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The slacker inside - wonder how much of this has to do with CFS?

Discussion in 'Other Health News and Research' started by AFCFS, Nov 24, 2012.

  1. AFCFS

    AFCFS Senior Member

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    Dust bunnies can be fierce and are not to be trifled with. I also let them free range about for a while, but when I see them gather, as if in a horde, I wait to I get a perk of energy and then exterminate with extreme prejudice.
    I was headed to a s**t hole – some beautiful country and culture, but essentially held in chains by a military hunta. Wasn’t in the military but have found that the “government's wisdom” extends well beyond the army, noting that “Mefloquine was developed in the 1970s at the United States Department of Defense's Walter Reed Army Institute of Research as a synthetic analogue of quinine” – so if the government developed it, you know it must be good, right?

    I doubt it will come down to one med, but it is possible that CFS is caused in part by a neuro-affecting chemical, as one of some sequence of triggering factors, as perhaps suggested in this thread: Catching.Cancer (http://forums.phoenixrising.me/index.php?threads/catching-cancer.20459/)

    As an aside, where I was, there was an abundance of climate and topographical variation, and also a fair amount of jungle, so the Lariam seemed to make sense at that time. But I ponder that more now; the forces in play had bans on malaria prophylactics and treatment as they were trying to eradicate some indigenous people with the indigenous mosquito; its cheap and rather Machiavellian warfare – genocide without the overhead - but very effective. The point of ponder now being, is that at the same time, on very good intentions, there was an effort to smuggle in Lariam (small pill in a blister pack, once a week for prevention - that is a whole lot of treatment in a duffle bag). Now I am wondering if that was not a whole lot of trouble in a duffel bag, at least for some.

    - Things done, days past.

    Today, spent about two hours with a neurosurgeon for symptom evaluation and some testing, after which his initial assessment conveyed an enlargement in aspects of the brain, pressure and current or past inflammation that had apparently taken out, or flattened, my pituitary (empty sella) and compressed rather important areas of spinal cord/brain to affect function.

    This had not been caught, or at least noted, by the radiologist. And my internist, who had ordered the MRI for a pituitary check, had apparently missed the empty sella (looks obvious when pointed out), but had partially picked up on some malformation, but dismissed it as not requiring immediate follow up unless accompanied by headache. So, it was yet another self-referral, this time to the neurosurgeon to take a better look at what was going on.

    Possible causes include genetics, head trauma, previous infection with rocky mountain spotted fever, Lyme disease (not tested recently), some neuro-affecting chemical, or some other current or past viral/bacteriological component.

    He readily acknowledges CFS, but is not content with its lack of causation- so ordered another, more specific MRI, spinal X-rays, and a tilt test, etc. He also made a referral to a neurologist to get their take on it. Since my insurance is now in full coverage, he also thought a good idea to see Dr. Lapp at Hunter-Hopkins, at least for baseline testing and evaluation.

    During the session, he specifically pointed out where much ADHD (and much emotion/cognitive function linking to focus, learning, memory, etc.) is thought to be caused in the brain and the role of dopamine in that function, as well as motivation. That was an area of apparent inflammation or past effects of inflammation. So while brain dopamine may not have a causative role in CFS, it certainly can be related to CFS as a symptom.

    Also of interest, at least to me, in my intake was my history and cessation of cigarette smoking. I had smoked for about 15 years (starting while overseas - rather stressful environment, ciggs can also help keep you regular) and then becoming addicted. I had tried to quit numerous times over the years: cold turkey, nicotine lozenges, the patch, professional hypnosis, Wellbutrin/Zyban, Chantix, and even taking an extended backpacking trip in the Adirondacks with no smokes. None of it worked long term and while in the Adirondacks, I had would have smoked a twig if I could have kept it lit.

    But then last year, the urge, the addiction just left me in very short time. I went through a slight nicotine withdrawal, but I simply no longer had the desire to smoke, the reward system seemed no longer there – no motivation. Although it will likely never be proven in my case, I find it interesting to note that people with damage to the insula cortex, also have reported an elimination of motivation to smoke. That area possibly seemed affected by the inflammation.

