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False Hope on Recovery

Discussion in 'General ME/CFS Discussion' started by Thomas, May 2, 2014.

  1. Thomas

    Thomas

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    Greetings friends,

    I've been sick for almost 3 years now with classic ME (diagnosed by Dr. Hyde). Although I had "minor" type pre-ME symptoms for a few years before my sudden onset. Anyways, I try and keep the hope alive that I (and we) can get better and even see a substantial recovery over time, but the truth is I have been in steady decline since my onset.

    At the beginning I was still able to work and live a semi-normal life. Now I am almost completely housebound and require assistance with daily living. Thank god I have parents that help me out (I'm 35 years old) even though I hate being dependent on others as I'm sure we all are.

    Dr. Hyde keeps telling me that people do and can get better but I am finding it hard to believe anymore since I keep slipping. And the internet is filled with people who have been sick for decades and most recovery stories are dubious at best.

    This illness is so complex and disabling and I understand everyone is different, however I'm trying to keep the light alive during these dark times - just finding it more and more difficult to do so as I've lost so much because of this wretched disease (as I know all of you have as well). I'm just not sure if I should expect to never recover and continue to deteriorate and just hope for the best, or if in fact recovery or substantial improvement is actually a realistic possibility.

    Thanks for your time and any thoughts/suggestions.

    Cheers,

    Thomas
    Ambrosia_angel, leela, Tito and 7 others like this.
  2. Ema

    Ema Senior Member

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    I try to hope for the best and prepare for the worst.

    Some days it's easier than others.

    Wishing you the best!
    WillowJ, leela, Tito and 10 others like this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi @Thomas,

    Is Dr. Hyde offering you treatment? While it is true that "recovery stories" are sometimes doubtful, many here have improved significantly with appropriate treatment.

    Best wishes,
    Sushi
    leela, amaru7, justy and 3 others like this.
  4. PNR2008

    PNR2008 Senior Member

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    I agree @Ema sometimes I feel like I'm squeezing happiness out of my life like squeezing a lemon.
    leela, amaru7, justy and 5 others like this.
  5. TigerLilea

    TigerLilea Senior Member

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    Thomas, if Dr Hyde feels that recovery is possible, does he give any suggestions as to how it is achievable?? Also, what does he think causes CFS/ME in the first place?
  6. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    I agree with @Ema too. I did nothing for years and I paid the price. When I finally started trying things I felt empowered. I can say that although I am not better, I'm certainly not worse and that is all I can ask for.

    But don't give up. Keep plugging away like all of us.
    leela, rosie26, peggy-sue and 2 others like this.
  7. jann1033

    jann1033 Senior Member

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    I've had this 26 years. I don't really think recovery anymore. I really try to make each day the best I can. At first I read every new article, study but for me that was discouraging after a while. A doctor told me after a while you develop a new "normal" so I've set my sights on making that my goal, the best new normal I can.

    You do have to remember though some like me basically had no treatments whatsoever early on. There have been advances.
    Last edited: May 2, 2014
  8. Snowdrop

    Snowdrop Senior Member

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    The fact that so many are still sick after many years may seem discouraging but there is certainly hope. For your particular case there is the fact that you have not been sick for too long and that you have found a diagnosis and have access to resources like this site to look for help.

    I would suggest that you practice what we call ART (active rest therapy). It's harder to do than it sounds. But rest more than you are presently if you can. It's not a cure but it might help slow the progression you've been experiencing. Then if you try a few of the treatments here you find appropriate/affordable to your situation you may find that you do improve.

