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The Pain Brain Drain

The Pain Brain Drain

I was recently talking to a friend, who mentioned her daughter’s golf lessons. “She’s taking golf?” I asked. She replied, “Yes, I told you that when her lessons started.”

A few days ago I was laid up with hip pain, looking for some distraction on my iPad until the muscle relaxer and painkiller kicked in. Remembering a tv show recommended by a friend, I began streaming it. It was exactly the distraction I needed, so I texted my friend to thank her. She replied, “I didn’t recommend that show to you, but I’m glad it’s helping.”

What is happening to my brain?

The unsettling feeling of not being able to trust my memory or cognition began flooding my body, and then I realized that it’s a familiar feeling. Suddenly, I knew exactly what was happening to my brain: I had been in too much physical pain during those conversations to remember them accurately.

Often when it comes to rheumatoid arthritis/rheumatoid disease [RA/RD] brain fog, it stems from my fatigue. While I haven’t been energetic for these past couple months of increased disease activity, I haven’t felt that heavy, debilitating fatigue that sometimes accompanies my flares. When I’m wearing that heavy coat of fatigue, everything feels slow from my feet all the way up to the thoughts in my head. I have a hard time finding the word I’m looking for, and feel like my brain isn’t “clicking.”

I’ve come to realize that I also have cognitive lapses when it comes to pain. This phenomena isn’t as pronounced as the brain fog that comes with fatigue, but I’m realizing that my brain muddles information it takes in when I’m in a lot of pain. My brain splices two conversations with different people into a memory of one conversation, or it jumbles the chronology of the details, or leaves some out altogether.

Our brains are always deciding what information should go into long-term storage and what should be deleted. We take in so much information every day that we couldn’t function effectively if our brains didn’t prioritize it. However, when I’m in pain it seems like the file clerk in my brain came to work high and is putting information in the wrong folders and destroying what should be preserved.

Understanding that pain impacts my cognition

While feeling that I can’t trust my brain after a flare is not a comfortable feeling, understanding that pain impacts my cognition is less unsettling than the exasperated “What is wrong with my brain?” query. It’s frustrating that RA/RD impacts me literally from my head to my swollen toes, but at least there’s not an additional neurological diagnosis waiting in the wings. I would rather have a mind like a steel trap, but understanding that my memory is less reliable after a flare can help me develop strategies. When I’m in pain, I can make an effort to take more notes during work meetings than I typically would or take a moment to back at emails I sent while hurting before following up with people to make sure I haven’t mixed up anything in my memory.

It’s amazing how profound the impacts of RA/RD are, as this disease can impact joints, tissue, muscles, organs, and even cognition, not to mention the impact of medication side effects. While I would give anything to get rid of this disease, understanding just how pervasive the symptoms are helps me better understand the challenges I’m contending with, and allows me to give myself a little grace when I misremember.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • CynthiaV
    7 months ago

    Not being able to recall the names of everyday items and ppl from the not too distant past is scary. There are times I fear I have early onset Alzheimer’s disease but my doctor advises me I do not. I still recall what items are used for even if their names elude me. But still forgetting words is painful as I once had an extensive vocabulary that seems to be shrinking by the day. I do puzzles and read to keep my mind flexible but what once came so easily is now hard work.

    Thank you for normalizing this phenomenon for us.

  • Tamara Haag moderator author
    7 months ago

    Hey CynthiaV,

    Yes, it is scary and painful when this happens. I don’t think I will never fully accept it, as it is jarring and frustrating and leaves me feeling stupid and/or vulnerable. However, reading all comments from people who share this experience is helpful to know that we are not alone in facing this challenge. Thanks so much for sharing – it helps us all!

    Gentle hugs,
    Tamara

  • Tamara Haag moderator author
    7 months ago

    Hi mcadwell,

    Thank you for sharing this moment, as I know it involves being vulnerable to do so. I must say that what you lack in recall, you make up for in creativity!

    Once I was shopping for a duvet cover and couldn’t find them. When I went to ask a couple of salespeople who were chatting, I couldn’t remember the word for “duvet”. So I asked, “Where are the comforter cases?” They both laughed, but not maliciously. I then laughed as well, partly from embarrassment and partly from this funny thing that is the English language.

    Your example also reminds me of the stories David Sedaris has written about learning French. When he didn’t have the necessary vocabulary he would describe items in the way that we did with “dirty dishes garage” and “comforter cases.” Those are some of my favorite stories of his, that make me laugh and laugh. I didn’t make the connection until just now that I might appreciate them so much because they resonate with me.

