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Need for Quietness and Solitude - are these typical CFS/ME symptoms?

Discussion in 'Cognition' started by Hip, Feb 26, 2010.

  1. maryb

    maryb iherb code TAK122

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    I know this is an old thread but it resonated with me today as I was thinking this morning if I described my life to anyone they would think I have agrophobia. I definitely don't have Aspergers or Autism - but I feel exactly like Hip.
    I know when I am feeling better these symptoms relsolve a little and I am able to socialize - travel a little etc. So for me ME is the root of it all.
     
  2. perchance dreamer

    perchance dreamer Senior Member

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    I have a real problem with sensory overload, too. It reminds me of the opening of William Alexander Percy's poem Home:

    "I have a need of silence and of stars;
    Too much is said too loudly; I am dazed."
     
    justy and rosie26 like this.
  3. Lotus97

    Lotus97 Senior Member

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    I'm sure there are some good psychiatrists, but I agree with that assessment about not having faith in psychiatrists. Don't get me started on doctors...

    I've improved my mental health over the past few years through self development and spiritual teachings more than all the years I spent with psychiatrists and therapists. If anyone does think they have Asperger's, check out the link I posted on the second page of the thread to the online tests. Now my doctor prescribes my psych meds. Much simpler except from time to time she suggests I see a psychiatrist and my response is basically
    [​IMG]
     
    PennyIA likes this.
  4. Lotus97

    Lotus97 Senior Member

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    Nice poem. I feel more calm after having read it.
     
  5. taniaaust1

    taniaaust1

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    I have an offical Aspergers diagnoses so will answer your question.

    No one cant get Aspergers as an adult.. sure ME/CFS may give you many Aspergers symptoms but it isnt Aspergers.

    One part of Aspergers diagnoses is based on ones childhood and what one was like then as one has this illness from a child. Even when I got diagnosed at 40 I think it was, they still had to get reports from people who knew what I was like as a child before theywould give a diagnoses.

    Things which helped them know I had Aspergers on to of all the bad ME symptoms I have now (which make my Aspergers worst so now I cant hide it and it really stands out) was

    1/ As a toddler.. I could be sat in front of a tv and I'd stay there not moving until someone came and got me.. just staring at the screen. (my mum says I was such a good good baby due to that..but it was my Aspergers).

    2/ If I didnt want some kind of food.. I'd throw it across a cafe in it was placed before me (yeah I know young kids do that anyway but I was terrible with that..something which makes me stand out to me mother 43 years later compared to my sisters). I was completeloy black and white with things and couldnt be tempted with something I didnt want.

    3/ I had much trouble making friends and went throu most of my schooling without them... kids hated me, they didnt understand me so I even was bashed.

    4/ My love towards animals was far greater then people. To this day I dont have many feelings at all towards my mum and dad.. not sure if I'd feel anything if they died.

    5/ I did a common Aspie thing of "hair twirling" around and around my finger for hours (some Aspies eg my daughter do other things such as rocking), I also used to do things like stick pins in my fingers cause I looked the sensation of turning myself into a pin cushion.

    6/ Always in trouble as I'd misinterpute things, didnt understand menthors.. Im still learning some now, I took them literally. eg I only a couple of years ago leant what "call of nature meant" I thought it meant someone going out and talking to trees. So many common sayings I dont understand.

    7/ I hated being lied to so much. I still dislike my mum for lying to me as a child 30 years later
    .
    8/ I'd be late for school every morning even thou we lived almost next door. I couldnt organise myself. I was in detention so much for that that they ended up giving up with giving me detention for it.

    9/ I'd pick a fight at school with the school bully as a stress relief thing as I didnt know how to get rid of my stress naturally.. so whoever was severely bullying me.. I'd arrange a school fight and then nearly kill the guy (other students would have to drag me off)

    10/ I punched my year 5 teacher. (I cant really what that was over but I lost it.. yet again due to not being able to deal with high stress.. or maybe she made me look into her eyes..I hate having someone look hard at me due to thier eyes).

    Getting an Aspergers diagnoses at 40 years after seeing about 7 psychologists who couldnt undertstand me, and 3 psychristrist and all those missed the diagnoses. I FINALLY saw Autism experts who diagnosed (diagnoses for Aspergers has to be done by 2 Autisim experts in agreeance where I are), helped me make so much sense of my past.

    My daughter has far worst Aspergers then I and went thoru school with learning difficulties too but never got a diagnoses either thou she was under a psychologists from 4 years old till she was 13 cause she wouldnt cooperate..eg if she wanted to walk out of school in primary and got to park at 6 years old, she just would, if she didnt want to go to school as a teen she wouldnt. She never would clean her room.. I dont think she cleaned her room properly once her whole childhood (the most I could get her to do is hide her mess under a bed).. nothing I did could make her do it.. her psych had no solutions in the end.

