International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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False Hope on Recovery

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

  1. amaru7

    amaru7 Senior Member

    Dr. Hyde is a good doctor and if he diagnosed you, you have it.there's a reason why he doesn't do treatment, he thinks there not many who get better with treatment. Still every case is different to another, so me is not me. For me personally the issue is mitochondrial, so I go with Dr myhill. You might check her website, she gives all the information there.

    It's a bad disease that does actually ruin lifes for many, and the first step is learning acceptance for you. It took me more than 15 years and still I've not managed to accept my disability totally, so I know this will take time in your side, but one thing is for sure-you have to learn it.

    I'll try some treatments but as I hope for the best, I'm prepared for the worst.

    Best wishes
    You're not alone in this mate
    Thomas likes this.
  2. Cheesus

    Cheesus Senior Member

    I'm still in that golden phase, just short of two years ill, but only just over a year and a bit since being actually debilitated and having to leave work. I have seen a number of your posts on the forum and I can see you are something of an ME Master (think Jedi but with more lying down). As such, I am keen to know what advice you have for newbies like me?
  3. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Learn to pace. I wouldn't say I am a master, but I have been doing this a long time. Then again, maybe that is what a master is, and if so there are a few of us. Jedi meditate, so why can't we lie down a lot? ;)

    The more you stay within your energy limitations, the better you will be. This does not mean full rest all the time, but it does mean you cannot push. Every time I pushed myself I got worse. Not pushing gives you the maximum chance I think. If you are breathing hard, you are doing too much. If you feel worse after doing something, particularly the next day, it was too much. Respecting your own limitations, which are unique to you, will be a good thing even if it does not lead to full recovery, as it will lesson the risk of a decline. Pacing sounds easy but it isn't.The temptation will always be there to do too much, and a lot of the time it will seem as if you have to do more.

    Find out what diet works best for you, something healthy of course. You have to eat anyway.

    Pacing and diet are low cost, unlike doctors or expensive medications. Whatever else you can do you can probably do these two things.

    If you can afford it, and can travel, go find a really good ME doc. There are not many around.

    There is a chance you do not have ME anyway. Very few clinicians are reliable at diagnosing it. I am not even convinced Dr Hyde is reliable except in this sense: if he says someone has ME he is most likely right. If he says they do not then he could still be wrong. We need fully validated biomarkers. There are quite a few being investigated, and at least one looks very promising. Not having ME can be a good thing, as the odds are that recovery will be easier.

    Severe post viral fatigue for example can take years to recover from. It does not always lead to ME. Yet in time these patients make full recovery.

    Finally, keep learning. The antidote to badly informed doctors is well informed patients.
    Cheesus, WillowJ, daisybell and 4 others like this.
  4. Thomas

    Thomas Senior Member

    Thanks everyone for the replies. @Sushi Dr. Hyde doesn't treat but I knew that going in - he's excellent for information and knowledge on ME and he's been very helpful for my disability process. As for treatments I've already done Valtrex, GcMAF, a fecal transplant, Rifaximin, Chelation and several other things without much success.

    I guess everyone is different. And so far I've really sucked at pacing which I guess hasn't helped things.

    @alex3619 it's possible I may not have ME but I'm pretty sure I don't just have a post viral syndrome since my clinical and symptomatic picture is a lot different from a regular post viral syndrome that seems to generally improve slowly over years without severe cognitive problems and relapses. Furthermore, my ME started after a flu vaccine and I have several other comorbitities such as hypermobility, OI/POTS, depression/anxiety, and life long IBS - which seems to be more of an "ME" type picture - at least in my opinion.

    At this point I'm not really sure what to do. In fact, I don't even have the energy to pursue new things - just the basics are tough enough at the moment. I hope that some new energy is around the corner to help motivate me to try new things and perhaps see another doctor. Anyone hear anything good about transcranial magnetic stimulation? I know Dr. Bradstreet is very big on it these days...

    Also, can things progressively get worse at the beginning and then turn a corner after a few years?
  5. Charles555nc

    Charles555nc Senior Member

    Unfortunately there are many costs and waiting times for Lyme Literate or CFS Literate doctors. CFS can have bacterial issues and Lyme disease patients can have viral issues, so get the usual suspects checked out, epstein barr, lyme, mycoplasma, c pneumoniae, cmv, bartonella are the first to come to mind.
    (As you can guess Ive seen lyme and cfs doctors and was positive for XMRV)
    Heres what worked for me in my case:
    Thomas likes this.
  6. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    You might focus more on that pacing. It doesn't do a lot on it's own, but I think it likely that nothing else is going to do a lot without it.
    Thomas likes this.
  7. Ambrosia_angel

    Ambrosia_angel Senior Member

    I think the best thing to focus on is improvement and not recovery. When I first can down with ME I went from going out every day to being homebound overnight and was so overwhelming especially when I was search all over the internet trying to find cures and seeing that recover is so small. I thought I'd be like this forever.

    But like others have said most who do recover don't post as they are living their life and a online community isn't their only source of socialisation and support like it is for many of us.
    I've been 90% bedbound and regressing for a long time but after being in so much pain and so weak, I'm making small but amazing improvements. Being able to stand for 30 minutes with little pain is such a big achievement for me but I'm not recovered. I'm just small improving and it feels great. It can feel like you'll never get better when you regress and there's so much uncertainty because nobody really knows the cause and not all of us can have access to the treatments people on here have. BUT there are ways and sometimes it takes a little experimentation to find them. Don't give up :)
    amaru7 likes this.
  8. amaru7

    amaru7 Senior Member

    Yes I heard about cases that develop exactly just like this, so yeah while I cannot say if this will be the case with you, I can tell you that it happens
    Ambrosia_angel and Thomas like this.

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