    It’s better to laugh than to cry, and RA/RD certainly gives us plenty we can cry about.

    Thanks again for sharing your story and letting us know we’re not alone with these challenges,
    Tamara

  • mcadwell
    7 months ago

    Perfectly said Tamara! I won’t fully accept it either. At times it makes me feel like a child that hasn’t even developed language skills. And, like Cynthia says, I can remember what the “thing” is for I just can’t remember the “thing’s” name.

    Not too long ago I couldn’t remember the name of a kitchen appliance. I kept calling it the “dirty dishes garage”. My son laughed and asked if I meant the dishwasher. Yes. That is what I meant. I knew that “thingy” washed the dishes but I could not, for the life of me, remember that it was called a “dishwasher”.

    sigh

  • Froggyprincess
    10 months ago

    Thank you. I love all the articles written. They help me substantially. This particular article really brought attention to my “brain fog” I have noticed when I’m really tired or doing too much I have a hard time forming my words or start stuttering. If I slow down it will come to me. And I have noticed alot lately I’m forgetting things said or leaving items at home. It’s very frustrating and exhausting in itself. I have NEVER been that person. I have always been the one everyone relied on remembering or knowing how to get somewhere. That is getting harder and harder for me to do.

    Thanks again for the article. I hope you keep them coming.

  • Tamara Haag moderator author
    10 months ago

    Hi Froggyprincess,

    I’m sorry to hear that you’re having a hard time, but I really appreciate you sharing this, as it helps others to know we’re not alone. Yes, this disease definitely changes one’s self-concept, but as you shift away from thinking of yourself as the elephant who never forgets, I hope you will also think of yourself as courageous and determined as you face each day with the challenges RA brings.

    Thank you for sharing, and please continue to do so any time you feel inclined.

    Wishing you all the best,
    Tamara

  • Richardgross
    10 months ago

    Hi,
    I was wondering if anyone is taking marijunable ?
    or CBD oil ? I Need something more than what I’m currently taking percocet 10/325 I have RA and OA for the past 20 years and now I’m 52yrs and feel like 82

  • Sneed
    10 months ago

    I use both. Straight MJ, now known as “flower,” and CBD oil. The MJ is for sleep and the oil for joints. Since starting oil several months ago my hands have improved substantially and I was able to recover VERY quickly from rotator cuff surgery. Using MJ for sleep is an old use and an effective one. Colorado dispensaries sell a variety of hashish derived concentrates that are a lot easier and faster to use than flower. One used them in a vape pen or the like, which can be fired up in seconds when one lies there awake in the middle of the night.

  • TLTrujillo
    10 months ago

    Richardgross I live in a state that has legalized medical cannabis. I had my card a few years ago. It worked wonders for my pain and sleep issues. I didn’t like the setiva strains because they made me anxious but the Indica strains relaxed me. My card has since expired due to doctor changes and life changes so I used CBD oil orally and topically now. They help but aren’t quite as effective as the full cannabis. Hope this helps.

  • betharooski
    10 months ago

    This article really hits home. Thank you for sharing and nudging the reader to understand and/or feel validated. Before I resigned from a professional-high detailed job I struggled with this. I worried that my coworkers would think I was loopy from a pain pill. I still struggle but my stress is less if I forget something at home. I sure hope a medication can solve this mysterious monster affecting the mind!

  • Tamara Haag moderator author
    10 months ago

    Hey betharooski,

    Thanks for sharing your comments and experience. That worry about what others will think is really common, and it’s helpful for us to know that we’re not the only ones struggling with that, so thank you! Yes, I keep hoping for medical advancements as well.

    Wishing you all the best,
    Tamara

  • kkharrod
    10 months ago

    Thank you so much for sharing this article. I never thought about the difference between brain fog and drain that mixes things up or associating fatigue with fog and pain with drain. I experience both, and of course it’s worse when I have debilitating fatigue and pain, which happens often. It helps me understand why people look at me funny and say that I said some word unassociated with the rest of the sentence– and when they tell me what I said I feel like they must of heard me wrong. Why would I ever say that? It happens when my simptums are bad, but I hadn’t made the connection. Thanks again for your superb writing!