    (interesting her Aspergers manifests so different to mine.. she's a real extrovert.. loud and obnoxious who in real life just talks and talks. She'd bite people till the age of 10. Refuse to shower as a 10-11 year old (no hygeine). She had no safety concepts so needed one to one in primary at play times to keep her safe and had no time concepts.. She still may not be able to read a clock even as an adult. At 20 she's having a hard time getting her licence as she confuses her right and her left, her boyfriend has spent past 2 years trying to teach her her directions).

    Most aspie Females often learn to hide their Aspergers far more then males and hence when I got older eg by the time I was 16.. I'd learnt to blend in and how to hide my issues.

    Anyway.. if you have Aspergers it will stand out most in your childhood.

    ps my long posts are an Aspie thing.. its very hard for me to stop once I get going with something.
     
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  6. HowToEscape?

    HowToEscape? Senior Member

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    I have a general rule about shouting on the net, but the answer is

    your symptom is ABSOLUTELY typical for this disease

    We (most that I know of) experience noise as an assault. A few people who were oblivious to noise before getting sick, had a tv blaring in the background, are now partly deaf etc, may not reach this point. For the rest, anything that stimulates the nervous system creates exhaustion, and certain things such as surprising noises, are *poison*.
    I'll take a guess that banging doors, stomping from the floor above, and other random impact type sounds now disturb you in a way they did not do before and which 95% of people you meet cannot comprehend.

    "Also, a closely related thing: Nowadays, I am particularly bad at following the background context of the information in front of me."​

    I was formerly resented for being too smart, was working on a dull but highly detailed system which controls call centers (such as when you call the IRS).

    Now I cannot follow even science-y blogs on the internet. I'm not speaking of research papers , merely the public stuff such as on realclimate. I had to stop working bc I suddenly could not comprehend a paragraph of new information. Don't know about conversations, as I now cannot go places and meet people to have them.

    Welcome to the club.
     
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  7. maryb

    maryb iherb code TAK122

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    HowToEscape?
    I agree totally, you've explained it perfectly. I too had a good working brain and am now the same as you describe yourself, people say we need to educate ourself about the illness, hard when you can't follow research papers (which I used to love reading) thats why I'm ever so grateful for those who are able who post the simplified explanations.
    As to how I explain this need for quietness and solitude to friends and family - that is so hard.
    If you are upright and look relatively okay? they don't understand what's going on in your head and the distress it causes to the body. What I do know is that when my body feels better these symptoms diminish too.
     
    merylg likes this.
  8. Marco

    Marco Old blackguard

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    merylg and Enid like this.
  9. Lotus97

    Lotus97 Senior Member

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    I used to live in an apartment where my neighbors played very loud music when they had parties on the weekend. I'm not exaggerating when I say that that was a traumatic experience.
     
    merylg likes this.
  10. Lotus97

    Lotus97 Senior Member

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    taniaaust1
    That's interesting that we both got a 34 on one of the tests because it sounds like your Asperger's was more severe than mine. Did you by any chance take the other test with 150 questions? Since it seems that there's little doubt that you have Asperger's maybe you don't want to waste taking the test. I realize these tests aren't 100% accurate, but it would still be interesting.
     
  11. Arise

    Arise

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    Hey Hip, I can certainly relate to this.

    If a person is introverted then he/she will find other people draining if they spend too much time with them. When you add the mental fatigue that comes along with cfs/me then the desire for solitude will be ever more present and greater.
     
  12. awdbawl

    awdbawl

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    :wide-eyed::thumbsup: Wow, Klutzo: that is an EXCELLENT observation (even if I myself am an INTJ, it still applies in my case as well).
     
  13. maryb

    maryb iherb code TAK122

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    I was in no way shape or form introverted before ME - I come from a large family and was never happier than when in the hub of conversations, we laughed and argued loud and hard, difficult for outsiders sometimes.
    I've always been ultra sociable, my friends saying I made too much effort for everyone.
    ME has made me what I am today. I live in hope I will get a cure and be able to resume my former involvement in life especially with my family.
     
  14. beaverfury

    beaverfury beaverfury

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    Decades before getting me/cfs i had periods when i would mentally burn out. But never physically.
    I used to have to take it quietly for a couple of days to get some strength back in my brain.

    I don't know if this was some indication of genetic tendency to me/cfs.

    I was never loud, bursting with energy, super robust or extraverted. But i was fit, healthy and sporty.
    I tended to be quite solitary otherwise. Turned out to be good training for me/cfs because this illness changes you into a misanthropic hermit.

