Levels of cognitive dysfunction

Sinclair

Senior Member
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I realized that I can experience different levels:

Passively reading in bed, particularly ME/CFS information in hope of discovering path to recovery, requires little effort for me, and I don't recall an increase in symptoms due to this action.

If the topic does not lead me to designing a path to recovery, my tolerance threshold and interest is much lower, thus I tend to quit pretty soon, even though I don' t feel much worst.

On the other hand, if I must actively perform a cognitive duty (writing, translating, summarizing) something not related to my health issues, I quickly identify a headache, nausea and thirst, which are the signs I experience with overexertion even though I am in bed.

How is it possible to have a pattern like this one?
 

lansbergen

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Based on what happened during my improvement I think intersection ( synapses) are blocked due to damage at the end of the axon (transport route)

Shortcuts need less energy than detours.

Probably the information you gathered regarding recorvering is stored at easy attainable places


Isn't loosing interest in something that is less important normal when not diseased?
 
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Martial

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Its most likely because you don't like doing those activities and thus it requires more effort and energy, thus you get more tired from it. It is like the difference between going to a job you love, and one you hate. If you dislike it you are gonna hold more tension and get stressed more easily. Where as things that are more interesting to you feel effortless and don't burn you out so much. I also find it interesting to see how people watch their symptoms like a hawk. Knowing every nook and cranny of their body and things that wear them down. Pretty impressive level of self awareness if you think about it.
 

adreno

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Dopamine. It's released in response to goal-oriented behavior. Since your goal is to discover a path to recovery, activities that orient towards this goal will lead to increasing amounts of dopamine being released. In other words, you are being rewarded for behavior that is likely to maximize your chances of survival. I experience the exact same thing.
 

GracieJ

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@adreno That explains a lot. I have wondered the same thing. I can spend good chunks of time Internet surfing on my iPad searching for fun needlework patterns or reading about ME, but within a few minutes of trying to pay bills or reconcile a bank statement, or troubleshoot an issue with a company over passwords or whatever, I am suddenly out of steam. I have thought maybe it was something about awareness, or emotions attached. This makes perfect sense. The activities that are chores drain me rapidly. The activities that are " happy" and open-ended seem to let me refuel.
 

Tammy

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This is from Dr. Jesse Stoff's book (he was an immunologist/CFS specialist)........."I've noticed a rather curious phenomenon that I find to be exaggerated in cases of CFS. To explain it, I'd like to characterize the patient's subjective experience of stamina (or energy) as either push or flow. What I mean by this is that many CFS sufferers find themselves having to expend a lot of effort to, say, push themselves out of bed and off to work, or push themselves to a meeting, and so find themselves always feeling fatigued.............................................................................................However, at times when they are engaged in painting or playing the piano or in some hobby.......something they consider to be fun, something they do with enthusiasm..........the energy just seems to flow. Their stamina isn't necessarily any greater, but they are no longer pushing and they rarely seem to be conscious of making an effort."
 

Gingergrrl

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I am not sure if I agree with that theory only in the sense that there have been times when I planned ahead for a very important activity, appointment or event (in which I wanted to attend and participate more than anything in the world) but I was too ill and had to miss it (but may have still forced myself to pay bills/write checks b/c they had to get done.)

This included my dad's 80th b-day dinner last year. I made the reservation and we had eight people coming and I got all dressed but I had such severe tachycardia and nausea at that time that I had to cancel the entire event (luckily we were able to re-schedule and I was able to attend) but it was incredibly frustrating and I had rested all week in preparation for the dinner.

So for me, just b/c something is more enjoyable does not mean I am able to do it (but I may be different than others in that regard?) Pre-CFS I would have agreed with this theory.
 

Tammy

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@ Gingergrrl43..........did you have any apprehension before the events that you mentioned above? I wouldn't say that my comment in previous post happens to me 100% of the time.
 

Gingergrrl

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@Tammy, no definitely no apprehension and was very excited for the events and devastated when I could not go. I had apprehension re: work when I was at my sickest b/c by the time I took a shower in the morning, got dressed, drove to work and walked several blocks from my parking lot, I was so ill, I was unable to make it through the day. Now I am on short-term disability and have not worked since Feb.

