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Has any one heard of Disphasia being related to polymialgia

Posted , 18 users are following.

carol16456
carol16456

My daughter who is 38 has had fibromyalgia for a few year and found an artical on their web site about Disphasia . Terms I believe to be related that I have heard mentioned on our PMR web such as brain fog or as in my case , starting a conversation and forgetting the word that I need and then rabbiting on using other words to describe what I mean

I find this a bit scary . I some time teach art for a few hours a week . And I go to discuss an artist and I cannot think of a name or in my panic even a paint tipe . Does anyone else have this happen .

I was kept on the same level of prednisalone for 4 months because my ESR was static . Pred level was 9 mg this last ESR reading was 32 . I spoke with my GP and we agreed for me to start to lower the prednisalone slowely .

I havnt spoken to my doctor about Disphasia , or my simptons . Am I loosing the plot . Will it get better when I am off the steroid , hopefully in a year or so . Please someone out there give me some comfort I do not want to be the only one that has a brain ' sucking its thumb , and closing its eyes because it is sleepy .

Havnt found the need to come calling on this site for a while , which I guess is a good , and hope that anyone who remembers me are feeling a little better to .

Hope some one can tell me I am not alone with this problem 🙊

0 likes, 23 replies

23 Replies

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  • carol20979
    carol20979 carol16456

    Posted

    Yes I do this also, but I have been given benzos they also cause this. It is frustrating i try to visualize the word Iam trying to come up with it helps. Fortunately it doesn'hapen often
  • LayneTX
    LayneTX carol16456

    Posted

    Sorry to say, I was that way before PMR. I think our brains are just slowing down. Or if my blood sugar starts dropping I really can't figure out words. 

    But yes, on higher Pred I was kind of zombie like.  That's just my experience. wink 

     

  • maid_mariane
    maid_mariane carol16456

    Posted

    Hi carol

    Since I have been on prednisone Sept 2015 I describe my brain as a combination of alhzimers, brain injury and developmental. I frustrate my husband all the time. I forget how to spell, know the word but can't bring it up.

    I use to do nothing but edit and write report and I couldn't if I tried. I joke about it, if not I would cry.

    Mariane

  • julian.
    julian. carol16456

    Posted

    good news is I'm much better now pred is down to 3mg/day. Horrible at 10 - 12.

    I think ........!

    Not finding the word was minor, and I was a bit prone anyway.

    Disphasia seems much too heavy a description for my symptoms. But horrible nevertheless.

  • Mrs.Mac-Canada
    Mrs.Mac-Canada carol16456

    Posted

    I've been on pred. for 3 years I'm currently reducing to 5mg and it seems to be going OK. I have the same issue with not finding words as well as short term memory blips. I just explain to people that I am not really losing it and blame it on the pred. I was never like this pre pred. and don't think being 3 years older can account for it. My husband is good and says the words I'm looking for when he's around but I think he does wonder where my brain is sometimes. It is frustrating but we need to just laugh at ourselves and know it will get better.

    Hugs,

    Diana🌸

  • iellen32
    iellen32 carol16456

    Posted

    This name is familiar to me I 've heard or read it.

    It may be one of those age issues - it comes with the territory.

    Each one of us ages differently,

    To forget names, foggy brain...etc

    You keep observing the duration and how many times those lapses happen.

    At any moment you see it repeats at the point to interfere with your daily tasks, the teaching, for instance, you will look for professional help.

    I know it is those things we wait before jumping to the ressource we know exists.

    Hoping all will work in your favor, I send you, Carol. a gentle hug.

  • Sheilamac_Fife
    Sheilamac_Fife carol16456

    Posted

    You sound just like me Carol! It's very distressing and frustrating. I also find that all I can do to complete my thought is to describe the concept, person or thing... It's like a game! I don't accept that it's my age. This came with Prednisolone. I used to chef in our own restaurants and won lots of awards, now I frequently go blank on recipes that were second nature. Worse still, when preparing a dish, I think 'this seems different somehow' but carry on! I

    knit and sew and I have this problem with long ago understood patterns and techniques! A part of my brain, quietly lurking somewhere knows I'm doing it wrong but I keep going! Why don't I stop? If it seems wrong, it probably is!

    Fortunately, it's not all thetime and I still seem to be able to do the problem solving to fix it! I do so many annoying daft things I won't bore you with them all, but it is such a waste of time and energy. I used to teach too and have often thought, thank goodness I'm not standing up in public trying to find the

    words! It's bad enough getting the weird looks from family!

    I am currently reducing from 6mg to 5.5mg and had hoped there would be

    an improvement by now. However, I take heart from others who say that it

    does disappear eventually! 

    Believe me, you are not alone! X

  • carol16456
    carol16456

    Posted

    Thankyou all for your comforting replys it's comforting to know I am not alone .