    I understand that speaking of dopamine in the brain can be like speaking of salt in the ocean, but there are certain locations where it apparently “expresses its functionality” more than others, and with varied results. While many CFS sufferers are apparently full of motivation but lack the ability to act on it, I lack motivation and the ability to greatly act on it. Both represent a change in me.

    In that case, much suggestive pointing to the area of my brain that seemed to be or had been subject to inflammation. The articles of studies posted above, while they may have many flaws, make no presupposition or conclusion as to why people’s dopamine levels may spike in one area or another as a function of brain anatomy and its affects on neurochemistry, just the findings in the “slacker” vs. “go-getters,” and some commentary along those lines.
    - I think this is much like the word Fatigue? “Fatigue” also seems ubiquitous and many hold it not to be adequately descriptive of CFS. This was brought up in the thread “Is all of our advocacy falling on deaf ears?” (http://forums.phoenixrising.me/index.php?threads/is-all-of-our-advocacy-falling-on-deaf-ears.20165/) There I had expressed:
    Some people are also adverse to using the term Adrenal Fatigue, as posted by some in the thread: Adrenal Fatigue: A Possible Element of ME/CFS? (http://forums.phoenixrising.me/index.php?threads/adrenal-fatigue-a-possible-element-of-me-cfs.20166/)

    Not suggesting Chronic Slacker Syndrome, anymore than any other symptom word replacement of “Fatigue.”

    At one point, the doc, explaining things to me from my symptom evaluation and a previous MRI, introduced the idea of an “extended brain fart.” Sure everyone has an occasional "brain fart," mine just seemed extended. He did nuance it with a host of medical explanation, and while I suppose I could have ran associations to his initial plebeian articulation, looked up dictionary definitions, thesaurus entries, inferred all manor of things, or taken offense where none was intended, I did not. However, I am also not prepared to go with Chronic Brain Farter, even if it may seem meritorious to some, so I understand there is a place everyone must draw a line.

    And while I also never considered myself a slacker, I had noticed a change in myself, so that I did - as something inside me. My level of motivation changed from great to - greatly diminished. As for the use of the word, I use it as a US Marine might use the term “Jarhead;” it is OK to do so if you are a US Marine, it may prove regrettable if not.

    And now, I feel entitled to be able to point to an MRI with a sense of justification and say – here is the slacker inside. Albeit with a slight inflection or intonation in voice to insinuate it is not acceptable for any accusers to remain on the negative connotation of the word, but to move them along (e.g. people who may call me a slacker or have similar notion - seems like extended family not aware of day to day happenings but see the result of illness without understanding, doctors, community at large, etc.)

    It essentially works to shift the frame of reference from a negative connotation to that of understandability, using a metaphorical conduit. In one way, allowing the meaning slacker = slacker (e.g. dictionary definition and common assumption) then to stating inequality in meaning: slacker does not equal slacker, changing it to slacker is (=) an illness (or symptom of).

    In similar parlance as one who degrades one who is exhibiting a negative aspect of behavior may then be corrected by explanation of that behavior, in example: they are mentally handicapped, diabetic, autistic, have Parkinson’s or Alzheimer’s, etc., etc., etc. The behavior, with causation in hand, is then taken to be less likely a “character” or “personality fault.” And while it is not cuasitive of CFS, because CFS does not yet have a definitive cause, it points to the etiology of symptom formation.

    Ultimately, the neuro-doc seemed to echo this idea, with slight positive uptick:
    - He thought some results may be had one way or another, some improvement to be gained, some chance that symptoms could totally be reversed, but seemed less optimistic about a miracle drug anytime soon.
     
  2. MishMash

    MishMash *****

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    I went and saw Paul McCartney in concert two years ago. Talk about energy. The guy played for almost three hours. I was tired just watching him. I ran out my iPhone memory videoing the concert because he played so many songs.
    At seventy years old, he still sings all of the old Wings and Beatles songs in the same high registers. I don't really believe in "bucket lists," but after the concert, I thought I'm really glad I saw him before he, or I, passes from this mortal coil.
     