But with events where I planned to do something fun with my husband, step-daughter, other family & friends I end up devastated and in tears when I have to cancel b/c I am too ill. It is those events where I am begging and pleading to be able to create energy so I can attend like a normal person but my body cannot do it.

ETA: I do want to add with non-physical tasks, I see how this theory can apply and it is far easier for me to read something that is interesting to me than something boring or difficult to comprehend.
 

Tammy

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@ Ginger............I understand what you are saying and that has also happened to me. I don't quite understand the phenomena myself when it does happen (having more flow when doing things that I want to)
 

Gingergrrl

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@adreno Thank you for explaining and I think I misunderstood when Tammy was mentioning painting and playing the piano which are more physical tasks to me. But for cognitive tasks, I definitely do agree with the theory.
 

rosie26

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It's difficult to explain. But I find I can't juggle different compartments in my brain together at the same time. Holding different thoughts together at the same time and marrying them all up or connecting the good ones together and sifting out the ones that don't fit. If I have a problem to sort out and I have to look at each scenario I can't hold them all together and work through them properly. It takes me ages to sort things out and make decisions on things I should have dealt with sooner.

If I am focused on one thing it is easier for my brain of course . It's when I have to do gymnastics in my thinking where I run in to trouble mostly. But there is so much more to all this - reading alone can trigger symptoms because of the use of the eye muscles. It all depends how severe you are in this illness. In the severe years I had to have a note book to right down anything and everything that I had to remember. I couldn't even hold an appointment time and day in my head.
 

xchocoholic

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My brain shuts down after a few minutes regardless. Lol.

I get frustrated easily if I'm required to be competent. Like paying bills, filling out important paperwork or talking to customer service. I can't count on writing or saying the right thing.

Lucky for me the ss judge realized this quickly. Um .. I'm guessing some of you see this too. Lol. Tc .. x
 

Sinclair

Senior Member
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129
Dopamine. It's released in response to goal-oriented behavior. Since your goal is to discover a path to recovery, activities that orient towards this goal will lead to increasing amounts of dopamine being released. In other words, you are being rewarded for behavior that is likely to maximize your chances of survival. I experience the exact same thing.

Thanks @adreno this makes complete sense to me
 

Gingergrrl

Senior Member
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16,171
Thanks @adreno and that makes sense to me too!!! It is so much easier for me to read and ask questions on this board than any other task b/c I am so focused in finding recovery (and hopefully helping others in the process.) Sorry I misunderstood this thread earlier.
 

GracieJ

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Another series of posts that remind me it isn't me! I find the push/flow theory interesting, because that is how it seems. But again - mostly on cognitive things.

@Gingergrrl43

There have been many times I have had an important event on the calendar, prepared ahead, rested up, took it easy - and just getting ready and the randomness of how I am the day of sabotages the plan. So annoying, and I could never figure out why I could do some things and not others regardless of desire or need. It becomes really easy to blame something within self. It is such a relief, cognitively or physically, to realize some things are not within my control, as much as I would like it to be.

Does anyone else here find the worst of it is with tasks requiring sequences? I have had to tie a lanyard from the gear shift to my keys to make sure I remember to set my parking brake.
 

xchocoholic

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Does anyone else slur their words when their brain stops ?

I used to go for dog walks with a friend until I realized I was doing this. I stopped because it was too frustrating.

I say things like "Da kye is boo" as opposed to "The sky is blue".
Or use the wrong word or made up words. I can't write well either.
My brain can't control my hand and I join letters. Writing slow helps sometimes.

I'm thinking brain damage or neurotransmitters are clogged. Dopamine won't help this.

Tc .. x
 

heapsreal

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tasks we like to do we probably do a times when we feel better too. We seem to have a gap sometime during the day when our brain works, Im guessing this is when we do things we like. Work for example can be a set schedule so if u have had a crappy sleep or u dont get going till midday but have to be at work by 9am, then cognitive energy is going to be hard to summon up.
 
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