  • Tamara Haag moderator author
    10 months ago

    Hi kkharrod,

    Thanks so much for your kind words, and for sharing what you go through. It’s amazing how long it can take me to make connections. I’ve been diagnosed for 18 years and I’m still making realizations about how this disease impacts me. It’s definitely not just about the joints! Thanks for sharing your experience, as it is validating for others to know that we’re not alone in these challenges.

    Gentle hugs,
    Tamara

  • MaryB
    10 months ago

    bscott,
    Thank you for this info. Boy, it REALLY helped me. I have had this happen so much and just figured it was the med,age,etc.
    Now I can understand what has been happening and this will help me so much. Now I won’t get so upset(which doesn’t help)but can reason out the memory loss. This is similiar to not being able to eat when the pain is “blasting”. Pain really controls so much.
    Thank you again, this will help. I’m hoping you have better days.

  • Tamara Haag moderator author
    10 months ago

    Hi MaryB,

    It always makes my day to hear that I have helped anyone else facing the challenges of living with this disease, so thank you so much for your kind words. I am nearing the end of my 40th year of life, and my biggest takeaway from all the reflection I’ve done at officially reaching middle age is that I must be kinder to myself. As you say, getting upset doesn’t help, but understanding why our misfunctions are happening can.

    Thank you for being in our community,
    Tamara

  • bscott
    10 months ago

    Thank You!!! for this article. I’m going to try and get my wife to read it. There are days she thinks I am lazy and/or not paying attention as I am always tired and have a hard time remembering even the simplest of things at times. I have tried to tell her but she just doesn’t get it. Maybe this will help. Thank You again.

  • Tamara Haag moderator author
    10 months ago

    Hi bscott,

    I’m so glad to hear that you found this helpful. I do hope that your wife will read it. Sometimes hearing about a stranger’s experience can help people be more objective with the people they spend every day with. It is so hard for people not living with a chronic illness to understand the profound ways it impacts us on multiple fronts.

    kkharrod, as you mentioned the barometer, I thought you might relate to this article about my experience with barometric changes: https://rheumatoidarthritis.net/living/sorry-cant-today-barometric-pressures-changing/

    Wishing you both all the best,
    Tamara

  • kkharrod
    10 months ago

    Maybe if she reads our stories, she’ll understand. It happened once with a friend of mine; I was struggling so hard to put thoughts together that I excused myself, went home, took pain killers and inflammation meds, took a nap and drank a good cup of coffee. Once my symptoms got better, I got back with her and explained what happened. It was like the light went off for her. She told me that her husband has RA and was telling her the same thing. But she didn’t really believe or understand. I also have extra trouble when the barometer plunges or spikes. I showed her my phone app barometer and explained. Something visual– including my appearance and demeanor that day– helped. Her husband got disability soon afterwards and she was very supportive through the process. Best wish! It helps when family are understanding.

  • TLTrujillo
    10 months ago

    This resonated a great deal with me. Sometimes in mid-sentence I’ll completely forget what I’m saying and just stand there with a blank look on my face wondering what just happened! Or I’ll forget the simplest of words. Or I get confused about who I had what conversation with. I constantly misplace keys, my phone, bills…. I try to be regimented about keeping items in set places for this very reason, but the brain doesn’t always cooperate. Thank goodness for the calendar in my phone or I’d miss a good part of my appointments, taking my meds, and social events (provided I didn’t misplace my phone, lol)! I try to joke it away but there are times its quite embarrassing. Thank goodness those closest to me have grown used to it and know where it comes from! Although, they aren’t beyond teasing me, good heartedly of course!

  • Tamara Haag moderator author
    10 months ago

    Hi TLTrujillo,

    Oh, that mid-sentence stop is common for me too! I know exactly what you mean. Thanks so much for sharing all of these experiences, as I am sure I am not the only one thinking, “That happens to me too!” It is hard to live with these things, but it helps to know that we’re not alone with these challenges, and most importantly that we are not less intelligent because of them.

    Thanks for sharing,
    Tamara

  • TLTrujillo
    10 months ago

    Thank you Tamara. I definitely needed the reassurance about not being less intelligent. The day after I commented I was packing lunch for my fiance. I was in a great deal of pain because I had over done it earlier in the day. I told him that he was just getting a basic tuna salad sandwich, no lettuce, tomato, etc. The next day around noon I get a call from him laughing and saying, “wow! When you said the sandwich would be plain, you meant plain!” I asked, “was it that bad!” He said, “well, the tuna tasted just fine. But it was so plain it had no bread!” I don’t assemble the sandwich when I pack the lunch so the bread doesn’t get soggy but I forgot to pack the bread! Lol! I laughed it off and told him he was lucky he didn’t just get bread with no tuna, but I felt so stupid! I try to approach these things with humor because it makes it less stressful. However, I did remind my fiance that when I’m in that much pain he has to check up on things I do… look over my shoulder. He said when I’m in that much pain I shouldn’t be doing anything but I’m too stubborn. Anyway, I just had to tell you all my funny story. Maybe it will make someone feel better!