    If you have ME you are now in this for the long run. My advice aside from rest and more rest is don't rush into anything. You're not likely to experience any miracles overnight with anything you try so may as well do your research.

    best wishes on your journey,
    SD
  9. jann1033

    jann1033 Senior Member

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    I agree about the active restIng.. That helped me have the best 12 years or so. The first 10 I did what I would have done before, try to push thru it . HUGE mistake, I kept crashing and lost more and more abilities. Once I started listening to my body and not forcing it, I felt better. Honestly it has still progressed but not as rapidly nor as severly. In fact I thought I might be OK to work minimally, stupidity coupled with no money, Lol. Now flaring again. Will I never learn? Guessing not.
    ahimsa, justy and peggy-sue like this.
  10. NK17

    NK17 Senior Member

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    A.R.T.
    Aggressive
    Rest
    Therapy
    +
    Have your antibodies to all Herpes Viruses and Enteroviruses, Lyme, Chlamydia Pneumoniae, Parvovirus B19, Mycoplasma Pneumoniae checked, because you might need and want to treat those.
    Also check your Vit D level and read about it on the Vit D Council website and supplement accordingly.
    If your family is helping and understanding that in itself it's a big advantage, especially if you're in the early stages of the disease.
    Don't despair there're people who can go in a long remission.
    Best wishes ;)
    Thomas, rosie26, justy and 4 others like this.
  11. xchocoholic

    xchocoholic Senior Member

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    If you haven't already, I'd go see an integrative doctor. They look for causes via numerous tests that most traditional doctors don't use. Treatment usually includes diet and supplements but they also treat symptoms with meds if needed.

    Don't give up hope. I only started feeling better after 15 years by eliminating my food intolerances. Gluten esp is a no no for me.

    Tc .. x
    Thomas, peggy-sue and SickOfSickness like this.
  12. Martial

    Martial Senior Member

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    It is just a matter of finding what works for you, some have been sick for decades because they did not have access to treatment, and testing that would find certain underlying causes, or other issues that would need specific treatment protocol. It can take a very long time to find all of this out when you are left throwing darts in the dark. Recently it seems this has vastly changed though, many are recognizing the issues that are stemming for them, treating it and getting recovery though it takes time in some cases for sure.

    You just need to find what is going on in your case and work on treating it from there, there is plenty of treatment and options due to the digital age we live in now, as well as the recent advances in medicine though not completely mainstream yet, things like methylation, better testing for underlying pathologies and the like. You could not be in a better time period/decade to be sick that is for sure.
    Thomas and peggy-sue like this.
  13. taniaaust1

    taniaaust1 Senior Member

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    Maybe its not sensible to think of having some full miracle recovery, thinking that way will end up leading most to disappointment but it is possible to get the ME/CFS in check so it stops sliding and from there possibly start improving slowly. Working out the hows on how to do that is the hard thing thou as each of us is different.

    It took me over 10 years to find the first thing which helped me (other then aggressive rest therapy as the others have mentioned, that helped me the most.. resting more then I wanted to) but this was back before everyone was using computers so I was alone with this illness with not a clue at what to do.

    As another mentioned you could check out methylation or one of the other areas which seems to help people with ME eg the anti viral route.

    There are things out there which will help, its just finding out which help you.

    Also look at living your life now, the best way you can. Try to adjust yourself to accepting this level you are at... getting better some will then be just a bonus
    OverTheHills, peggy-sue and NK17 like this.
  14. Cheesus

    Cheesus Senior Member

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    I think you're likely to find the internet full of people who haven't recovered because they're the ones who make the most posts. If someone gets well after 4 years they've had physically less time to post online than someone who was ill longer.

    Furthermore, not only do they have more time to make posts, they have more time to decide they want to be part of the online community. So many people lurk or don't even read much about ME online.

    Moreover, you don't know that those people haven't gone on to recover. I used to be a member of an anxiety forum and have 650+ posts on there. Towards the end my posts erred on the side of recovery, but only in one final post did I actually proclaim my recovery. As such, the internet is littered with my complaining about my anxiety but there is only one post where I am better. I am still better, but choose any of my 650 posts and it would be overwhelmingly likely that you might view me as ill.

    I also doubt most people post recovery stories because it is often not an instantaneous thing and once they are feeling substantially better they want to put everything behind them.

