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The 3 times my ME/CFS almost completely vanished...

Discussion in 'General ME/CFS Discussion' started by Antares in NYC, Sep 15, 2013.

  1. Antares in NYC

    Antares in NYC Senior Member

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    ... but unfortunately it didn't. It always came back.

    Has anyone experienced a sudden improvement, albeit short, to the point that it felt like you were "normal" again? I'm asking because I recall three unique instances when my ME/CFS symptoms seemed to completely disappear... only to come back again a few days later.

    It's moments like those that give me hope that we will be cured. It's little glimpses of such a healthy reality that make me believe that not all is lost.

    The following is a description of those three unique instances during my long 15 years of ME/CFS, when I felt such a sudden and clear improvement that I thought I was getting cured. Unfortunately, those moments only lasted temporarily. Only a handful of days out of 15 long years when I felt normal again. I'm sharing this experience in hopes that it is helpful, and maybe gives us some clues as to what could be the cause. Maybe this info rings someone's bell:

    1. Spring 2005, New York: One random day in early 2005 I woke up in my apartment completely rested, refreshed, and without brain fog. My mind was clear, I could recall things, reading was easier. I was psyched! For the previous 7 years I had not experienced a single good night of sleep. There was nothing particular or special to that day, or to anything that happened the day before, as much as I tried to find a difference. It was astonishing, and I felt that maybe the nightmare was over.:D

      Unfortunately, the very next day I woke up again with the old familiar fatigue, unrested, brain fogged.:(


    2. Fall 2009, Italy/Spain: During a trip to southern Europe (Italy and Spain), I experienced another moment of sudden improvement: I was rested, slept soundly and the brain fog lifted to the point that I had a working short-term memory! The remarkable thing about this event is that it lasted almost 2 full weeks. This sudden improvement happened about 3 days into the trip, and lasted for the duration of the trip. The itinerary included both large cities (Madrid, Rome) and the countryside, different environments, different types of weather.

      Not only did my short-term memory improve, but my long term memory was back. I was recalling events from years past, and was doing it clearly, and at a rapid speed. I was absolutely thrilled. It gave me hopes that my memories were not lost; they were all in there, but my ME/CFS prevented me from accessing them. :lol:

      I felt extremely active and even creative. Truly joyous albeit fleeting moment, since all the ME/CFS symptoms came back within two days of arriving home. Imagine my disappointment after experiencing two weeks outside of the CFS nightmare... only to have everything come back again, with a vengeance.:ill:

      Note: I have traveled to many countries and regions, and never experienced anything quite like this. What's even more puzzling is that I went to southern Europe again last year, but did not benefit from such improvement. I once felt a bit of similar improvement in Albuquerque, NM, but not nearly as dramatic. Color me puzzled!


    3. Summer 2011, New York: In the awful summer of 2011 I underwent a major surgical procedure, unrelated to ME/CFS. I was hospitalized for more than two weeks, recovering from the trauma of the operation, with heavy monitoring 24/7, IV serum, and major painkillers. A horrible, painful mess.

      Well, get this: half way through my hospital stay, the brain fog lifted almost completely, despite the heavy painkillers. For a few days I was able to read well, watched movies in my smartphone from beginning to end, following the narrative without the need to rewind every 10 minutes. Short and long term memory seemed to function much better. And even though I was not sleeping well due to the pain, my mind was clear of brain fog. I was shocked and surprised that this was happening under these circumstances.

      Soon after I was released from the hospital, the awful symptoms of ME/CFS came back.:confused:
    Why would this happen? Are these symptoms worsened by the environment? Are we exposed to toxins or bio-toxins that are stronger in certain regions? Mold toxins specific to the NorthEast? Was it the Mediterranean food? Was it the drier Southern European weather? Was it the restricted hospital diet? Was it the pristine environmental control in the hospital (clean air, etc)? :thumbdown:

    For the record, in the last 15 years I have lived in 3 different apartments, and 2 different states, so I wasn't always going back to the same apartment of location.

