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Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
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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. xchocoholic

    xchocoholic Senior Member

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    Great description @Jody. My experience has been very similar to yours but my body fell apart after 1 virus and multiple rounds of antibiotics, possibly flouroquinolones. I just found out last year that I get frozen shoulders and knees from these.

    For me, the most terrifying part was that most of the medical professionals I saw either treated me with disbelief, disrespect or disdain or all three.

    I'd never had an unexplained medical problem before and the horror of literally feeling like I could die from lack of medical care and leave my child motherless was too much. And I even had a long list of documented symptoms including ataxia, myoclonus, fibromyalgia, muscle spasms, etc.

    Like you recent changes in diet, esp gluten for me plus a few supplements and a supportive doctor have made life enjoyable once again. Granted after going thru the hell of unexplained "cfs" symptoms enjoying my "life" is completely subjective. A healthy person would feel devastated by my limitations.

    Tc ... x
    Valentijn likes this.
  2. PNR2008

    PNR2008 Senior Member

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    I had my first complex migraine at 11, while at the blackboard I couldn't do multiplication and the sister knowing something was amiss said so and told me to sit down. I went home for lunch and didn't return for a few days.

    It was the confusion and mental problems that came at the beginning of a migraine. I could walk home and see the street but not my hand. The aura and movement in my head made strange things normal, the numbness and tingling in my limbs and face was scary. When all that cleared the worst was yet to come, the pain and who was screaming hurting my ears? Oh no was that me?

    This nightmare taught me many things, how to pass as normal when not and keep quiet, nobody believed me anyways. The attention getting ploy was the worst explanation for my headaches. Sound familiar? Not being able to articulate, walking sideways, no problem. I've been here before. You awful know-it-all doctors and nurses, I know you too.
  3. Sing

    Sing Senior Member

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    We have some powerful writers on this forum!
  4. Jody

    Jody Senior Member

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    Sing,

    You described it pretty well too.:)

    You describe the weirdness of how people (don't) react to what we say about what we are going through. And possible reasons as to why they don't seem to react. It is an experience that is hard enough to believe when you go through it, I guess we shouldn't be surprised that people who haven't had it must think we're exaggerating or something.

    Thank goodness we have this place where we are understood.
    Sing and rosie26 like this.
  5. Jody

    Jody Senior Member

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    Marco,

    I know in my case that things weren't hunky dory up till that point. I had been run down, had been exposed to toxins in various environments, ate a lousy diet because of being poor, and lived in a state of terror for many years due to said poverty. I'm guessing that the virus seemed to be the straw that broke the already strained camel's back.
  6. Jody

    Jody Senior Member

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    PNR2008,

    Your harrowing description, except for migraines, sounds like some of what I went through, as well.

    I had to laugh when you mentioned the "attention-seeking" assumptions. I remember my dad jokingly(?) referred to all the attention I was getting from being sick. Really? I never got less attention in my life.
    Sing likes this.
  7. Jody

    Jody Senior Member

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    We really do. And some of them have popped up in this thread.:)
  8. Jody

    Jody Senior Member

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    Xchocoholic,

    I have had major problems with shoulders and knees off and on since all this started. I don't know if any of this would help you. I have had relief at different times from chiropractic, acupuncture and castor oil wraps. Also taking omega 3 oil seems to have been making a difference.

    I had a few specialists treat me decently though they couldn't help me. My GP of almost 2 decades suddenly started treating me with disrespect and disinterest.

    I too am much better than I was ... but normal? No, I also deal with ongoing limitations that most people would find shocking if they were at all interested in hearing about them.
    xchocoholic likes this.
  9. Tammy

    Tammy Senior Member

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    Jody...........you have mentioned using castor oil packs............are you using placing the wraps over your liver area?
  10. Jody

    Jody Senior Member

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    Tammy,

    No, that's not what I'm doing. That sounds like something my mom used to do at our naturopath's suggestion for IBS. She'd lay a saturated cloth on her stomach for an hour in the evening -- she'd do it watching TV in bed. Within a few days her IBS was much better and after a couple of weeks it was gone.

