuono/ FreeDigitalPhotos.net

By Dr Irwin Lim, Rheumatologist

I see many patients who are intelligent and who juggle many aspects of life successfully. Family organisation, high level jobs, their hectic schedules.

And yet, when it comes to their health, they’re not so efficient. Let me give you some examples:

  • Turning up to 1st appointments without the referral letter or a pile of investigations they forgot to bring;
  • Returning to appointments forgetting to bring the investigation to be discussed eg Xray;
  • Forgetting to perform their regular “monitoring” blood tests;
  • Forgetting to take their medications;
  • At some stage, forgetting the usual dose of medication & then taking less or more of the medication;
  • Forgetting important caveats which have been emphasised repeatedly, such as, skipping a dose of biologic DMARD medication if they are unwell, for eg, during an upper respiratory tract infection.

Is this always just due to being forgetful?

Is it due to some ingrained desire to try and avoid thinking about a chronic illness?

I don’t know but it happens often enough for me to wonder. Do you have any ideas?

Dr Irwin Lim is a rheumatologist and a director of BJC Health. You should follow him on twitter here.
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  • Jeanette

    Irwin, as patients we wonder why too. It is a topic of discussion often when sufferers of RA …and indeed other AI diseases come together in various forums. We all note that we become forgetful and although you believe it is only when it comes to our health, that is most likely because that is the aspect of our lives you are involved with. Yes we appear to be functioning well in other aspects of our life but its all smoke and mirrors! None of us really know why it happens but it is extremely frustrating and we talk with each other about this often …is the medications? The so called Methotrexate fog? The pain medications?…well they definitely contribute I have no doubt as I notice myself that I am much more forgetful on higher doses of pain medications and that this improves if I lower the dose. Prednisolone?…well definitely the high doses of steroid impact memory and concentration too…but many of the people I have spoken to believe the illness itself impacts our mind…there is a brain fog, which impacts memory and concentration. I held down a high powered executive role prior to my enforced retirement due to my health and toward the end of my working days I needed to take more and more notes! And I had sticky notes everywhere! I would be speaking in a public forum or important meeting and forget what I was talking about half way through the discussion…I got really good at covering that up but it bothered…even scared me to be honest. This was never the case before my disease became very active and YES I was taking higher doses of medication towards the end of my working days in an effort to remain in the workforce so that did contribute but I have no doubt it was not the only contributing factor. I would love to hear your thoughts.

    • http://bjcconnectedcare.com Irwin Lim

      Jeanette, thanks for teaching me again.

      I’m aware of the possible medication effect & I have stopped medications for this. I have assumed that you’re right that the disease itself or at least coping with the disease may lead to “brain fog”.

      But I’ve also noted it in patients doing seemingly very “well” who are just returning for routine follow-ups with no obvious active disease., who sometimes are on little or no medication.

      I wrote the post as I was interested in hearing the patients’ perspective so thanks for sharing.

  • Secret Raindrops

    My memory & thinking used to be really sharp & I was proud of it. I was dx with RA March 2011, but thinking back, my brain was in (what seems like a) constant fog/haze since 2008 & fatigue began then as well. I remember this because I wrote about it number of times back then & I couldn’t figure out the reason why I was feeling that way. I can only speak for myself, and I believe RA begins way before joint pain starts. There were other indicators as well, but I’m leaving it out from this response as this is only regarding memory problems.

    This being said, when I started Prednisone a year ago, my ability to remember got even worse. In many ways it’s frustrating, but in some ways I like it, not having to remember all the bad! :)

    1 more thing though – A person with Rheumatoid Arthritis takes much longer to get ready to head out, especially if disease is not well managed. We find ourselves rushing & scrambling for the most basic things, and in the back of our minds we’re stressing about our doctor’s appointment. So managing to function is depleting our resources as it is. It’s those spoons! If our memory is failing us, it takes massive amounts of resources to keep track of everything & remember to stay on top of all things regarding our care. It’s a complex disease & as you know, managing it is not simple, and living with it: many call it a full-time job!

    • http://bjcconnectedcare.com/ Dr Irwin Lim

      Welcome to the blog & thank you for sharing how difficult the disease makes life.

      I would agree that RA begins before the joint pain. I think there is now increasing interest in this “pre-(clinical)RA” phase.

      The time management issue and the “spoon theory” is something I was never really that aware of until I invested time in social media.

  • http://ywasg.com Naomi Creek

    Hi and wave to everyone :)

    I also believe that the drugs play a role in forgetfulness and think fatigue can also be to blame. And as Jeanette says it’s not just forgetting to do things like take medication, but just going blank mid sentence and forgetting what you were talking about can be really embarrassing. I think MTX might have a role in this too as I have been on 1mg pred for a while now and still feel like my language/speech part of my brain is affected. It frustrates the hell out of my husband who is exceptionally gifted with language and is very articulate – poor guy! I frustrate myself!

