Is this uncommon in CIDP?
AnonymousSeptember 30, 2008 at 4:03 am
I was wondering if anyone with CIDP has had this happen to them? – I went to the mall/shopping centre today and as I came out of one of the shops, for a brief moment I couldn’t work out where I was – nothing seemed familiar – it felt so surreal. I had to look around and then I saw a familiar shop and then got my bearings. It gave me a fright actually as I was on my own. This is a shopping centre I have frequently visited for the past 20 years or so!
I know that CIDP affects the peripheral not central nervous system – so the only answer I can come up with is that I was fatigued.
I might have to buy a tag to wear with my name and address written on it!
Anyone else had this happen?
AnonymousSeptember 30, 2008 at 4:35 am
Hi! I have GBS residuals but I too, have this happen. Most usually it’s in WalMart. I can’t stand the “odors” and the huge florescent lights drive me nuts!! I’m not much of a shopper any more 🙁 Also, I have experienced driving down a familiar street and not knowing where I am. “Probably” it has a lot to do with the fatigue thing as you suggested 😮
Current medicine now acknowledges that GBS/CIDP can affect the central nervous system. To many of us have had heart issues and thinking problems.
These diseases are just one huge guessing game 😮
AnonymousSeptember 30, 2008 at 5:24 am
Yes I have had that happen, and I’ve seen other people report it on the forum here too. It’s one thing when it happens in some place you don’t visit every day but when it happens to you at home then you will REALLY panic! I think you are right though, this tends to happen to me now only when I am very fatigued – a moment of disorientation. I do wonder if it has something to do with the amount of information we are asking our brains to process – you know if you aren’t used to that amount of stimulation, plus asking your muscles and nerves to work more to get around shopping… maybe your brain just hit the reset button a couple of times to clear the buffer and start over again. I don’t know if I’m explaining myself well but at any rate it doesn’t seem to be that uncommon with us. I think I spent a whole year that way actually. 😮
AnonymousSeptember 30, 2008 at 2:36 pm
I have had CIDP for almost 11 years. When I experienced these “episodes” I was told they were panick attacks and given Xanax. Then I was told I was having depression with “disassociation”. I can fix the public places by leaving, even with a full grocery cart. The driving still gets me sometimes. I will just pull over and call somebody just to talk a minute and when it passes i travel on. I don’t feel myself panick but that is my dx.
AnonymousSeptember 30, 2008 at 7:17 pm
Thank you for your kind responses.
Yes Julie, I understand exactly what you mean – sensory overload combined with fatigue – Especially as my sensory system is worse affected by CIDP.
Judi, that’s really interesting what you said about CIDP/GBS and their association with the CNS. If you have time could you recommend any articles on that subject? Yes, these diseases are ambiguous!
Lynxgal, yes, the confusion is horrible.
Flower – Your description was so funny 🙂
Lisa – I, like you didn’t feel anxious before I forgot where I was. I only felt fatigued – that familiar CIDP “mind and body” fatigued/weak feeling – I better stop pushing myself to do chores like grocery shopping when I am feeling fatigued – but I had just about run out of food (at home) yesterday, as I kept on putting the grocery shopping off because I didn’t feel like doing it 🙁
Thanks again everyone
AnonymousOctober 2, 2008 at 9:46 am
I have had this sort of disorientation occur with me many times. I would imagine each person describes it differently. With me, I suddenly feel odd followed by a few seconds of “what is this” then a bit of anxiety attack.
Next, a panic occurs because of a sensation like this is uncomfortable.
Then it goes away. Sometimes it takes a few seconds to get my bearings straight. What I found in my particular case is that fluid accumulates in my inner ear during allergy season. It is so severe, a type of not vertigo but, like
Someone else said, a reset sensation occurs, brain fart so to say. If it is accompanied by any light dizzyness or imbalance, and occurs relatively frequently and more so when tired or later in the day
Try a decongestant, you may be suprised. It all goes away after the freeze
For me. What I have mentioned may not be a match but it sounds close.
AnonymousOctober 2, 2008 at 2:33 pm
This feeling is called Cognitive Disfunction. Brain fog and some of us call them brain farts! LOL! Many people with auto immune disorders get this with their diseases. Sometimes weather changes can cause it and you will notice it more when you see a weather change. Our blood vessels in our bodies are just like rubber bands. Put a rubber band out in the cold weather and it gets hard and freezes. Place it in heat and it softens. Extreme heat and it get’s very elasticy! Just like a door that expands and contracts with weather change! Humans do the same thing! People with auto immune disorders though it effects them more than a normal human being. When a person’s nerves get damaged it can cause our blood flow to go much slower than the average person. So what happens is our blood vessel constrict not getting enough oxygen to the brain on time and causes us to get cognitive. It comes and goes. In fact there is alot online about Cognitive disfunction and those that have this problem might pay to look it up! Very helpful in helping to understand what is going on. Can get scary if you don’t know what is happening but once you know what it is, it makes it easier to understand and deal with it. Some diseases can cause bad cognitive while others can cause only mild attacks. Hope this helped!
AnonymousOctober 2, 2008 at 10:58 pm
Thanks for your replies!
Turessa, when I was still working (couple of years ago now) I would have days when things felt surreal – I hadn’t had a diagnosis then so thought I would keep working full time until I did. Oh Boy, in retrospect I think that “zoned out” feeling was from overdoing things! If I had have known then that I had CIDP I would have taken things easier (I know, that’s easier said than done though:)
I can remember having blisters on my feet from new shoes and not even feeling the pain – I only noticed that they were bleeding! my feet were that numb.
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