The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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This disease is bizarre!

Discussion in 'General ME/CFS Discussion' started by Sandman00747, Apr 11, 2016.

  1. Sandman00747

    Sandman00747 Senior Member

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    Hello all, I am a longtime watcher of this and several other boards but rarely post although I love to read and gather info and opinions. I have recently had something most incredible happen to me which I know should interest everyone. In the end I don't know if it was truly a good experience to have or not.

    Let me start by saying I have suffered from this plague for 20 years. It came upon me as an encephalitis in the '90's. I went through 2-3 years of the initial hell most all of us have been through. But I kept working through it other than I was initially off work for 2 weeks when I first caught it. I have always worked with this though many, many times I have thought about going the disability route as my mind and body are a shadow of their former self. But the worst thing for me about this disease is that it has simply sucked the lifeforce out of me. I know most people here can relate to that statement.

    About three weeks ago I had a miraculous event come upon me. I was sitting at my computer just as I am right here, right now, when all of a sudden this warm feeling came over me. It was the most wonderful, incredible feeling that I haven't felt in oh so many years. It started in my head where I could first feel the fog totally lift away, and then the cranial and neck pressure slowly but completely melted away. Then, my numerous joint paints instantly subsided along with the 20 year spinal cord ache. Then, my vision began overwhelming me as details greatly sharpened and colors now exploded before my eyes. My sinuses, throat, and chest all but instantly cleared of all congestion. It was easily the greatest feeling I have ever had in my life. It was a miracle! No, this was not an 80, 90, or 95 % remission. This was 100% full tilt back to my old self and it was truly orgasmic! I felt cured!

    For the next 3 1/2 days I was cured! People instantly noticed the real me was back. And, no, I was not a fool. I didn't go jogging or play full court basketball or skydiving or anything crazy. No, I didn't go out and eat chili dogs and banana splits. I guarded the new me like a soldier! It was electrifying to feel like this again. Life was good again!

    Then, 3 1/2 days later while going to bed I noticed a touch of "that dreaded feeling" right before I fell asleep. The next morning I awoke to feel the real me had left once again and the last 20 year feeling was back as strong as ever. I cannot tell you the depression this brought upon me. I keep a journal as I'm sure many of you do. I have been over that journal looking for clues or anything to help me find out why this incident ever happened to me. I can find nothing. There is no hint, no pattern, nothing. And let me tell you that tasting complete health for those days was just so overwhelming.

    What is this thing? What did my body do that beat it away totally for that short length of time? Can my body do it again? Should this give us all some degree of hope? I just don't know anymore. All I know is that was the best feeling in the world for the short time I recaptured it! This disease is bizarre. Maybe I should have had that chili dog! Take care all and have hope. Has anyone else ever experienced this short term 100% remission? Anyone? Buehler?
     
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  2. Antares in NYC

    Antares in NYC Senior Member

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    Yes, yes, yes!
    I experienced something very similar in three occasions, but the last one of the three was the clearest and longer lasting remission. I totally feel your pain. I had a taste of full normalcy, only to be taken away again.

    I did share those experiences with Phoenix Rising in these two threads:
    It was quite a pretty bizarre, yet amazing feeling, but then the condition came back as it was. I have not had a remission since 2011, no matter what I have tried. Brainfog and cognitive issues have been worsening in the last three years.

    I know you said you kept a diary and found no patterns. That said, sorry to still ask you: did you recall doing something different in the days or day prior to that remission? Any different medication? Any new supplements? Anything unusual in your diet? Do you have a gut feeling about anything that you did, took, drank or ingested that could have precipitated that miraculous short remission? I'm very curious to learn if something indeed made a difference.

    Best regards, and thanks for sharing your amazing experience.
     
    Last edited: Apr 11, 2016
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  3. alex3619

    alex3619 Senior Member

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    I have had this experience dozens of times, but for me its nearly always for around six hours. CFS is not about gross dysfunction in my opinion. Its about dysregulation. So if your body can pass through a phase where its regulating stuff right you can improve dramatically in a very very short time. It then slowly fades away. I have gone to bed feeling great many times, only to wake up feeling the usual exhaustion and other symptoms.

