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Fed up with online recovery stories!!

Discussion in 'General ME/CFS Discussion' started by tinacarroll27, Jul 9, 2016.

  1. tinacarroll27

    tinacarroll27 Senior Member

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    Hi all!!I need to let off steam so sorry for my rant!! I am so fed up of hearing all the online recovery stories on places like you-tube, where someone did some programme or had some life style alteration and they got better! They make it seem so simple and easy and I only end up feeling rotten and frustrated because it doesn't feel easy to me!! It also makes me feel guilty because I haven't got well!! I don't know if I am been unreasonable and I should just be happy for them and I know some people can improve and go into remission but I just end up wondering if they actually had ME if they got well so easy!! This video started my rant!!! Hope I don't offend with this but this women really made me angry!! Sorry again if anyone actually finds her an inspiration, she just upset me. Sorry again! End of rant!!
     
  2. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    hi
    yea it can be..but i recovered very well.
    its possible.
    i can still slip back from certain triggers but have got back high life.
    dont despair.
     
    Tammy, MEMum, Theodore and 2 others like this.
  3. Hutan

    Hutan Kina solidarity

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    That woman would be deeply annoying even if she was just giving you instructions for baking chocolate brownies.

    On top of this, she seems to be very keen to attribute her recovery to her actions (juicing, meditating, some course etc) without presenting any evidence for them.

    Three of us in my family got ME at the same time. We definitely all had the same thing and we definitely met ICC criteria. Two of us are still sick, one of us has essentially recovered. We all did the same things to try to get well.

    When I was a child, I had ME for a year and spontaneously recovered and stayed well for 25 years.

    So, some people with ME do recover (or go in to remission). I suspect that lifestyle and diet changes don't have much to do with recovery.
     
    Last edited: Jul 10, 2016
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  4. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    i think diet does help.
    high carb diet helped me monumentally.
    i believe for 2 reasons.
    carbs drops cortisol quickly alleviating adrenal overworking and insulin is vasodilatory.
    not a cure but better than nothing.
     
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  5. daisybell

    daisybell Senior Member

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    Want to bop her on her perky nose!!! Just loving the fact that 'this debilitating illness' as she puts it is helped by 'alternate nose breathing'... I mean - who knew?!!!!!
     
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  6. Daffodil

    Daffodil Senior Member

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    @gregh286 more likely it had to do with the diet altering your gut flora...
     
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  7. TigerLilea

    TigerLilea Senior Member

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    I used to believe this also, but now with everything that is coming out about our gut microbiomes I definitely think that diet is going to be a huge part of our recovery. It might not be the cure, but it is going to help in the treatment.
     
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  8. barbc56

    barbc56 Senior Member

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    Does that entail borrowing someone elses nose? :lol:
     
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  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    I think it might not be quite as simple as that. It's possible the problems in individual microbiota is a secondary affect to something more primary that needs fixing in order for the new healthy microbes introduced to colonise.
     
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  10. TigerLilea

    TigerLilea Senior Member

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    I'm wondering though that if we had eaten healthy diets pre-CFS would we still have the same problems with our gut bacteria? I certainly don't think that diet will cure us, but I definitely think it will help our bodies when a treatment comes along.
     
    barbc56 likes this.
  11. daisybell

    daisybell Senior Member

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    I ate a very healthy diet before, and still do now. Hasn't stopped me from getting sick. I don't have many gut problems but my digestion is definitely affected by PEM.
     
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  12. barbc56

    barbc56 Senior Member

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    Interesting question. Hearing the stories of active people getting me/cfs, I would guess there are those who were eating a healthy diet.

    I always, well okay not always, but generally ate a healthy diet My diet now though is much worse than it was previously to getting ill because of lack of appetite and just not having the energy to cook.

    Edit.
    Crossed posts with @daisybell.

    Missed this one by @Hutan

    . :lol:
     
    Last edited: Jul 9, 2016
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  13. Snowdrop

    Snowdrop Rebel without a biscuit

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    I certainly don't know the answer to that. I have no doubt that a healthy diet is a good thing overall. What difference it would make specifically here is unclear to me. There could be other considerations.

    I'll add that to me a healthy clean diet is also a political issue--if you are right then people who cannot afford or do not have access to this healthy diet are disadvantaged to those who do.

    But then again there are a huge number of people who don't eat well--some of them amazingly continue in good health--for those more severely compromised in terms of access to good food they may be ill but with deficiency illnesses not necessarily ME--so it seems hard to tease out the specifics.

    And--I too am fed up with confused and perhaps well meaning types sharing their bogus ME cures. People feel better when they give themselves some TLC.
     
  14. Rick Sanchez

    Rick Sanchez

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    As someone who has actually tried every healthy trendy diet you can possibly think of and has tried every sort of exercise imaginable, I can tell you that none of it has made me remotely better. I have also been taking all the classic gut supplements such as probiotics, as well as amino acid supplements and don't even get me started on vitamins. Also I hate to turn this into a humble brag, but I have had a personal trainer and all the jazz to try and help. I actually did manage to push my body pretty far, by for example benching my own body weight and being able to sumo deadlift twice my bodyweight. But that did not help my CFS in any way in other areas of my life. If anything it just made it worse. And after doing exercise that would make my body struggle and sweat properly, I would always wake up the morning after with the flu / hangover, and I would not be able to focus for the entire rest of the day. And now I have not exercised for a year because my body has become so f***ed by CFS. Sure I can still ride my bike places, but I go at snail speed. Also my brain-fog has become so bad that I had to end my studies. So can't exactly say exercise and a healthy lifestyle was a success. I used to do AP math in high school, and now I have trouble doing multiplication in my head, and I can't read anything remotely complicated anymore.

