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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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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. Misfit Toy

    Misfit Toy Senior Member

    Aspergers? No. Aspergers can be like that but aspergers folks say outlandish and rude things at times because they have no screen. I dated someone with aspergers. They are socially awkward.

    I have the same symptoms, in fact, I felt like I was reading about myself when you wrote this. Since 1989 I have been sick. I never had this problem until about a year and a half ago. I started going into early menopause and my adrenals were shot. Add to that CFS, and social fun seemed exhausting and yes, my brain feels completely weak for days after a higher level of stimuli. I used to work in radio and love music. I cannot listen to music as much anymore. It makes me sad. I think, what happened? It's too much energy and the energy and sound and all of it just drugs me. I also loved watching tv and reading books. I feel like my mind doesn't follow it as much anymore. I sometimes feel like I have ADD. But, I don't. I think it's a virus that keeps my brain working overtime. Like I am neurologically sped up or down.

    I don't process information like I used to and people pick up on things that I don't. I feel stupid. I was quite bright in college. I am still quite bright. But people can say things that go right over my head. It's disturbing.

    I also think it's related to the adrenal glands. Light, sound, all of it triggers the adrenal gland and we don't have the reserves for all of this. We just don't.

    I never had this before. Just now.

    I don't trust shrinks and their diagnosis'. I had a shrink diagnose me as bipolar in the fall after one visit. WHY? Because she interviewed me about my family and their history. I have 2 alcoholic family members that are not in the immediate family, I am an artist and I like to stay up late....due to those 3 things, she diagnosed me as bipolar. That was after 45 minutes. WHO DOES THAT? I let her have it and then she retracted and said, "You are right, I can't say you are bipolar after 45 minutes. You are justified." OK....BYE BYE!
    Sing likes this.
  2. starryeyes

    starryeyes Senior Member

    Bay Area, California
    Oh my. I'm so glad you stood up to her. It's cool that she realized you were right.
  3. Greg

    Greg Guest

    Hi, Just signed up. I have had CFS/adrenal fatigue since 2000. I have been in a steady downward spiral for the last few years. Adding insult to injury in 2007 I had an appendectomy and a five level spinal fusion. I had hoped these would be low water marks and I seemed to improve but leveled off and started down again. Yes to getting away. I get over stimulated if to much is going on and it feeds an already anxious nature. There are studies that show hyperexcitation is easily obtained in people with CFS. Another thing I think I am jelious of everyone elses abilities to go here and there without any burden, a good reason for separation. I think the real problem is a lack of hope that this syndrome could be effectively treated. Running out of verbage. Ken
    Sing likes this.
  4. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA
    Hi Greg.

    Maybe you'll find a little hope here, or at least a place for interaction that won't over-stimulate you.

    Sing likes this.
  5. Koan

    Koan Be the change.

    Yes to all of the above - including welcome to Greg!

    I live alone with a little dog and I cherish the fact that I can control the noise and stimulation with which I must cope. I believe this is essential for us when we are symptomatic and that those of us who find ourselves in any kind of care facility (hospital, etc.) will be made more ill by lights, noise, inability to control times and numbers of intrusions, etc.

    Also, I often find speaking to someone in person much easier than speaking on the phone so it's not all about the amount of stimulation for me. In person, even standing up, I get many cues that keep me going and somehow make it less taxing while the phone taxes me terrifically even lying down with my eyes closed. I have no clue why this is.

    I am, by nature, gregarious and lively so small doses of everything that wears me out also makes life worth living. For me, the key is being able to control when and how much.

    Thanks for starting this thread, Hip!
    Sing likes this.
  6. realjoy


    Interesting! I've had this for the last several years. I call it "cocooning". There are times that I feel like I have to do it in order to center myself or de-stress. I've lost many friends because they just didn't understand why even talking on the phone was too much (it really wears me out). I never thought about it being sensory overload. I also tend to stay at home most of the time, as going out is not just physically exhausting, but all the noise, people, lights, etc, are also difficult to deal with. If I'm around a lot of stimuli, I tend to get very uptight/anxious and cranky and just need to go home and be quiet. I never knew this was a common symptom!
    Sing likes this.
  7. bee33


    I don't think it's possible to generalize about a condition that is as diverse from person to person as Asperger's Syndrome is. In addition, women with Asperger's are less likely to fit the stereotypical symptom profile.