    In fact, one dramatic case had me in my slow walk-shuffle going to see a movie. I felt good coming out, and didn't feel like I needed a bus or taxi home. I lived only a kilometer or so from the cinema (actually two cinema complexes) so I decided to walk. I felt great, why not? Then half way home I felt so good I decided to run the rest of the way. I suddenly had a lot of fitness restored. I felt great, not exhausted, when I got home. Then I went to bed. The next morning was so very disappointing.

    Anyone who says we have exercise phobia is clueless.

    This convinced me the damage is temporary for the most part, due to how the body command and control systems fail to work properly. Those systems are neurological, hormonal and immunological.

    If we ever get to really really understand ME and CFS, at least my subtype, and develop a cure, then recovery wont take days, or months, it will take hours.
     
  4. belize44

    belize44 Senior Member

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    I have had that happen quite a few times. At first the remissions would last months, then it became weeks, then days. I always looked at what supplements and foods I had been consuming but never found any clear cut answers. Frustrating for sure!:confused:
     
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  5. NL93

    NL93 Senior Member

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    Very Interesting. I have not experienced complete 100% remissions, but i do have very weird fluctuations in severity. I regulairly have moments where i go from brainfog so bad that i feel like i don't even own a brain, to feeling relatively normal. It never lasts.

    What it does show is that there is probably not too much permanent damage and that this disease might actually be very curable if scientists figure out the mechanism behind it.
     
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  6. actup

    actup Senior Member

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    A two week full remission happened to me only once in my 12 year me/cfs history. It was so dramatic I remember the dates in early October, 2007. The main negative to having a brief interlude of normalcy early on was I really believed I'd get better. I didn't learn to really pace myself until I became bed bound in 2011 and 2012 :(
     
  7. rosie26

    rosie26 Senior Member

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    Happy for you @Sandman00747 :balloons::)

    I have never really felt free of this illness. I have had moments when out walking, where I feel like my old self and there is an exuberant spring in my step and I just want to run but from past experiences of this I know the moment I start walking faster for a few minutes I will get the flaring of my symptoms. My ME is always there, but sometimes it dampens down a bit for a few moments and I get a very small taste of how I once were.
     
  8. helen1

    helen1 Senior Member

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    Yes! I get lots of moments of feeling normal and I usually guard them carefully but sometimes feeling great takes over and I overdo things. I've had half days of normalcy more than a dozen times.
     
  9. cmt12

    cmt12 Senior Member

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    Let that experience give you hope and to not settle for chronic pain.
     
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  10. alex3619

    alex3619 Senior Member

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    These experiences are in part why I went back to University and grabbed a biochemistry degree. I wanted to understand it.
     
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  11. taniaaust1

    taniaaust1 Senior Member

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    im wondering if you have been meditating or doing yoga as what u described sounds like a fairly classical "kundalini experience".

    a kundalini surge thou usually triggered by spiritual practices can thou also happen out of the blue. you may be able to end up triggering this off again via kundalini yoga or certain meditations but i strongly suggest if u try that to find yourself an experienced teacher as this can become dangerous or can trigger off other things which could be very hard to handle, it can alter a persons whole reality of things. (one person i knew had to spend 3mths in a mental health instituation after he triggered it too much off).

    those who believe and experience kundalini, believe it lays dormant in base of spine till it starts to awaken. kundalini then travels up the spine, cleaning any energetic blockages as it goes. note - energy blockages in an area causes pain...so a kundalini surge may clear spinal aches and pains and this energy can also flow then to other body parts. kundalini generally as it does this, causes warmth and very pleasurable orgasmic sensations, aperson will notice its affects all over

    it then hits the head and it isnt uncommon at this point for colours to become brighter and everything to become more vivid and clearer, one has more clarity of mind to and can get sudden insights.


    once someone experiences this once, they are likely in future to get more kundalini surges but maybe not as intense as the first awakening of it but it all can depend on the things u are doing. (a yogi teacher who has awakened kundalini can easily often trigger it off in his students or it can be triggered by another via what is called a shaktipat,

    if this goes off too much before someone is really ready for it,it can cause a lot of different issues including headaches or pressure in head or at top of the crown. you could feel all kinds of weird feelings at top of head, crown chakra with this as it opens it (if you start having very weird experiences, dont worry you arent going nuts as it may be due to all this).

    due to how you described your experience, i believe your temporary healing was a spiritual one
     
    Last edited: Apr 11, 2016
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  12. Deltrus

    Deltrus Senior Member

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    I sometimes get little remissions, I believe that they may be the period between high immune system activation -> viral suppression -> immune system lowering -> viral reactivation.