    I hope to be finished with prednisalone in 12 months or so . I know to take it slowly and I hope we all reach that goal that seems such a long way off .

    ' go with the flow ' is my mantra these day . Thankyou all once again 🌷

  • EileenH
    EileenH carol16456

    Posted

    I think most of us have at some time had difficulty finding the right word or the sense of brain fog making concentration difficult. During the 5 years I had PMR without pred I know I used to read stuff I had just translated several times to be sure what I'd written made sense - and often at the end of a paragraph I hadn't a clue what I'd just read! In the time since I started pred it has improved and my memory is definitely back where it was now - pretty all-encompassing though I say it myself - though I do find myself checking how to spell words occasionally which I never used to need to do. I know it doesn't look quite right but lack the imagination to choose the right version. 

    I think "sucking your thumb and wanting to go to sleep" fits the feeling with PMR pretty well...

     

    • LayneTX
      LayneTX EileenH

      Posted

      So Eileen, it sounds like it's more of a PMR thing than Pred? Or perhaps inflammation throughout our body changing with PMR and Pred making inflammation fluctuate? 

      You mentioned imagination not being there, is that why I can't or don't have desire to paint anymore? You said it right, imagination... I don't seem to have any right now.

      I did read a nice thing yesterday regarding defining our self (yes, this journey is making me soul search since I'm seeming to be a different person now)... It said we do what's in our heart...well I was confused at first then realized...wow! What's in my heart now is healing! So, that's ok! In fact it's good!  I want to heal more than anything, which is why I struggle with my old hobbies or even socializing (because others don't want to talk illness, foods, ...). So...I'm accepting my journey at this time is to heal my mind and body. Ha... I guess I am using imagination...I'm visualizing healing energy flowing through my blood vessels, muscles, tendons, .... wink 

    • EileenH
      EileenH LayneTX

      Posted

      No, I think it can be either, both - whichever way you want to look at it. I imagine the causes are different - the results are similar-ish.

      There is an interesting article on HealthCentral (actually there are many interesting articles about living with chronic illness there):

      Steroid Brain Fog: What is your experience? by Lisa Emrich

      I'll leave you to google it.

       

  • maid_mariane
    maid_mariane carol16456

    Posted

    Dear carol

    Welcome to my pmr brain. Before anyone replied I wrote you and even made my husband wait in the car before going into the restaurant so you knew you weren't alone. I must have forgot to press send.😠

    I've been on prednisone since September 2015 and brain fog is one of my biggest side effect. I start a thought and it's gone instantly or I'm searching for a word mid sentence and I know it and it's gone. I know things and can't bring it forward.

    In the past I worked with a rehab council so I describe my brain as a combination of alhzimers, brain injury and developmental disabilities combined. My 90 year old mom who is very with it we laugh and joke between the two of us we may remember why we are out and about. Lol you have to laugh or I will cry.

    I my last position I would edit and rewrite student who had PhD 's and write reports. Sentences and words were my life and now I can't spell and even spell check sometimes can't figure it out.😧

    I pray when I get down it will be better but my taper will be exciting slow since I'm so sensitive and I've heard with some people the brain does not recover. Let's pray it's not us.

    Mariane

    • EileenH
      EileenH maid_mariane

      Posted

      Mariane - I don't want to sound depressing but has your doctor considered there might be some element of cerebral vasculitis going on? They use other medications besides pred there so a different approach might help. Just a thought.
    • maid_mariane
      maid_mariane EileenH

      Posted

      Every time I mention it she stuffs me off. I almost fired her 2 visits ago and I will make an appointment to see my GP and get another referral.

      The only reason I stay is she is great at reductions and moving times of medications to make you feel better.

      I just think I'm now fogged like the rest but will definitely ask, better safe than sorry.

      Thanks

    • Silver49
      Silver49 maid_mariane

      Posted

      I find my brain fog varies. It is better if I have been playing my piano. I can sit with the crossword and be very quick. At other times I can do all the hand signals for the meaning of the clue and still not come up with a simple word. Sometimes I find a 'big' or obscure word immediately which has been lodged deep in my brain and just comes out. I surprise both myself and my OH. My concentration is back so I am thankful for that and will live with the rest until it improves. Eternal optimist.😀😀Try not to get too hung up on it. Some of my friends have the same problem and they don't have PMR. We have wonderful conversations with lots of gesturing of hands and understand each other well.😳😳 it goes with the territory of age. Lots of information stored in the memory and some of it drops off to make room for the rest!!! 
    • carol16456
      carol16456 maid_mariane

      Posted

      Thankyou for your support , it good to know that when you need people who ' just know' they are there just a message away . I hope your recovery is a good one 👯
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