    I posted in this thread a couple of months ago, and I have since been diagnosed with Asperger's Syndrome by an AS specialist. Since then I've been reading more about it and reading a forum for adults with AS. It struck me how often people there talk about being completely exhausted by having to spend time with other people, whether socially or at a job. For me, the exhaustion brought about by having a conversation with someone I don't know well is worse than what I experience after doing light physical tasks.

    I have had both CFS and AS for all of my adult life, and now I wonder how much of my fatigue could actually be the result of AS (not all of it, since it's much worse than anyone who has only AS), from the constant stress of having to deal with having such a difficult time every day.
    DeGenesis likes this.
  8. Victoria

    Victoria Senior Member

    Melbourne, Australia

    I have to agree with your comments about Aspergers. There are many degrees of this syndrome.

    After my 12 yr old neice was diagnosed with Aspergers & now that I have read several books on the subject, I can easily identify with Aspergers.

    As to sensory overload...........

    I went into the Chat room just once (when it first started) & very quickly got overwhelmed & unable to follow the conversation, type & post quick enough, to make me believe I could ever enter the chat room again (& I haven't).

    Even as a small child, I was quiet, shy, solitary & in my own world. In my late teens & early twenties I became more outgoing (mostly after a few stiff drinks to give me confidence).

    At 30 I stopped drinking alcohol (to give me confidence), & retired to my normal quiet existence. My colleagues from the job I left recently, would probably describe me as anti-social, but the reality is that when I'm with someone who I can relate to, I'm very extrovert & lively, so once again, it depends on who I'm interacting with.

    And when I get onto a subject I'm particularly interested in, I can ear bash someone all night.

    Having intense interests in particular subjects seems to be a common characteristic of Aspergers.

    Now that I'm retired due to chronic ill health & on my own most of the time, I am extremely happy & content. A recent family social occasion where there were strangers present, was exhausting.

    I certainly find excess noise, light & activity very exhausting. With severy myopia, deteriorating hearing & inability to move quickly, think quickly & process instructions quickly, I'm beginning to love my solitary life even more than ever.

    I cannot even think quickly or follow long threads anymore (in case any of the older members wonder why I'm not posting much anymore).

    I guess it's just all too hard to follow the Forum threads now there are so many members & so many subjects being discussed.

    Intense concentration just gives me a headache & my brain shuts down. I have to mentally put it into gear & really, really think hard to interact now.

    Having said all this, is it just a case of many of us having these same personality types, as opposed to CFS/FM causing us to have THESE symptoms.

    Maybe many of us are driven, high achievers, highly intelligent, artistic, creative types who are more suceptable to stress & adrenal overload, breakdown of immune systems & then can't cope with multi viral attacks.

    It would be interesting to do a survey of all the current members of this Forum (& maybe even guests), to see how many of us share similar personality traits & educational/career paths.

    (would be harder to do with sufferers who got CFS when very young of course, because they never had a chance to reach their full potential or get a job).

    No doubt there would be some members saying they didn't have "xyz" personalities or creative talents, but then one could also look at members who didn't THINK they had those traits. Maybe, peer pressure or upbringing suppressed some of those traits/talents/gifts, & if left free to express themselves, common traits would then emerge.

    (Am I getting off the subject here? I feel like I'm waffling on & on......).
    DeGenesis and rosie26 like this.
  9. bee33


    Victoria, I find it very hard to follow the forum threads too, for what it's worth. It makes me feel overwhelmed.
    rosie26 likes this.
  10. ramakentesh

    ramakentesh Senior Member

    Ive always thought that in CFS and Dysautonomia the brain is super sensitised in the same way the migraine patient's brain is - certain overstimulation stimuli cause increased sympathetic activity and a worsening of symptoms through cerebral autoregulation disruptions.
  11. awdbawl


    Ditto here. (Not to mention that my AQ is only 23, a point below the "average math contest winner." :victory: )
  12. Enid

    Enid Senior Member

    Very typical I'm afraid - early stages sound and light too difficult to tolerate and now a ten yearer must still shut myself (periodically) in peace and quiet and avoid too much incoming agitation from those around. Very therapeutic.
    rosie26 likes this.
  13. LazyLizard

    LazyLizard 11yrs with ME

    I so fully fit in here, it's not funny.
    Too much noise, light etc.
    Ppl speaking too fast and too loud. They have too much energy.
    I spend heaps of time just lying on the bed alone all quiet gazing into the distance.
    This helps me re-energise more than anything.
    The noise of the ducted heating is driving me nuts this winter.
    I also fully fit into the slight-Aspie category just as Bee33 described.
  14. Sing

    Sing Senior Member

    New England
    I really appreciate this thread, everyone, what you have shared! I am glad to have just re-read it all this morning. To me this is the essence of ME-CFS, the difficulty of it. There are other physical problems for me, and all of us here I know, but it is these which maybe move us out of social life and understanding the most. I also have lost friends due to these problems, missed out and not been able to keep up. I live alone, which is a blessing for pacing and rest most of the time, but it is also more lonely and unsupported than I would wish.