  • Mary Sophia Hawks moderator
    10 months ago

    Hi Tamara! Great article! I struggle with this all the time, and especially when in pain. I used to remember all my passwords, but now I have to list them in my phone. (I know, I’m not supposed to do that, but I no longer have a choice!). I really like what you said about splitting memories between friends. It makes so much sense. Thanks for writing for us!
    Mary Sophia

  • Tamara Haag moderator author
    10 months ago

    Hi Mary Sophia,

    Thanks so much for your kind words! And I have all of my passwords in my phone as well! There are apps where you can add another layer of password protection to your notes (if we can remember that!). With all the different requirements – some sites requiring special characters and some not allowing them, etc. – I would be lost without my cheat sheet.

    Thanks for sharing what you go through. I think it helps us to be kinder to ourselves when we know that others are facing similar challenges and it’s not something we can make go away through sheer will.

    Gentle hugs,
    Tamara

  • Rose de Kook
    10 months ago

    It is debilitating but good to know why! I get frustrated trying to find the word I was going to say in a conversation. At least I know why now. Hard to laugh it off sometimes!
    Take care all.

  • Tamara Haag moderator author
    10 months ago

    Hi Rose de Kook,

    Yes, I know exactly what you mean about searching for a word, or even completely forgetting what I was trying to say in the first place. And I agree it is hard to laugh off, because it’s a hard reality. I’m trying to be kinder with myself when it happens, which requires some retraining because I tend to be hard on myself.

    Wishing you all the best,
    Tamara

  • MayteR
    10 months ago

    I didn’t understand how I have been so forgetful lately. I mean…I misplaced a $13,800 check! I forwarded this article to my husband so he can understand a little more how this is affecting my brain as well as my body. Thank you!

  • Tamara Haag moderator author
    10 months ago

    Hi MayteR,

    I’m so sorry that you’re struggling with this as well, but I’m glad that knowing that others are also experiencing this is helpful for you. It’s easy to be hard on ourselves, but we would get rid of this disease if we could!

    Wishing you all the best,
    Tamara

  • JENNI60
    10 months ago

    This is so true, this disease has so many debilitating effects on our bodies. I stay praying for our health with this disease.

  • Tamara Haag moderator author
    10 months ago

    Hi Jenni60,

    Thanks for sharing your comment, and I am praying for health for all of us as well!

    Gentle hugs,
    Tamara

  • RoastedBarbarita
    10 months ago

    Hi, this is so well said. I struggle with this all time. It’s really embarrassing. I don’t even know how to explain it to people who are close to me.
    Thank you for sharing this.

  • Tamara Haag moderator author
    10 months ago

    Hi RoastedBarbarita,

    Thanks so much for your comment. I’m sorry that I’m not alone in this, but I am glad that it’s helpful for others to know that we are not alone in facing these challenges. I too have felt embarrassed so many times. Feel free to share this article with any of your close friends/family if it helps to hear about it from someone else.

    All the best,
    Tamara

  • Lawrence 'rick' Phillips moderator
    10 months ago

    It is profound. We often forget that RD is a all encompassing condition. It even gets into our unconscious. Wouldn’t it be nice of the next great biologic medication worked on that as well as the joint inflammation.

  • Tamara Haag moderator author
    10 months ago

    Oh yes indeed – the things I wish the next great biologic could do! All the best, Tamara

  • kat-elton
    10 months ago

    Hi Tamara, Great article- I sometimes call my best friend my elephant because she has the memory I don’t about things that happened years ago! I realized years ago that the pain had to affect my long term memory somehow, and now, like you, I write things down as much as possible and set reminders on my phone, especially when my pain increases.

  • Tamara Haag moderator author
    10 months ago

    Hey Kat – Oh, I have an “elephant” friend too, but I never had a nickname for her. 🙂 It is amazing how far-reaching the impacts of RA/RD are. Thanks for sharing!

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