    At the same time, it also may be a time when your body isn't struggling to heal, so you have a high amount of available nutrients for neurotransmitter and hormone production. If your body is sucking up nutrients then you tend to feel shitty as your blood levels of nutrients plummet.

    If all the stars align, sometimes you can feel really good!

    The warmth for example, may be a type of immune suppression caused by the nervous system or hormones, which also coincided with several other factors.
     
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  13. Mel9

    Mel9 Senior Member

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    I really hope so!
     
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  14. Chrisb

    Chrisb Senior Member

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    I am sorry for @Sandman00747 that the remission did not last for longer and know well the feelings that are brought on by being pitched back into the old condition. But, on balance, it gives hope to feel that the impairment is potentially remediable.

    For the first ten years after an acute viral onset I used to have a cycle of relapse and remission. Suddenly I would realise that for five minutes I had been prowling around the room and looking out of the window, and within an hour I might have gone out for a walk. The relapses could be equally dramatic. I would feel that I had a very short time to get home and get to bed, where I would remain for the next two to three days.

    It always felt as though the body was trying to repair itself, but simply could not sustain the effort.

    It would be interesting to know whether those of us who have had this sort of experience shared the same type of onset.

    We should perhaps not be surprised that the psychobabblers are unaware of the full range and extent of the condition on which they purport to be experts. We, and the bodies which are supposed to regulate them, should be alarmed at their apparent unwillingness to listen and take note of these reported experiences.
     
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  15. lansbergen

    lansbergen Senior Member

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    I know the feeling but it does not last long. I call it salutary warmth
     
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  16. Sandman00747

    Sandman00747 Senior Member

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    Alex, I totally believe I learned two valuable lessons from this experience which you nailed right on the head. I now completely believe like you do that most if not all of the damage done by this disease is temporary and not permanent. This should give all people hope, especially the younger ones. I say that only because after X number of years with this condition we all start showing our age in one way or another. And, some mornings I must admit I have some trouble separating age from symptoms at least for a short while.

    And I also agree with you that from the way my remission occurred, that when a cure is found, it will only take minutes to hours to recover. I would love to just sit and watch the looks and actions of thousands of us one by one as we are administered " the cure." I wish I had a video of my episode as I'm sure it would be entertaining to have seen my expressions after 20 years of misery!
     
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  17. Sandman00747

    Sandman00747 Senior Member

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    Antares, I read through your experiences and they were most interesting! That's amazing you have had three episodes of this. I have been through my journal over and over and finally found one small clue or pattern. Like many of you my body temperature has always run low since catching this disease, sometimes as low as the mid 96's F. On the days leading up to my complete remission, my body temperature was continually rising clear up to 98.3 F. on the day of the remission. So far this is the only clue I have.

    On the positive side my body temperature has been consistently higher since the event, usually in the mid 97's to low 98's F. Might this be some small degree of hope? (small pun intended). And, I haven't felt nearly as bad as often since the event! Has anyone extensively tried artificially raising their body temperatures by some means, via sauna, sun, etc. for any good length of time? I've got to think this virus or whatever thrives on our lowered body temperature, although I've seen some people that often have fevers, but I believe that's usually early on in the disease. Maybe I will try some hyper thermic therapy. Who knows?
     
  18. Sandman00747

    Sandman00747 Senior Member

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    Deltrus, may I ask how long your " little " remissions last? Are they always about the same length of time? Are they always of the same "intensity" or percent of remission or do they vary?
     
  19. Sandman00747

    Sandman00747 Senior Member

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    Taniaaust1, Funny you would ask those questions. I have no formal training or instruction in meditation or yoga or anything really. And, although I am not a real religious person, I am very spiritual. So, I guess in my own way I do meditate all the time seeking to overcome this malady. But, at the time it occurred I was simply looking at some sports cars on the computer. I know. How lame! I wish I could say I was meditating at the time but I was not. I hope you are right and I do experience more surges. Thank you so much for your keen insights! I will do some reading on what you have shown me. Thanks again!
     
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  20. Marc_NL

    Marc_NL Senior Member

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    Don't mix up cause and effect ;)
    It could as well be the case that since you are better for some reason your body temperature starts rising.
    I also have no idea. What I do know is that I usually don't do well on higher temperatures.
     

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