    This illness has been a boon for reaching out spiritually and receiving help and support from those aspects of reality. I write down these experiences and keep a dream journal too. --Though I'd not remember dreams either anymore if it weren't for the Aricept I now take. (It helps retain acetylcholine in the brain.) The Aricept helps a bit cognitively during the day and helps me remember dreams at night, which keeps me in touch with this source of meaning.

  15. klutzo

    klutzo Senior Member

    Hi all,
    Just found this thread and can really relate. I have lost friends because of the problem of being drained by talking on the phone or being in crowds, had horrible panic attacks due to loud, crowded places or heavy traffic, and so on. I spend almost all my time alone now and talk to myself. So far, nobody answers back, thank God. When people do come to visit, I feel uncomfortable, since I am now so unused to it. Very sad.

    I have a good tact filter and used to be quite friendly, so I don't think Asperger's is involved in my case, though it certainly could be in others. I agree this is part of the illness.....and I remember reading long ago that it often is partly caused by very low levels of human growth hormone.

    But, I wonder if some of what we're talking about is not just personality traits, as someone else mentioned earlier in this thread. As a former Psychiatric Social Worker, I am familiar with the Enneagram, and very familiar with the Myers-Briggs Personality Typing Inventory, which is based on Dr. Carl Jung's 16 basic personality types.

    I think it would be fascinating to see if certain personality types are over-represented among those who get CFS, since your type is established early in life. We might find a predisposing type for CFS. I could make some predictions right now, but I will refrain. (I lied...I do make one prediction later in this post.....couldn't resist).

    I like to see both the MBTI and the Enneagram type, as I believe both are a great help in finding friends, romantic mates, a good job fit, and in understanding why you just can't get along with certain people no matter how hard you try. Many companies use the MBTI tests to fit employees to jobs. They can help you understand problem areas in relationships that are otherwise working. I just think they are an all around help in human relations, and a good thing to know about, CFS or not. They look at personality from different perspectives, which is why I like to see both.

    The potential problem I see in doing a poll here about MBTI and Enneagram type, is that in order to be really sure of your type, you need to take at least two different tests each for the MBTI and the Enneagram. While many tests for both are offered free on the Internet, I wonder about some of us having the capacity to do four tests, some of which require 15 minutes of solid concentration, and virtually all of which require you to chose between two options that may both seem not to fit you. You really have to think about which choice strikes you as closest to who you really are. Do any of you feel you would have problems with this?

    If most of you feel you could handle the tests and are interested, the frustrated researcher in me would LOVE to start a thread in the Lounge on personality typing and see if we can come up with any statistical glitches among CFS patients. I am pretty familiar with the percentages of the MBTI types in the general population, so it should be easy to spot anything way out of line.

    As smart and savvy as many of you are, I am sure some of you already know your MBTI, or your Enneagram, or both, so I will sign this with mine, under my signature. For example, my MBTI type is INFJ, the rarest of the 16 types, representing only 1% of the population.

    Since INFJ's are the most psychic type and are super-sensitive to picking up other people's emotions, I would bet there will be a lot more than 1% here of that type. I can tell you from experience that being this way is exhausting, even when you are not sick, and being around others who are sick, negative, dark, or energy vampires can make us sick instantly. INFJ is known as "the counselor", so psychiatric social work was a perfect career choice for me.

    Enneagram types are valuable in other ways, and are a valuable addition to knowing your MBTI type, as you will see if you take a test and read about your type.

    MBTI Type = INFJ
    Enneagram Type = 1w2

    P.S. I agree with what a couple of you said about Psychiatrists. They have become nothing but drug company shills. The upswing in Bipolar diagnosis and the new, and IMO, totally mythical Bipolar Type II diagnosis, is due to new, expensive drugs for that condition. It is appalling malpractice.
    I had a shrink diagnose me as Bipolar after a 5 minute interview where he used a sheet of questions. I was not allowed to speak except to answer his questions. Despite knowing what I had done for a living, he tried to pull this crap on me. I feel so sorry for the naive public exposed to these people.
    I knew I had only one of the nine required symptoms of Bipolar Disorder, and that one symptom I have is also one of the symptoms of Depression, a condition for which I have every single symptom. I knew my diagnosis should be depression when I came in and only wanted help. I got none and was furious.
    I asked him how many prescriptions for the new Bipolar drug Abilify he had to write to get a free trip to the Bahamas for his family, and stomped out, after ripping up the prescription he gave me. (I am doing great with L-tryptophan supplements for my depression).
    If you have a secondary, reactive depression, as I do, I recommend seeing a therapist of some kind, not a shrink. They cannot prescribe drugs, so there will be no conflict of interest. If you need drugs, they can call your PCP and work with him/her.