    I'm completely confused by those three fleeting moments when I felt I was free. I can't figure it out, and wish I could recreate whatever conditions that led me there.

    Has anyone else had moments like these? Can you recall what made a difference? I want to be there again!
     
  2. Valentijn

    Valentijn Activity Level: 3

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    I tend to do better while on vacations - basically I don't have to walk up or down any stairs, or prepare any food, or clean up anything. I think this might be enough to make a difference, especially if it lasts for a while.
     
    justy likes this.
  3. knackers323

    knackers323 Senior Member

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    I completely believe you, i have heard of this before. But this illness is a f@$king joke. It seems like everything else in the world runs off the rules of nature, cause and effect. Except cfs. It just steals your life and does what it wants. It really pisses me off.
     
  4. ukxmrv

    ukxmrv Senior Member

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    I've had the occasional part day or the miracle morning I've woken up feeling almost normal. It's been nearly 30 years for me but I remember these days well. If I was to guess at the number it would be less than 10 in total, maybe 5.

    When it does happen I take a note of the circumstances and try and recreate exactly what I have been doing. Never works though.

    I've also trying camping, leaving my belongings and going to a different country, holidays, new places to live but these don't make any difference in a big way.

    I'm also better by the sea, on holiday, sleeping in good air condiitoning. Being able to lie down on a sun lounger all day, go into the cold sea and sleep at night in a cold atmosphere helps the POTS. Plus no walking, cooking and housework.

    Doesn't do any thing for the core ME viral symptoms sadly. Also depending on the season plant/flower allergies can hit me in some countries badly.
     
    merylg likes this.
  5. rosie26

    rosie26 Senior Member

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    Same knackers323, I am fed up with it too. We are all sick to death of it. So many of us are past the 10 year mark, some over 20 or more.

    Antares in NYC

    I have had moments, an hour or two where I feel reasonable, but it never lasts. Its so nice when it does happen. I feel happy and inspired, reminds me how I used to be when well.
     
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  6. Forbin

    Forbin Forbin

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    On a couple of occasions, I've have awakened to feel much more refreshed than usual. Invariably, this happens when I have only slept for 3-4 hours, but wake up naturally.

    I felt 100% better one morning after losing three hours on a cross-country flight. I was effectively getting up at 4:00 AM (it was 7:00 AM at my location) and I had only slept about 4 hours. Unfortunately, this catches up to you later in the day and I've never experienced a repeat the next day (probably because I'm feeling genuinely sleep deprived at that point).

    I'm not sure why this should be. It's as though something undesirable is happening in the late sleep cycle, but I don't know what.
     
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  7. knackers323

    knackers323 Senior Member

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    I get the exact same thing. Nothing about this illness makes sence.
     
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  8. Antares in NYC

    Antares in NYC Senior Member

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    I think you are on to something. I have noticed a similar effect, but can't replicate it. I'm more active both physically and mentally on random occasions that involved less sleep than usual (as you said, roughly 4 hours). It's random, it involves only a slight improvement (just a percentage), and i can't replicate it. And yes, half way through the day the sleep deprivation catches up with you, and then you crash hard.

    Glad you mentioned. It has happened to me in a few random occasions too.
     
    merylg likes this.
  9. Antares in NYC

    Antares in NYC Senior Member

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    Agreed, buddy. Nothing about this illness makes a lick of sense, and I'm sick and tired of its randomness. You are basically at the mercy of CFS and can't prepare or predict relapses or improvements. Sick of it!
     
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  10. SickOfSickness

    SickOfSickness Senior Member

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    There was a story of someone doing better on a vacation near the equator, and moving there permanently and doing well. http://forums.phoenixrising.me/index.php?threads/a-remarkable-recovery-story.20820/

    If you had steroids in the hospital, that might explain a temporary improvement. I bet you didn't.

