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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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ME/CFS: In Free Fall Through the Looking Glass

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 12, 2014.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    Phoenix Rising Team submitted a new blog post:

    ME/CFS: In Free Fall Through the Looking Glass

    Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...

    ... [​IMG]

    If you're not a fan of hallucinatory drugs you're gonna hate ME/CFS.

    When I first became ill in March of 1992, the feeling of altered reality inside my head, the shaking which could not be seen in my arms and hands and which later spread to the rest of my body, the uncertainty with which I navigated, never quite sure I could physically accomplish a walk across the floor without falling or bumping into things ... these things were bizarre and alarming.

    The inability to think clearly, to be able to comprehend what was going on around me, pushed things beyond alarming into the territory of terror. I felt like I was dropping in free fall through the Looking Glass.

    I started out with a bad head cold, with a sore throat and severe ear aches, swollen glands in my neck, fever. I'd say I was pretty sick but it was a normal sick. After a week or so, that changed. A new symptom emerged and laid itself atop my virus-ridden state. Something started going seriously wrong with my brain.

    Inside my head ... didn't feel right. Now, I was already dealing with a bad cold, and that didn't "feel right" either. But this was different. Disturbingly different. But also not completely unfamiliar.

    Many moons ago when I was a spring chicken in the 1970s I did some experimenting which I won't go into here. Suffice it so say that this new symptom was becoming strikingly similar to some of the less satisfactory experimentation from an era gone by. If you've never done this type of experimenting you won't know what this means. But if you have it will speak volumes to you. I felt like I was peaking on LSD. And that was never good.

    Of course, if you have ME/CFS, chances are you have an all too clear recognition of what I am trying to describe.

    My senses and thoughts were a jumble of chaos rolling in a dryer on full tilt, like a kaleidoscope of confusion, full of faulty sensory messages. Was I going to fall down? Nope, but it felt like I was. Is the floor coming up and the walls pressing in? Again, no. But tell my beleaguered nervous system and brain that. Trying to talk and make any sense ... forget it. That just wasn't going to be happening for awhile. And no way could I understand what was said to me.

    Problem with this was that the peaking experience did not last an hour or two or three. It lasted six weeks. Six weeks of trying to care for my children while my husband was out of town except for the weekends. Trying to get everyone to the dentist before our coverage ran out later that month. Trying to ... think ... trying to get a grip on what was happening to me. That never happened. Even yet, I really don't know what happened.

    Here's the point though. What happened was so far beyond being tired, or lazy, or unmotivated, or living with a little pain or ... or anything we'd consider normal.

    I was 36 years old, I'd been this person for over three decades, and I know what is normal and what is way the heck from the outer limits. This is true for all of us, and that's why I'm writing this.

    We are not a little run down. We are not a little weary. We are not stressed or depressed. We are not this way because we get anxious sometimes.

    We know our bodies. We know ourselves. And we know when our lives have been turned inside out as if some alien had come to reside within us against our wills.

    This illness is bizarre. Its symptoms are out of this world.

    It's like having had too much to drink, but you weren't drinking. Still you feel like you are staggering, your hands don't function quite right, your vision can't quite focus and neither can your thoughts.

    It's like being in a room à la the '70s with old-fashioned psychedelic black light posters and strobe lighting. Only the poster and lighting combo back in the day was set up deliberately for people who wanted to feel messed up and disoriented. Out of their body and at the same time overcome by its being overcome.

    The difference here is that nobody would choose to experience this from the beginning of their day to the end of it ... maybe their day doesn't end because sleep also gets messed up ... so maybe it ... never ends.

    Who would choose that?

    Yeah. Nobody.

    Back in 1992, it did come to an end for me, fortunately. After six weeks, I was back to normal. As mysteriously as the cloud descended upon me, it lifted. I had gone for some tests, but most of them didn't take place till I was better, and the results all said I was right as rain.

    I was right as rain too, until that October, when I caught another cold. Within hours the whole psychedelia mushroomed into full-throttle surround-sound. And it brought a new symptom with it. My left arm got hit with what I thought was tendinitis, and began to swell from shoulder to fingertips. It soon spread to my right arm, so that both arms were useless and swollen. My legs had some swelling but not nearly so severe.

    This all lasted six weeks. And then, as it had earlier that year, it went away without a trace.

    That was the pattern for the next seven years. First a cold, then ME/CFS for six weeks. The cold usually went away really fast though.