    I could honestly not tell the difference between a period where I would be eating fruits, veggies, coconut oil and meat all day or a period where I would just be sitting in my room eating Nutella with a spoon (ok I have never actually tired this, but you get the picture).

    And yes, I have also done absurd things like yoga breathing exercises every day as well as using a neti-pot. Never sticking that blue elephant penis in my nose ever again. I have also tried meditation and listened to all sorts of relaxing music, guided meditations, or nature sounds you name it.

    The thing is CFS probably covers a lot of different ''diseases'' or whatever you want to call it. So one could easily imagine a subgroup of CFS sufferers getting better with lifestyle changes, whereas others won't notice any effect at all. We like to believe that we are in control of our own destinies, and that we can therefore in some way take control our own lives, in this case by eating healthier or changing lifestyle. The truth is that most diseases just are not treatable with healthy food and or lifestyle changes.

    That being said I would of course always advise leading a healthy lifestyle. But for me, I honestly can not tell any difference and I often feel like my energy is better spent elsewhere than preparing healthy meals, which can actually be quite draining to make, especially on crash days. Luckily healthy recipes with Onions and carrots are just routine on my good days now and therefore don't really take anything out of me.

    Lastly I will be honest and say that I actually did believe a lot of the things I tried actually helped me out. I could easily imagine myself having made a Youtube video or reddit post about my ''success story'', with the intent of helping others. It is only with the benefit of hindsight that I realized that nothing worked, and the exercise might very well have made my condition the worst it has been in 9 years.
     
    Last edited: Jul 9, 2016
  15. Horizon

    Horizon Senior Member

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    I could be wrong but it seems that those who had recovered are very sure they had a viral onset. Maybe the body just needs time to fight like hell. That's my observation because those are the stories I've heard.

    Personally I have had a few viruses and high viral titers but I don't think a virus kicked in my CFS nor do it come on suddenly. It was gradual.
     
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  16. belize44

    belize44 Senior Member

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    I only wish that I had known what was wrong with me back when this illness struck me down, because I would never have pushed myself to take long walks after work (when I was still working) nor would I have tried any fitness protocol on a severely ill body. Nor would I have listened to those physical therapists, who pushed me into doing pool therapy followed by using exercise machines. After the first week I crashed so hard that I had to cancel the rest of the therapy. I finally had to accept that exercise made me more sick! Once I understood that, things got a bit more manageable. Now when some PT starts chirping about graduated exercise, I simply flat out refuse to do it.

    As for supplementation, I have tried just about everything. Now finances are even tighter, and I have had to give up some of the things I was taking. And I don't feel any worse, so who can tell if they were even helping?
     
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  17. geraldt52

    geraldt52 Senior Member

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    I think a lot of the "success" stories, at least the ones that aren't from a person who was actually depressed for a few weeks, are exactly this phenomenon. Everyone wants to think they're getting better from supplement X...and not wasting their money. Doctors want people to think they're getting better...and not wasting their money. In fact, I think doctors propagate more of these myths than patients. Worse, if you're not getting better it must be because "you may get worse before you get better". At any given time over my 30 years of CFS, I would have said something or other was "helping".

    In the end, everything I've done, everything I've taken, all the money I've spent, all the hope that I've had, has been nothing more than nonsense. I've now pretty much ignored all the "treatments" being offered up for more than a decade...and I've sometimes felt better, and I've sometimes felt worse, just as I did when I was trying to "treat" it.

    How can you treat something, how can a doctor treat something, when you don't know what it is? We just have to wait for the research, but I sadly think that time is running out for me. How old can you be, how long can you have been sick, before recovery is just a pipe dream?
     
  18. ErdemX

    ErdemX

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    I watched the lady's video and honestly I didn't feel bad at all :) I'm happy that she got recovered and for some lucky CFS sufferers, it seems possible to recover with constant effort. And for most of us, it seems nearly impossible to recover, whatever we try.

    It seems clear that even though we all have heavy, constant fatigue, there are subgroups and probably different conditions which can be all inside the CFS/ME basket.
     
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  19. ebethc

    ebethc Senior Member

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    yeah, the comment about "commitment" is patronizing and myopic... as if that's what distinguishes ppl who recover from those who don't!

    I think WHEN you start getting the RIGHT tx matters a LOT... if I had gone on antivirals right after mono in 2001, things would be so much better... hypothetically, someone could get the right tx at the right time, and not suffer nearly as much as others... OR they don't have CFS at all.. it's frustrating, especially for those of us w families that don't support us or understand
     
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  20. Tunguska

    Tunguska Senior Member

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    I feel estranged even from these forums sometimes because people talk so much about recovery and I'm far removed from that concept. For me all there is, is daily survival pure and simple until the day I die. Every thing I do has the singular goal of supplying enough function to avoid losing what I have left. That's it.
     
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