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Explaining trouble i have with finding words.

I was diagnosed at 4yrs old with JRA. Now at 57 ,I am greatful for biologic.
My issue is that some people don't understand how my speech is affected with being exhausted and in pain. How can I explain this? My vocabulary can be sloppy on bad days. I dislike feeling dumb and sad. 🥺😪

  1. Thank you for bringing up this subject! I've had RA for 35 plus years along with fibromyalgia, peripheral neurophathies, high BP, ect... I often forget words, mispronounce them, say the wrong word - I'm sure you understand. The problem is, as you know, I "look fairly normal" so people are have this puzzled or shocked look on their face when it happens (if they don't know me well).


    I am a retired RN and my husband's caregiver, therefore I can't be shy and retiring when I am tired,, in pain, or stressed and pretty sure that this might happen. So I decided to just bring my "problem" out in the open even before beginning the conversation with his many doctors, RN's, health care providers, ect. About 2 years ago he was in the hospital for about seven months (admitted through the ER 25 times - it was awful) he had his second kidney transplant. This happened right after Covid-19 began, when no one was vaccinated, they didn't know much about Covid yet, and they kept sending him home before he was really ready to be discharged. I was completely exhausted, in a lot of pain, stressed beyond limits as I litrerally fought for his life.
    This is what I said: I have had severe RA for years. (I may or may not hold up my deformed hands). When I am tired, in pain, and or stresssed, my speech can be severely affected. Please understand.
    To other people: I have had severe RA for many years. When I'm tired, in pain, (I may or may not say this) and or stressed, it affects my speech and the words I say. Please understand. (I may or may not hold up my hands). Usually other people will tell me about a relative or friend whom has arthritis - usually OA - and I end up not talking much, lol.
    If it happens, for example, the grocery store checkout lane, then I will just say, I have severe RA that when. I'm tired, like now, my speech (or words) is affected. I smile even though I have a mask on. I hope this gives you an idea of what you might want to say or do. I refuse to be embarrassed anymore by this!
    I have found that my spelling is affected, too! Thank goodness for dictionaries!

    I'm sorry this is so long. I hope you can find better relief for your pain and I wish a cure would be found. No one seems to really understand the challenges of RA except someone else with RA. I guess that statement isn't very profound, lol!

    1. Hi . You definitely are not alone in the community in struggling with brain fog. My wife, Kelly Mack (a contributor here), was diagnosed at two, has had JRA or over 40 years, and understands exactly what you are talking about. Our contributors have written quite a bit on the topic. This link is to a search of our archive on the topic, which you can peruse at your convenience: https://rheumatoidarthritis.net/search?s=brain%20fog. I can also tell you that recent research has provided new insight into brain fog. For example, it has been found that some inflammatory cytokines can breakthrough the brain-blood barrier and potentially bring about brain fog and fatigue. There has also been a lot of research into the brain fog that accompanies COVID, particularly long COVID, and it appears to share attributes with the RA symptom. The hope is that these findings will lead to real treatments for this specific issue. Please know that this community gets it and is here for you. Best, Richard (RheumatoidArthritis.net Team)

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