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  3. MishMash

    MishMash *****

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    The PR website owner, Cort Johnson, picked up some time ago on the unusually high incidence of 'empty sella' among CFS patients. Another patient I know very well has empty sella. She was very high achieving and now is totally disabled, living on SSDI, basically bed-ridden with CFS.

    It doesn't seem to get much attention. Basically the neurologists just shrugged their shoulders when they saw the MRI. One of the sharper knives narrowed it down to there being either a) too much cerebral spinal fluid pressure, or b) not enough CSF pressure. I'm glad eight years of medical training has rendered them so valuable at coming to conclusions.

    My opinion is, and it seems to carry as much weight as that of most neurologists at this point, is that empty sella is caused by a very permeable blood brain barrier. The pituitary is sort of a master gland, that has to constantly be testing the blood supply for hormones, chemical messengers, and responding back incredibly rapidly to maintain homeostatis. So it has to be in contact with the blood supply just enough to take incredibly accurate readings on a real time basis. But not too much, so as to compromise the integrity of your brain.

    My pet theory: the gland gets overwhelmed because it is in too close contact with the sometimes not-so-benign chemicals (both internally made, or noxious substances brought in) coursing through your veins. I think the BBB gets compromised, made porous, by infection or possibly too much adrenal stress. Where that infection or adrenal stress comes from is anybody's guess.

    In the case of this person I know, she actually developed a tumor, or enlargement, and then the next MRI showed it "popped" (that's the actual word the neurologist used). My wikipedia-based medical training leads me to think the enlargement occurred as the gland swelled attempting to deal with the unnatural onslaught of chemical inputs. Then it collapsed. But it's really interesting you presented with the same issue.
     
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  4. xchocoholic

    xchocoholic Senior Member

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    I'm learning new ways to describe the symptoms that make up my CFS. For example, the perceived muscle weakness in my legs when I tried to walk was part of my ataxia and went away immediately when my ataxia did in 2006. So clearly that turned out to be a neurological problem not muscle weakness due to lack of activity.

    Of course it took some time for me to fully develop those muscles again but the feeling that I had of completely losing all muscle strength in my legs was due to a problem in the signal from my brain to my legs.

    And this is why I'm such a big proponet of not eating toxins.

    I wouldn't doubt lack of dopamine at times but not always is connected to some of my fatigue either. Dopamine is the result of certain foods and / or chemicals we've come into contact with. I've played with this theory a little but need to go look at my research again. I "think" the thyroid is involved here.

    thanks for posting this ... x
     
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  5. xchocoholic

    xchocoholic Senior Member

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    The way this was determined is what's so interesting about this. I had no idea that they could tell where certain chemicals in the brain were via a PET. I wonder what else they can tell via this kind of test. tc ... x


     
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  6. xchocoholic

    xchocoholic Senior Member

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    Hi,

    I didn't say this but I looked and didn't find out who did either. FWIW, I believe some cases of CFS (based on our curent diagnostic criteria) can be reversed. I've met too many people over the years who've insisted I try "X" because it cured them of their CFS.

    Any ideas on how this happened ? tc ... x

    PS. My dopamine has kicked in and I'm off to do some laundry ... :lol:

     
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  7. PNR2008

    PNR2008 Senior Member

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    It would be life affirming if I could find something, anything to get me to a better state of health physically and mentally but after 25yrs of this nightmare and all the loss, I feel totally used up. It takes more energy to keep walking over messes instead of just cleaning them up. Why is that? I am totally sick, tired and unmotivated to the core of me. I fight like hell to do the priority things, then there's nothing left. Some of my friends got like this 15yrs ago, when I was still the cheerleader, now unhappily it has happened to me. It's got to be a chemical, hormone or nutrition imbalance but what and who can make a decision on which direction to take? Not me. I wear the same thing everyday!
     