    In 1999 I got a cold, went through the usual routine but after six weeks, my symptoms remained.

    I had just gone chronic. And my life began to change, as more and more pieces dropped off in ways I could never have imagined.

    You could have put me in a sensory deprivation tank and I would have been totally busy with the chatter and rushing in my own nervous system, the vain attempts to capture fragments of a thought like trying to catch butterflies when your net has no netting.

    Watch those butterflies -- whoosh! -- fly away. Leaving you with a brain that is still churning out gibberish that you still can't control. Don't worry about what it is, what is being "said" ... none of it creates a full thought and if it did, you wouldn't be able to comprehend it.

    See? This is one of the scariest things about ME/CFS.

    I don't like being crippled. I still get that way sometimes though it has been lessened by diet changes, castor oil wraps and chiropractic. But I can live with not being able to walk or do up buttons or move without pain.

    It's awful, don't get me wrong. But it's not like being thrown into dementia on a psychedelic cloud. It's not like having your brain quit working.

    I said back then that my brain felt like a big old empty barn with the doors wide open and the wind blowing through it.

    I said a lot of things. I spent a considerable amount of time trying to describe something that is well-nigh indescribable. Someone who'd never experienced it would never get it because they'd have no frame of reference for it. And someone who had experienced it wouldn't need my description ... and maybe couldn't follow it anyway. Because their brain was addled by ME/CFS.

    Still, knowing that someone else had also experienced it, knew how gruesome it is, sympathized with the enormity of what I was dealing with ... I continued to try to put it into words.

    Nobody should ever go through something as traumatizing and harrowing as this and not have at least a memorial to the atrocity. And so I continue to try to convey the carnage with words.

    We might remain ill. But if anyone on the face of this earth is unaware of this ... it won't be for lack of our trying to communicate it. The powers that be can continue to ignore us, I suppose. But it won't be for lack of our trying to get it all out there. It won't be our fault. It will be theirs.

    Meanwhile we will continue to find ways around them and their indifference. We will keep telling the truth, painting our pictures, for all of the people who will listen, who do want to know, who trust us that we're going through something shocking. And it will never be true that we left anyone uninformed that wanted to know.


    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

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    [​IMG]
    Continue reading the Original Blog Post
    xchocoholic, justy, greebo and 3 others like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    The new analogy for ME/CFS: that bad LSD trip that never goes away :D
  3. maryb

    maryb iherb code TAK122

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    Brilliantly described - as usual Jody. Thank you.
    justy and Jody like this.
  4. Martial

    Martial Senior Member

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    Well Brain inflammation and a dysfunctional nervous system brings way for 1000's of symptoms lol, this also crosses into other chronic disease states as well such as lyme.

    It sucks, and is terrifying but hopefully people do what they can and eventually things start to clear.
    justy and Jody like this.
  5. Rachael

    Rachael

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    As a long time sufferer of ME/CFS, I have often experienced this altered state you describe. It first began as a child. Usually, when I was under stress.. Though, my migraines now (and feelings of unreality) are more typical now of adult migraine, a a child, it was a very bizarre experience.

    Alice in Wonderland Syndrome (AIWS) is a neurological condition associated with childhood migraine. People experiencing episodes of AIWS report distortions of time ( time speeds up or slows down), visual distortions (things appear bigger, smaller, closer or further away), balance problems, auditory distortions and distortions of their own bodies.. Lewis Carroll who wrote Alice in Wonderland suffered from migraine, and it has been speculated that his stories arose from strange experiences he had during his migraine auras. I have often wondered if this neurological disorder was experienced by others who went on to develop ME/CFS.

    http://www.aliceinwonderlandsyndrome.net/
    Jon_Tradicionali and Jody like this.
  6. wastwater

    wastwater Senior Member

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    Yes,its a very good description of my ME/cfs head,i live in it now its my new reality,the thing I was thinking of is,it has a timeless quality 20 years of my life have just shot past and ive barely noticed.
    Jon_Tradicionali, justy and Jody like this.
  7. Tammy

    Tammy Senior Member

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    what a long.....strange trip it's been...............
    Jody likes this.
  8. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    When I first got CFS , I called it "Acid Head" . I used to love Lsd and Mushrooms . If I could find Mushrooms , I would do them . Personally , I don't drink or take any drugs like Pot . They say Pot is good for this and that . It's B/S Because it ruins tour throat . I guess in Brownies would make it ok or oil . It made me Paranoid . John
  9. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    That's too bad . If I understand right . For me it slips away
  10. KENNY-SILVERS