    ETA: nobody seems to be reading this thread anymore. I wish I had not spent an hour typing this. I am going to go start a thread in the Community Lounge on MBTI and Enneagram just in case of interest.....
    golden likes this.
  16. Sunday

    Sunday Senior Member

    Well Klutzo, I am reading this thread...after a long absence from the forum. I'm not online much these days due to the rest of my life (or in some cases due to a lack of life).

    So I have heard recently from a friend who went to Dr. Cheney. He is convinced that it is a retrovirus, not XMRV but one that split off from it, and that is why we have weird crashes for no reason, viral cycles. Apparently this retrovirus is actually in the blood of about 7% of the people in this country, but it doesn't present itself as disease except in the lucky few.

    And here is where terrain comes in. I'd be very interested to see this personality study, because I believe that our personalities do help create a congenial terrain for the disease to evolve - though it also seems pretty clear that stress, pollutants, viral infections and other factors are also involved in making the virus active. Even more interesting to consider in the light of the fact that Cheney and other researchers believe that this virus (they're calling it gamma retrovirus, GRV) is implicated in autism, ADD, Parkinson's, Lyme, Alzheimer's, and other neuro diseases of mysterious origin. Why does it express itself as one disease in one person, another in another, and never express itself as a disease at all in the majority? Our own personal terrain would certainly be a fertile ground to look at here.
  17. klutzo

    klutzo Senior Member

    I am sorry you are feeling so poorly right now. (((HUGS))).

    I have FMS, CFS and Lyme, so I am very interested in what you posted about what Dr. Cheney said. I am also cautious, since he has seemed to change his mind a lot over the years.

    If you go to the new thread on the MBTI in the Community Lounge, you will find that Kurt already did the study I wanted to do, and got 50 responses! Indeed, he found that we appear to be overwhelmingly INFJ, which is very, very, very unlikely, from a statistical standpoint.

    Not everyone agreed about WHY this should be, or even that the MBTI is a good test. One person felt my idea might be taken to imply this IS a psychological illness. I don't think that! I don't see a separation, that's all. Like you, terrain is the key to me, with my Naturopathic training, and last time I looked, the body and the brain were connected. Despite other people's prejudice, "mental" illness just means physical illness in the brain to me.

    My take is more that modern society, being dominated the most by ESTJ's, is a physical assault upon the INFJ, making us weaker, the canaries in the coal mine, from a terrain point of view.

    Hope you feel better soon.
    awdbawl likes this.
  18. Lotus97

    Lotus97 Senior Member

    United States
    During periods of my illness I had to stop watching TV and movies. The need for quietness and solitude is common among introverts, but even extroverts with CFS are affected. In some ways it might seem as if extroverts have it harder since they have to change their lifestyle more in certain ways, but I think introverts are affected too. Most introverts do want some social interaction. I had a hard enough time making friends before my illness. Now it's nearly impossible.
  19. Lotus97

    Lotus97 Senior Member

    United States
  20. Sherezade

    Sherezade Senior Member

    Maybe i'm asking a stupid question, but can a person become asperger after he/she is an adult? Or is it a condition that you had to have all your life? I ask because i got sick just one year ago. I'm 35 years old. Before that i was a extremaly social, extroverted person. I used to loooooove spending time and travelling with friends. I loved parties, gatherings, any kind of social events. I used to made friends very easy, and had no problem talking with strangers. Anyway, a very neurotypical person.

    After i got sick, i find annoying high sounds, lights and smells. I still socialize but it's getting harder and harder everytime. My friends think that i'm depressed because they have seen so many changes in my personality. I don't accept invitations for travelling and i cant stand some social contacts that before were very easy to me. Anyway, i never had any sign of autism, i was a fast learner, and had very good results in college and in post graduate school, and never felt awkard about social contact.

    I want to add just a fact: I'm not saying that asperger is contagious, but it's curious that the guy that abused me has aspergers too.

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