    I also find that my mind wanders a lot and even in the middle of an engrossing movie, for eg. I can be thinking of dozens of different things and forget the last 5 minutes of what I had just seen! Not sure if that has anything to do with the RA or if it’s my personality. So on a plus side, I feel as though I am doing more creative thinking than ever before. Now to just harness that and use it!

  • Lisa

    I think in the case of patients that are doing well, forgetting might not be a bad thing. When my disease activity was really high I kept track of everything- my symptoms, my use of prn meds like pain meds or nausea meds, even otc tylenol. As my RA became more controlled I began to relax a little. These days I keep a list of my meds and update it only when I have an appointment; a couple of times I even forgot to update it and my Rheum Doc would say, for example, “didn’t we increase the mtx from .8ml to 1.0ml?”, then I’d remember that I’d forgotten to change that. I don’t keep track of my symptoms unless I start having problems, and I don’t keep track of prn meds except by looking at the date on the bottle and giving it a shake. I was on Enbrel for a year and a half and during a long period of remission I actually forgot to do my shot until the day after it was due. My RA was off my mind long enough to forget my shot for over 24 hours. How great is that! For me a bit of absent mindedness in the disease department is a positive thing- it means my RA is not front and center in my mind 24/7 as it once used to be…. I guess I’m getting on with life little by little. If I use ‘forgetting’ as a measurement of successful treatment then I’ll be celebrating the day I completely forget my appointment- after I call my doctor and beg for forgiveness that is :)

    • http://bjcconnectedcare.com/ Dr Irwin Lim

      Lisa, I really like hearing your experience which is quite different from the other comments I’ve had on this blog & on twitter. I suppose there’s lots of different reasons. I have noted that patients who are doing really well do also forget about the regular blood tests & as you said, forget about appointments. I suppose you just get on with life & aren’t so focussed on the disease any longer.

  • Jodessa

    Hi there! I would say forgetfulness is a huge part of RA – I have always had a sharp photographic memory and have my BA in Communication. During a flare up, however, I will forget entire chunks of time (not days or hours, lol – but conversations, what I did last week, etc) or have difficulty spelling or finding the right word to explain something very simple. The scary part of it is I truly believe that I know what I’m talking about in regards to something I am way off on – like I’ve created a false memory to replace the forgotten one (that sounds crazy but I swear I am quiet sane). For instance, I was sure that my first appointment with my rhumatologist was at 4:30 in the afternoon, I even looked at the calender to confirm it. But then the nurse called to confirm the appointment time at 11:15am, and when I went back to the calender it sure did say 11:15 there as well. Or I’m at the store buying brown eggs, open and look at the brown eggs to make sure there is no cracks – and when I get home I have white eggs. To me, it is by far the most heartbreaking aspect of the disease – and I associate it with the disease because it is during flare ups that these moments are most prominent. I also have very little concept of time-not just what day of the week it is, or month, or year, but how much time has passed throughout the day – has it been 15 minutes or 2 hours?tough to say! But a watch remedies that easy enough.
    It’s almost like there’s a “glitch in the matrix” if that makes sense. Definetly not a subconcious effort to avoid the disease. I wonder if it’s just that the body is applying so much energy to keep the body well/create/heal inflammation, and the parts of the brain that control those aspects are so active that the less essential areas of the brain are less active, fire less, etc. It’s all new and scary to me – but I will take joint pain any day to have confidence in my perception again. Hope this helps.

    • http://bjcconnectedcare.com Irwin Lim

      Jodessa, thanks for the insight.

      Did the forgetfulness/brain fog predate use of medication?

      By the way, I love the Matrix too! But wouldn’t want that happening to my brain.

      • Jodessa

        I have yet to take any medications except for advil…

  • Neil Saltmarsh

    Hi,

    I don’t understand why my memory is so bad. I used to be very mentally strong but a few things happened that shook that belief. For example, a few years ago, some friends at work said that a work mate we knew had drowned. Now this may sound awful, but I could not remember this person and apparently this person sat right opposite me in the office. At first I used to get angry and defensive about things I knew but now just accept that my memory cannot be relied upon. When I forget things, there is no trace of people or conversations. It’s scary but I am active in that I love running and quite fast (approx 4:30min per km), I love reading and writing and wine and cooking and working, so not quite sure what this thing is or how to quantify it or even how to get a diagnosis or combat it. Any advice would be helpful.

    • irwinlim

      Hard for me to know Neil. In general terms, I would go through the list of medications a patient is on. From those I use, I would worry potentially about Methotrexate or Salazopyrin EN as I have noted mild memory disturbance or reduced cognitive abilities on these. There are of course other reasons but that needs a full assessment by your GP.

  • Neil Saltmarsh

    Thank you Irwin. I am on no medication besides the odd magnesium, fish oil and calcium supplement, which I take on an ad hoc basis. My health is good and I’m pretty robust and strong.