1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

Has anyone on this site cured him or herself of CFS/ME? Did I?

Discussion in 'General ME/CFS Discussion' started by overtrain, Oct 23, 2013.

  1. overtrain

    overtrain Medical Mafia needs to die via this virus.

    Okay, I know this will sound strange, but I'm really starting to wonder if I'm just about free of this.

    Has anyone here either gotten over this or known anyone who has? Anyone who got better slowly, then did not relapse at all? I ask because i keep-extremely slowly- improving, and am where i can leave the house days in a row with zero post-exertional fatigue after biking. I also just too several weeks to pack up everything I own and move alone... up several flights of stairs. Sure, i was tired, but that would have tired me sans illness.

    Best part is cognitive function has vastly improved. I caught the flu, got mono, & went very downhill from there in Sept. 2011. 2 years later i can almost stand sounds, bright lights, plan ahead, find things, and don't lose myself midsentence.

    Last, I am totally paranoid about ever getting the flu again and actually lay awake at night worried if I am "over" this or nearly (provided there IS such a thing) that maybe someday it will all come down on me again even worse than the initial CFS/ME. I keep reading reports that when it reoccurs, it's even nastier, more debilitating.

    So, anyone been lulled into thinking they were over this want to comment, too?

    Thank you so much,
    Overtrain in iowa, us of a
  2. vamah

    vamah Senior Member

    Messages:
    574
    Likes:
    643
    Washington , DC area
    I don't have a response to your actual question, but would be very interested in hearing what kind of treatments you followed that got you this far in your recovery. It is great that you have made such progress. I hope it continues.
    overtrain and SickOfSickness like this.
  3. lnester7

    lnester7 Seven

    Messages:
    1,142
    Likes:
    1,003
    USA
    I have been there a few times. My advice is still be aware of signs. And make sure to work on your immune system, eating well, good supplements...... I relapse every time exercising.

    I know a few that are mostly normal with some lingering symptoms but overall ok.
    Allyson and overtrain like this.
  4. chronix

    chronix

    Messages:
    61
    Likes:
    58
    There's some kind of general consensus that you have to wait 5 years before you can claim recovery. Think this rule is related to cancer, not sure so don't quote me on that.

    Did you notice a turning point in your illness - a date when things seemed to start improving, if you look at your illness retrospectively?
    overtrain likes this.
  5. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,793
    Likes:
    893
    US

    There are some reports, but few.

    The problem is usually we can't know if they really had ME/CFS. (Maybe they just had adrenal fatigue or parasites dragging them down, which they are now cured of, or many other things it could be.)

    Still I would be very worried about a relapse if I ever had a remission. If I knew what thing(s) caused my improvement then I would be less worried, in a way.
    Allyson, overtrain and SOC like this.
  6. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,793
    Likes:
    893
    US
    Also if a patient told me they were cured, I would look at:
    (These are just my opinion from reading experiences.)

    How long they were sick - the less time, the better chance of a real full recovery.

    How bad they were at their worst, and during most of their illness. If they were milder, it seems more likely.

    Good physical condition and health before they got sick may mean more likely to have a full recovery.

    Also younger age may be good.

    Was the recovery a slow progression of getting better and better?
    Snowdrop, overtrain and SOC like this.
  7. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,793
    Likes:
    893
    US
    Also many of the "cured" people still know the difference between their former health and now.

    They can lead full lives and are very relieved about that, and most of us consider that cured, because of their functional level. But they are not 100%.

    There could be some at 100% but I doubt it. I think it's like a healthy person having a serious injury. They may be fine after healing, but not 100%.
    WillowJ and overtrain like this.
  8. minkeygirl

    minkeygirl Senior Member

    Messages:
    2,031
    Likes:
    1,272
    Left Coast

    My first thought was just that. How long were you sick and how sick were you at your worst?