    I feel better (not recovered!) from IV fluids. It gets rid of my OI symptoms for hours. IIRC it includes cognitive functioning.
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Some of us have had remissions for a few years. I had one after an intense course of IV hydrogen peroxide and IV chelation. I didn't understand much then, didn't realize that I had probably killed off a bunch of critters and should have done maintenance.

    Didn't and slowly got sick again. :(

    Sushi
     
    justy likes this.
  12. knackers323

    knackers323 Senior Member

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    Have you tried the same treatment again?
     
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    No, because hydrogen peroxide IV's are too hard on the veins. Did more chelation though.
    Doing other things now.

    Best,
    Sushi
     
  14. knackers323

    knackers323 Senior Member

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    Is the vein damage permanent? Is hydrogen peroxide thought to be stronger or weaker than MMS?
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    The vein damage seems to be permanent. MMS is controversial, so couldn't say. I believe that IV hydrogen peroxide is considered safe--except for being hard on veins.

    Sushi
     
  16. chronix

    chronix

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    Similar experiences here. I've felt better when on abx, and when in hospital and on IV saline. Have had a few occasions where I felt refreshed after a short bout of sleep. Excessive sleep only makes me more groggy.
     
    Antares in NYC likes this.
  17. justy

    justy Senior Member

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    I am one of those with M.E who has had in the past a long remmission to near normal functioning (for about 7 years out of the past 18) I did nothing to make this happen, a[part from sleeping a lot. I also in this time had two more children and spent a lot of time sitting around breastfeeding - but then i did have a big family to look after as well - there is no explaining it.

    I thought i was completely recovered (at least to my normal - still couldnt work full time) until 2008 when i came down with the measles and pneumonia and had a severe set back that left me at 25% functioning for a few years. Now i am gradually over the past two years seeing some improvements, but i have also had these rare days or even on a couple of occasions a few weeks at a time when i feel almost like i am going to be fully better.

    For me these times only ever happen in the summer. i had 3 weeks recently after taking Armour thyroid for two months
    where a veil lifetd and i felt well! i noticed i could work all day at home and potter in the garden with little ill effect. I had a coule of walks without my wheelchair and noticed my stamina both physical and mental improved dramatically. I also noticed that i sing and hum and i dont feel anxious at all - i even thought about getting apart time job i was so convineced i would soon be 'better'

    Suffice to say it didnt last and i crashed hard for a few weeks back to where i was a few years ago and now gradually climbing back up (but to my this year baseline if that makes sense)

    I also sometimes have odd days like this - but only very occasionally and not at all in the first 3 years of this latest 'round' of illness

    interesting to hear of others experiences with this.

    Take care,
    Justy.
     
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  18. maryb

    maryb iherb code TAK122

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    I spent the majority of time as a visitor in intensive care for 4months a couple of years ago/also moved into a small newish rented house , near the hospital - it was cleaned every day.
    I felt better than I had done for a long time - even with all the stress that was involved then. My canny sister-in law who is a radiographer said she thought it was the filtered air in the unit - I was breathing such clean air for 8/10hrs a day - yes polluted environments definitely have some effect. I deteriorated quite quickly after returning home.
     
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  19. Antares in NYC

    Antares in NYC Senior Member

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    That is starting to look like a pattern, and a very frustrating one. The more you sleep, the worse you feel. Why is it? What's happening inside us for this bizarre effect? It certainly a vicious circle:

    - ME/CFS makes you extremely tired
    - Your body asks for rest, but the more you sleep, the groggier you feel.
    - Independently of how much you rest, you wake up tired and unrefreshed.

    This is awful. It is hell, frankly
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i often joke about being put in an induced coma but sometimes i wonder if being knocked out for a week and letting our little brains rest would make a big difference??
    book in for a week every few months maybe?? i think early in the illness if one can rest alot it makes a big difference??
     
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