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  8. MishMash

    MishMash *****

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    PNR2008,
    Many folks here are long-time patients like you. They have been suffering for many years. I suggest you go back and read the posts on this website for a year or two. It may not cure you, but people put all kinds of ideas and treatments on this forum, and one may help you. Improving your knowledge base will at least let you feel a little bit more in control. Hang in there. Good luck.
     
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  9. AFCFS

    AFCFS Senior Member

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    Thanks for that. I found the threads by Cort and replied with them to Empty Sella..Eval by NeuroSurgeon (http://forums.phoenixrising.me/index.php?threads/empty-sella-eval-by-neurosurgeon.19401/).
    Your pet theory is very interesting, but in putting two and two together and actually trying to make sense of something, you are likely bypassing much of mainstream medicine.
    WMD? – also takes care of Web-based medical training. May not allow us to write scripts or carve into patients, but at least it allows us to question those who do. Maybe Phoenix Rising could start an online program - WMD with a specialization in CFS, although would need to differentiate from University of Phoenix, the CIA's Phoenix Program, and WMD from the site webmd.com as well as Weapons of Mass Destruction. Just a thought.
    Nothing definitive, but if it works then it works. I would consider a modified version of the Ludovico technique, if it held merit.
    [​IMG]
     
  10. AFCFS

    AFCFS Senior Member

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    I have a difficult time of ascertaining when I actually got hit, but if taken taken to the longest period of symptoms, then (not to dismiss the Wreck Of The Edmund Fitzgerald lyrics) also start to find some identification with the Blue Oyster Cult Veteran Of The Psychic Wars Lyrics:

    You see me now a veteran of a thousand psychic wars
    I've been living on the edge so long
    Where the winds of limbo roar
    And I'm young enough to look at
    And far too old to see
    All the scars are on the inside
    I'm not sure if there's anything left of me

    Don't let these shakes go on
    It's time we had a break from it
    It's time we had some leave
    We've been living in the flames
    We've been eating up our brains
    Oh, please don't let theses shakes go on

    You ask me why I'm weary, why I can't speak to you
    You blame me for my silence
    Say it's time I changed and grew
    But the war's still going on dear
    And there's no end that I know
    And I can't say if we're ever...
    I can't say if we're ever gonna to be free

    Don't let these shakes go on
    It's time we had a break from it
    It's time we had some leave
    We've been living in the flames
    We've been eating out our brains
    Oh, please don't let theses shakes go on

    You see me now a veteran of a thousand psychic wars
    My energy's spent at last
    And my armor is destroyed
    I have used up all my weapons and I'm helpless and bereaved
    Wounds are all I'm made of
    Did I hear you say that this is victory

    Don't let these shakes go on
    It's time we had a break from it
    Send me to the rear
    Where the tides of madness swell
    And been sliding into hell
    Oh, please don't let shakes go on
    Don't let these shakes go on
    Don't let these shakes go on

    Youtube link, if you like BOC.

    I vacillate between finding descriptive sayings, verses and other media to help describe how I feel. And use "The Lord's Prayer," philosophical readings and other sources of wisdom that may help me on my way. If I can muster a laugh, sometimes that is the best medicine.

    - Hope you can find a sense of peace and some relief
     
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  11. Hope123

    Hope123 Senior Member

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    1) OP, if you're feeling de-motivated, particularly if you don't get any pleasure out of anything anymore, as has been suggested upthread, this could be a sign of depression. Depression doesn't always show up as sadness, guilt, or self-hate.

    2) As stated upthread, sickness behavior can cause demotivation and decreased activity, and is an attempt by the body to make the organism so affected rest to get better. Sickness behavior , in the medical sense, is mediated by cytokines in large part, which are released with infection/ inflammation, and then affect the brain so this is not all volitional.

    3) I have to chime in and say I'm another person who has never lost my sense of motivation during this illness. Like the OP, I was very active pre-CFS and now much less active but it is very clear in my mind this is due to sickness and not because I don't want to do stuff. I am fortunate esp. to have family, friends, and docs who knew me well pre-CFS so they know the new me is due to illness and not a change in personality. In fact, I stll make plans to do things -- just less intense, shorter duration, and modified activities (e.g. I can picnic outside but I can't hike).