    Finally, I think a decent recovery absolutely is possible. My mum is forever coming home from a day out and being like "I was talking to so and so, and she said her geranium's caterpillar had ME for 5 years but got better". No doubt a few of those people won't have actually had ME (though other illnesses are obviously equally devastating). But I know for a fact that some of them genuinely did because they were treated by Dr Speight.

    I am currently bedridden. One year from diagnosis and just short of two since onset. I am always looking to see what might help me and I am confident that in time I can get a lot better. ART sounds like what I have been doing but I didn't know it was called that. When I started it I actually herxed a bit!
    Thomas, rosie26, amaru7 and 3 others like this.
  15. Asklipia

    Asklipia Senior Member

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    Thomas, I have written a long post that may be helpful.
    Here
    Best wishes
    Asklipia
    Thomas likes this.
  16. Martial

    Martial Senior Member

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    Wow great post, all I need to say. This all could not be any further then the truth as well.
    Cheesus likes this.
  17. Daffodil

    Daffodil Senior Member

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    the reality is, if you really want a chance at getting significantly better, you will have to see a CFS specialist. this will cost thousands of dollars so you must start saving if you cannot afford it now. i would suggest dr. kenny demeirleir...his testing seems to be superior to the others. the earlier you treat, the better off you will be - trust me - i have had this over 2 decades.
    xox
  18. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    You might want to first focus on not getting any worse. Getting enough rest and not over-exerting will be a big parts of this. Some of us have difficulty understanding just how much we need to rest and how little exertion is too much.

    Some things you can research here that could be helpful are pacing, anaerobic threshold, and heart rate monitoring.
    ahimsa, justy and peggy-sue like this.
  19. xchocoholic

    xchocoholic Senior Member

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    I'm not sure ART is that important. I became sick in 1990 and I'm one of those who couldn't rest after becoming ill. I had a two year old and ended up getting divorced over my illness. At which point I became a single mom of an energetic child.

    Pushing myself to the point of slurring my words happened everyday. This went on until my DD learned to drive. So 14 years.

    Since 2005, my list of cfs symptoms has been greatly reduced since I eliminated my food intolerances, esp gluten. I'm a celiac with neuro complications and several autoimmune diseases. I'm not sure what role my gluten induced autoimmune diseases are playing in my disability.

    ART, mostly just being supine to recover from oi/hypoperfusion, is now a part of my regime but I exercise every day or two to keep from getting deconditioned. I'll start getting winded when walking again if I rest too much.

    I just wanted to speak up for those who can't rest. I wouldn't want them to think that they're doing something that might make them worse.

    Also from what I've seen an integrative doctor will address diet first. They recognize the importance of eliminating intolerances , digestion and nutrition.

    From what I've seen our cfs specialists recommend this too but don't get into addressing other digestive issues like leaky gut, dysbiosis, parasites, bacteria, digestive enzymes or the vast amount of possible nutritional deficiencies.

    Tc .. x
    Last edited: May 3, 2014
    catly likes this.
  20. alex3619

    alex3619 Senior Member

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    The evidence is that most who recover do so very early on. Its also the case that near remission is more likely. People recover to almost normal but not quite, and are at risk of relapse. This is of course confused by claims from those with ideopathic fatigue, post viral fatigue, etc. Nearly everyone recovers from post viral fatigue if they do not get ME. Roughly 10% of those with post pathogen fatigue eventually get ME. Its not only viruses though. So we have post-SARS, post-polio, post-Q-fever, etc.

    It reminds me of Logan's Run. Everyone has a chance of renewal at carousel. It happens, right? Yet the number who pass the age of 30 in Logan's Run is tiny. Its all promise and no substance for most people.

    Yet I think a good many patients do recover early on. That is the best time. After 5 years it appears recovery is low. We now suspect that the biochemistry changes at about the three year mark, this might have something to do with it.
    Last edited: May 3, 2014
    WillowJ, Snowdrop, rosie26 and 3 others like this.

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