    I don't know if anyone who was housebound ever got significantly better. I'd be happy to just stop the progression at this point.
    overtrain likes this.
  9. overtrain

    overtrain Medical Mafia needs to die via this virus.

    thank you! Are your relapses solely exercise-related, or also due to another variable, do you think? And when you have a set back, does it ever reach the intensity of your original illness, or start of this whole thing?

    Watching the signs, supps, resting, good food are really key for me as i have always pushed myself harder than anyone i know. Thanks again.
  10. overtrain

    overtrain Medical Mafia needs to die via this virus.

    SickOfSickness
    Oh yeah, this is CFS.

    I did have adrenal fatigue and believe I had parasites (after many cleanses, stopped seeing weird things in toilet).

    I have no clue what 'remissed' me but did feel a big turn after dealing w methylation issues.

    thanks for your reply. :)
    Wayne likes this.
  11. overtrain

    overtrain Medical Mafia needs to die via this virus.

    SickOfSickness
    Well, i have only been sick a bit over 2 years. Far less time than most ppl on this site, probably.

    At worst, I got too weak to go to the ER anymore, or to walk or prepare food. I started putting affairs in order, or tried, but i was so out of it i couldn't even accomplish a simple list, a handwritten will, anything. I was crawling to the bathroom few times, & holding onto rails & taking a few steps at a time.

    I acknowledge many have it worse than I had it. I have been housebound since dec. 2011, & this past summer started getting out about once or twice a week on my own for groceries.

    Physical condition right as i got sick was peak; the best i have ever been in. I biked over 1,000 miles in less than 6 mo., & was very, very active DAILY, with no breaks in terms of physical activity at all (due to living sit.). Not sure, though, how health in general was, as i had lost a lot of weight and was too thin already. But i was rarely sick and am a lifelong vegetarian, eating excellent food, supplements, juicing, etc.

    Younger? Nope. Old. Got sick at 49.
    Recovery was *ridiculously* slow. I really saw zero improvement, just a downhill slide for many many months. I do get the sense i am still on the upslope, but if this is the best i will ever feel again, i'll take it. I was so low i wanted to die, just die, to make the suffering and medical abuse go away... Thanks
    rosie26 and Wayne like this.
  12. overtrain

    overtrain Medical Mafia needs to die via this virus.

    SickOfSickness
    Yes, i see what you mean re the not 100% all the way back to normal (i broke my jaw once, & it works fine now, but not 100%).
  13. overtrain

    overtrain Medical Mafia needs to die via this virus.

    minkeygirl

    Thanks for the reply. I answered some of your q's below... I felt the same way about the progression... I made the mistake of STILL pushing myself during the early stages, but then, i also had the tired-wired thing bad. I seriously never thought i'd have my life back. I've been through a lot but this illness? I hope those darkest days/months are a low i'll never have to experience again. I'm so glad i hung on. We are all warriors, true troopers, each & every one of us.
    Wayne, SickOfSickness and rosie26 like this.
  14. overtrain

    overtrain Medical Mafia needs to die via this virus.

    chronix

    Hi. I did notice several turning points! Maybe too many to list here. Great Q.

    I have kept a log of symptoms periodically, my temps (had ongoing fever for endless stretches), new things i was trying, even my thoughts to be able to look back & decipher if it was, after all, in part a nervous breakdown (LOL. NOT). I'll try to find them & post back at some point.

    Turning Points:

    Doxycycline. Definitely knocked the fever out FINALLY (ordered that off pet food site).
    Dexamethasone. A friend gave me about 20. That temporary boost was phenomenal. Who knows but might have switched something back on. If i can ever figure out how to get 'em again, hel yeah.
    Isocort. Def. improved me. Even just hydrocortisone gel still helps me daily.
    Herbs, raw. Started feeling a difference when i upped raw teas.
    Green powders. This, too, helped. It's like each thing has been incremental improvements... However, i'm leaving out all the disappointments- & there were MANY heartbreaking instances where i'd read about a thing that helped someone on this site, buy it, it would seem to work, then cease. Ugh.