    4) Tania's mentioning alcohol intolerance and night sweats among other CFS symptoms -- it's not just based on polling on this forum -- it's also been mentioned in scientific papers over the last 20 years. She's correct in saying ETOH intolerance was almost made part of CFS criteria at one point..

    5) Dopamine studies have been done in CFS but I don't know how relevant they are yet. http://www.prohealth.com/library/showarticle.cfm?libid=16928

    6) When I think of "slackers" I don't think of people who don't want to do ANYTHING. They just don't do the things that are considered "productive" by mainstream society. OK.........very stereotypical image of a slacker. :) ......but if you asked one if they wanted to smoke weed, listen to music, eat snacks, and hang out and chat with their friends at the lake all day, they'd do it. Not so much people with CFS. We might really enjoy something and yet not have the health to do it.
     
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  12. MishMash

    MishMash *****

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    I think we take instinctively take solace in the culture and music of our youth. I had forgotten about this BOC song. I was always impressed about how a bunch of kids from Buffalo, NY (BOC) could think of lyrics that really should not have any resonance for most teenagers,or 20-somethings. Most of us, when we are that age, thought we are immortal.

    I thought "Don't Fear the Reaper" was just another pretensious, scary rock song. I listen to it now; and think, those kids were thinking beyond their years.

    I have noticed the same thing about Pink Floyd's lyrics. I mean at 21 years old, why would Roger Waters be thinking about death, mortality, what does it all mean? I remember in college we had to read "The Wasteland" by T.S. Elliot, and listen to a professor extoll the eternal wisdom of the author's post-WWI ennui and doubt.

    And frankly I think PF has more insight into the human condition, now, then I ever saw in Elliot's poetry. If you want to test your cognitive skills as a CFS patient, or cause a crash, try and read "The Wasteland" now and follow what he is trying to say. Yes, higher learning did me a lot of good.
     
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  13. xchocoholic

    xchocoholic Senior Member

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    I just realized that I'd experienced multiple cases of "slacker syndrome" from my ex doctors.
    Their slackerdome was brought on by my "cfs" diagnosis. I'm assuming they were just too
    overwhelmed by the possible root causes or co-factors to feel motivated to look for any of these.

    And yet, they all accepted my money or my insurance company's money. So the motivating factor
    was still there.

    So did the dopamine they had when trudging through med school run out ? Or does a slacker
    attitude (aka don't give a rat's ass) override dopamine induced motivation ? ; )

    Tc .. X
     
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  14. PNR2008

    PNR2008 Senior Member

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    Eric Cohen Hallejullah
     
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  15. jimells

    jimells Senior Member

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    This is a moral judgement imposed on us by a society that cares only about profit and power. If a person can't be exploited for profit, they are a 'useless eater'. If a person disagrees with the idea of using almost all of their life force simply to survive and enrich someone else, they are a 'slacker'. Society is structured around competition, coercion, intimidation, and state monopoly of violence. Other philosophies and the people who try to follow them are ridiculed and rejected.

    There are endless trillions to prop up thoroughly corrupt financial institutions and the war machine, and there are bridges for millions forced from their homes. But they deserve to lose their homes, since obviously they are slackers.

    What about cooperation? What about compassion? Nope. No room for that here. If you can't work, you can't eat, unless you're good at begging and jumping through flaming hoops for the entertainment of the bureaucrats. U.S. society gives lots of lip service to Christian ideas, but it's all for show. Even the Salvation Army, as much good as they do, expects one to listen to a sermon in exchange for charity.

    The assumptions behind the study are despicable and have no scientific basis that I can discern. But it is useful to 'prove' that 'slackers' need to medicated into compliance. After all, anybody who challenges the established order is 'crazy' by definition, because the Borg are correct: "Resistance is futile", and resistors will be made to suffer for their resistance.

    Is a person who goes to work while deathly ill with the 'flu a hero to be admired? Or are they afraid of losing their crummy job? Or having a short paycheck and losing their lights?

    AFCFS you are not a slacker, you're just ill. And that's not a moral crime.
     
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