    I used to crank classical music up LOUD and found it thrilling and cathartic. Wagner, Richard Strauss, Mahler.
    The other day i turned up the volume on some Liszt to revisit the loud experience, but it just belted my system. Took me a while to recover. My nervous system is snot these days.

    Music doesn't hit me emotionally like it used to either. I'm more fragile but my senses are not as keen as they were.
    Same goes for feeling emotions like love or sadness. They just don't have the same intensity as they used to have.
    Put all this together with other me/cfs symptoms and i've got a good reason to hunker down in a corner of my cave and think about what might have been
     
    maryb likes this.
  15. Aerose91

    Aerose91 Senior Member

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    @Hip
    For what it's worth I feel the same way. I feel that my brain function has declined so much that I can't process the complexity of my environment and I'm so far gone that too much stimulation can cause me a completely loss of touch with reality and subsequently psychosis.

    I basically never admit this to anyone though because everyone just immediately pings me with depression and wants me to seek help for depression or stick me on anti depressants. They just can't understand my cognitive difficulties
     
  16. Aerose91

    Aerose91 Senior Member

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    I am EXACTLY the same as this. The biggest social butterfly you've ever met beaten down to less than 100 words a day
     
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  17. DeGenesis

    DeGenesis Senior Member

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    Buying a pair of custom earplugs was one of the best investments I have ever made. They are not like the foam earplugs that make everything sound muffled. They simply turn down the volume. You can actually hear people more clearly if it is really loud, like at a bar.

    Another great investment was a pair of FL-41 tinted sunglasses, which are supposed to reduce the incidence of migraine in fluorescent lighting. I wear them in any situation where there is fluorescent or LED lighting and I find them to be very helpful.
     
  18. InChristAlone

    InChristAlone

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    Over-stimulation is totally normal for me. My brain kind of just overloads and my body is like, "oh no no no, you need to stop." A lot of different things can over stimulate my brain- talking for long periods of time, listening to others talk, trying to multitask, etc. Honestly, it all really depends. But I do know when I've gotten to the point where I need people to be quiet, and I need to be alone.

    For quite some time, I have struggled to give in when that happens. I know that sounds like giving up, but sometimes just surrendering to what you're body is telling you the right thing to do. I've had CFS for a little over five years, and I still have my moments where I'm like, "No, I want to do that! I will do this." But fighting like that gets me nowhere good; it leads only to frustration and anger. When I find myself there, I really need to just throw my hands up and say, "God, I can't handle this" and let Him do what He does best.

    I'm actually recovering right now from over doing it last Monday. It really knocked me back, and it can get really frustrating, seeing that you were okay for awhile, and now something as simple as being out and about too long as thrown you for a loop.

    My suggestion is when you're over stimulated and need to be alone, then be alone. Don't feel like you have to force yourself to go another minutes. When you're body is finished, you know it. Just don't lose hope when that happens. You're not alone in your struggle, believe me.
     
  19. ebethc

    ebethc Senior Member

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    yes, I definitely get sensory overload. Crowded shopping centers seem like a nightmare - the whole idea of "Black Friday" is crazy to me!

    I feel better when I have time to myself, but I really love being around interesting people... I find it energizing. Unfortunately, more people are draining to me... Loud people, or opinionated, unreasonable people, or angry/aggressive people. I hate being so dependent on my environment to be able to concentrate, or feel content, but it's the way it is...
     
  20. Sing

    Sing Senior Member

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    I just re-read this page. Probably could benefit from reading the whole thread again, as I forget so much. Yes, this all applies to me--speed, intensity, noise, too many facts, multi-tasking--I have little energy for. They wear me out so fast they are not worth it unless I must deal with it--no choice. I think this could have to do with the poor autonomic nervous system, the poor sympathetic nervous system. Trying to activate and use anything involving fight or flight or adrenaline, such as the above, causes rapid fatigue. Add to this, trying to do these things standing, or walking or even sitting up straight for a long time, makes it harder, maybe impossible.

    I used to like all that stuff and do it. I didn't choose to stop. Just lost the ability. A lack of capacity fo exertion, is what it comes to, and the need for quietness, rest and lying down, to allow the brain speed and system to slow way down. Then it can recover, catch up and re-balance, although this may take hours, or days or weeks, depending on how far out of bounds I or we pushed.

    At the other end of the spectrum of capacity are top athletes, human or animal (like race horses). They too exceed their limits when they compete, and can need considerable rest periods afterwards in order to be equipped to do it again.

    The normal, expected capacities in life in relation to us are like the extreme performances of top athletes. If we do it once, others expect we can do it all the time. I feel so frustrated by this. Here is why a doctor may not find us "ill", if we have rested up for days in advance and prepared for hours to present. The doctor sees and hears no problem. Then we have to lie down and rest for days afterwards. Our retreat is silent and iincapacity nvisible.
     

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