    I have used it on hands, arms, feet, and knees at different times when I had pain and swelling. An hour, twice a day, would save me from two months of recovery time. By the next morning, I'd find a bit of relief and a couple of days of this regimen would find me back to normal. Well. My normal.:)
    Tammy likes this.
  11. cheri

    cheri

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    I feel the same way, sort of...WHOOSH, 20 years...and yet, every day, minute by excruciating minute. This is the best description of how my head feels that I've ever read; it also depicts the irony that I so often encounter. It is so articulate and well-written, yet I know _exactly_ how the head felt, while writing it. In the moments that the illness allows us, we remain SO much more articulate than it _feels_...and yet, we also know, how much _better_ we were, when well...and how fleeting, the best although still terrible, moments are.
  12. Jody

    Jody Senior Member

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    Cheri

    There are times when I feel like I've got a head full of snakes, and just keeping myself sitting up and not vibrating off of my chair is all I can do. Yet at the same time that my basic physical wellbeing is being slammed by the unseen onslaught that is ME/CFS, I am somehow able to be coherent and articulate in my description of it. Just one more bizarre thing about this disease.

    Another irony about living with this. Now that I once again am able to be coherent and articulate (something I was not able to do a decade ago) I, like many others, am compelled to get some kind of awareness out there about what we go through. Nobody should ever have to endure something like this without it being noted -- it should never just pass without other people seeing just how awful it is. But that very articulateness almost seems to contradict what is being said. If you have a brain full of goo, how is it that you can speak so well? Surely it can't be as bad as you're describing.

    No, it's worse that I can ever describe.
    Tammy, cheri and rosie26 like this.
  13. meandthecat

    meandthecat

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    It was the 'otherness' that I could not explain to friends who had not experienced it for themselves in those halcyon days when I hammered away on the doors of perception. For all my efforts they hardly budged.

    It is that same otherness that now unites me with those that have ME and separates me from those that still reside in Kansas. Kansas seems like a nice place from here.

    My mis-spent youth came in handy after all. When the ME struck I was curious as to what could do this to me, when up became down and the world I knew tumbled away from me. When left in the ruins of a shattered life, still I was the neophyte; the looking glass world was curiouser and curiouser till I encountered the 'red queen' of the Health system.

    Eight years on and I have rebuilt the foundations and ground floor of my psyche, it is tougher and more resilient. There is no grand plan, I do what I can ,when I can, how I can.

    As a new psyche grows, it is obvious that I am not the same person as I was before ME; I am wiser but not as clever, I am differently able,I am more fun to be with but can't be bothered with emotions, I do more with less but lack vision. I have lost so much and there will not be space for it even if I could reclaim it.

    I struggle to understand this process, does it have a name? Is there an outcome for me to anticipate. To just call it LIFE is to allow it to pass unremarked, at the very least it needs a warning sign.......

    DANGER: unsafe ground cats caterpillars and rabbits Proceed with Caution
    greebo and justy like this.
  14. Jody

    Jody Senior Member

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    Another great writer. Just sayin'. :)
  15. wastwater

    wastwater Senior Member

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    I always think this effect is due to excessive cytokine signalling and always think of Interleukin 2 just because it was mentioned in oslers web as those folks had sky high levels.I don't see IL-2 mentioned as often as other cytokines in research but I always felt IL-2 fit well for me.High levels of this lead to depression/psychosis with thyroid problems as seen when it is used in cancer treatment.The question I ask is why do I need all this extra signalling,is it to get my t-cells to work as they should in controlling b-cells,so there must be either a genetic flaw or infection affecting t-cells.I think this can be called Toxic Encephalopathy and maybe but not sure leukoencephalopathy.Ive never had a cytokine profile done or an MRI, I would be interested to see if this is true. :)
  16. Aerose91

    Aerose91 Senior Member

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    "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."

    Alas, this description IS this disease for me. The bad part never came and lessened. 2 years ago this happened to my brain and has only gotten worse since. There has never been 1 minute of slight relief from the psychedelic, psychotic cloud. :(
    Last edited: Aug 23, 2014 at 1:44 AM

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