    Basically, it was not any one instance where i thought maybe i'm improving. It was an accretion of tiny things. Maybe the 1st instance was noticing i could take stairs without having to pull self up via handrails. At another point i saw i didnt have to touch handrails. Another was walking up stairs without having to preplan it. The victory! Was taking them two at a time!! And the first time w that i rem. thinking, hey, i used to do this ALL the time! (Was so happy i emailed everyone the news).

    Noticed hair under arms and on legs, a few, growing in. That had stopped entirely the whole time.

    Sleep... When i started sleeping, not only sleeping, but the entire night AND waking up better than going to bed. I used to feel so much worse when i got out of bed than when i got in it.

    Turning point was not losing things as much, not stopping mid-sentence confused re what i was just saying. Being able to READ!!! I cldnt read for a year and 1/2. I cldnt follow simple directions, not even verbal. Cldnt even read bus sched, make basic calls, nor show up for appts. At some point i regained ability to RETAIN info.

    Exercise! No longer knocked me out for 3 days to bike to get food. Ability to walk out front door at all much less unassisted was bigtime.

    Appetite. Started getting that back. Gained weight finally. And stamina just walking around my house. I could walk without dizziness. Headaches went away. Neckaches still here but working on those.

    About 6 mo. Back i rem. sensing i was 2/3 the way through this, that i had a ways to go but there might be better days. I can't emphasize enough how much i thought i was dead meat, & that if the rest of my life was going to be this bad, i didn't want to keep going. I would wake up and sob. I'd cry every single day. All i had was this site to not lose it entirely.

    So i'm dreading prospect of losing it all again then to a lower point than i was. I'm lucky i'm alive at all, because the final ER visit, i told them i felt like my organs were shutting down. Yeah, they dismissed that. Hang on. You never know what the next 24 hrs will bring.

    Last, as an aside, i would feel my symptoms change within the space of AN HOUR when i was at the worst. Thought i was going crazy. Just recently i read somewhere on here that that can happen in CFS/ME. god bless founders of phoenix rising for this lifesaving resource.

    Good luck
    rosie26, Wayne, Lou and 2 others like this.
  15. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    666
    Australia, Melbourne
    also It is a weird illness in that you may have worse and better periods - without them being actual full relapses and remissions

    I agree that exercise then can undo all the remission

    Ally
    overtrain likes this.
  16. lnester7

    lnester7 Seven

    Messages:
    1,142
    Likes:
    1,003
    USA
    Yes everytime was excercise, I can specifically remember what I tried: Second one I started doing Gillian video (the lady from The bigger looser), After a week ended in bed with a relapse that lasted 1 year. Third relapse time I started running. I was completely normal at that point. I run on and off every 2minutes first day for 20 min. Second day only could do like 6 minutes running couldnt even finish walking the 20. I Stopped and took over a few days later, only could do 2 minutes running and that sent me to bed till this day, that was a 2 year relapse and still trying to get out of it.

    Like you I think is key to treat infection/sleep/hormones.... and go heavy on the nutrion. That is the only way out. I am in a pretty good path to feel normal again most of the time.
    overtrain likes this.
  17. minkeygirl

    minkeygirl Senior Member

    Messages:
    2,031
    Likes:
    1,272
    Left Coast
    Sorry unable to read that, I have problems with too much text.

    So 1. How long were you sick and 2. How sick were you? Homebound or still able to work?

    mink
  18. overtrain

    overtrain Medical Mafia needs to die via this virus.

    minkeygirl
    I can't help you with your rdg issues. :)
  19. overtrain

    overtrain Medical Mafia needs to die via this virus.

    @Inester7

    Wow! Sorry to read that... I will now really watch overdoing exercise. Have you tried detoxification at all? Ever take L-Glutamine after exercising? Does anything seem to help?
  20. overtrain

    overtrain Medical Mafia needs to die via this virus.

    Yes, & that's one of the supremely confounding things about this is how weird it is with better and worse times apropos of nothing and it just keeps morphing like Frankenstein. Thanks for the post.

See more popular forum discussions.

Share This Page