    KENNY-SILVERS conscientious objector

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    I drink 5 , 5 hour energy drinks at a time . It keeps me going 25 hours . Miracle Drug !!!! :)
  11. justy

    justy Senior Member

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    This is the feeling I am always trying to describe o my husband - that mkes it so hard to sit out in a busy city street and drink coffee - because I feel so overwhelmed and surpiresed at what is going on around me - I saw KDM today and he said I have brain inflammation - I just feel so out of it and that makes it so hard to be around people - and I mean not out f it in a nice way because ifee oppressed and anxious at the same time. #

    Thanks Jody for talking about this - sorry for typos - brain is dead.
    Jody likes this.
  12. Marco

    Marco Old blackguard

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    Hi Jody

    This may not be welcome but your story appears to support a notion that I've been considering lately that what many report as the initial trigger 'the flu from hell' may in fact just be a symptom of established neuroinflammation or the final straw that pushes primed glia into a sustained state of activation.

    Taken in the context of the recently published finding of microglial activation in ME/CFS (albeit in a small sample and yet to be replicated) there are distinct similarities with microglial priming/activation in the elderly where innocuous infections result in an exaggerated 'sickness response' including 'delirium'.

    http://www.ff.ul.pt/FCT/EXPL/NEU-NMC/1003/2013/3.pdf

    I noticed that all your relapses followed a fairly standard acute infection!
  13. jann1033

    jann1033 Senior Member

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    I was thinking the same as Marco. My history was similar to yours, I never got back to normal but like 50%. After 10 yrs of that huge crash, almost as bad as the first with many neuro type symptoms and slow downward spiral since. But the weird symptoms ( I would feel like my legs were about a foot above the bed just floating there, hallucinated parts if fingers where hitting the windshield really bizzare things and no previous LSD use for me.) U discribe very well.
    Jody likes this.
  14. minkeygirl

    minkeygirl Senior Member

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    justy, Jody and Valentijn like this.
  15. wastwater

    wastwater Senior Member

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    Could this be our own brain activating the
    cannabinoid
    system for pain relief. And I wonder would anti psychotics be affective
  16. rosie26

    rosie26 Senior Member

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    It felt like I was on speed too. Along with the full onslaught of the Flu-like ME symptoms and severe head inflammation, POTS, OI. I couldn't handle tablets, they made my symptoms worse.
    Last edited: May 12, 2014
    Jody likes this.
  17. Jody

    Jody Senior Member

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    Marco,

    Why did you think it might not be welcome? You may well be right in your hypothesis.

    I agree, particularly in the early years, before I went chronic, things always kicked off after a mild infection.
  18. Jody

    Jody Senior Member

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    Wastwater,

    That would be interesting. They're learning some pretty intriguing things about cannibinoids.
  19. Sing

    Sing Senior Member

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    What a description! I think you expressed very, very well the bewildering disorientation, the drastic alteration in our context for functioning. I thought of it as being underwater instead of in air, of being like a drunk, but without the alcohol, or like having glue in my brain. I thought of my efforts to think as analogous to walking uphill in deep snow. What an effort it was!

    It was not immediately that I could express what was happening. It was too unfamiliar--and like everyone, I believed it would just clear up and go away. The worse shock--besides how it didn't--was how when I became able to describe my symptoms and experience, how few believed or even seemed remotely interested. It was as if people had to shut me off as unbelievable, a disruption to their picture of what could be real. They denied my condition and many dropped me.

    I had to learn to know what was real for me, be clear about it and also be willing to carry this knowledge alone. How much I appreciated other people's interest, affirmation and understanding though, when I found it. Yet like many, I have often had to go it alone against this form of social adversity, not only the physical adversity I was experiencing. I have found the social adversity hurtful, disillusioning, frightening and absurd as well as also understandable and comic--but I have been in this position with ME/CFS for a lot of years.
    justy and xchocoholic like this.
  20. Marco

    Marco Old blackguard

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    Just that some people are convinced (not necessarily you) that everything started with the 'bug' and that they were 100% hunky dory up to that point - which may indeed have been the case.

    My experience was much more akin to this discussion :

    http://www.wrongplanet.net/postt122215.html

    But then we're all different and ME/CFS is very much a non-diagnosis.

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