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My ME/CFS Story

Discussion in 'Alternative Therapies' started by flutterbytans88, May 27, 2012.

  1. justy

    justy Senior Member

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    I do think that, to borrow a term from the 12 steppers, i can be 'in recovery' i feel that i am currently in a recovering mode - hopefully back to a long partial remission, like the one i had before. I see recovery as a process, with varyinng degrees of recovery along the way.Two years ago i was severely affected, at about 25%. Since then i have been moderate/severe, then moderate, and now experiencing some 'mild' days, mixed in with moderate and the odd severe day or days.
    To me recovery doesnt necessarily equal cured.
    All the best Justy.
     
  2. Hope123

    Hope123 Senior Member

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    I'm sorry you're getting a lot of flack as a new poster here but I can understand how the other posters feel.

    I have a science background so don't take this as an attack but please tell me what research shows that yoga or tai chi helps people with ME make an improvement. I'm genuinely curious. A lot of sites/ people say this sort of stuff but they don't back it up with actual studies or with studies involving people with ME/CFS, rather it's about people with "chronic fatigue." The studies that DO involve people with CFS don't often use objective measures of improvement (like how fast or how far that person can walk or exercise afterwards without experiencing their CFS symptoms) but rather rely on only asking people how they feel, which is a subjective and not objective measure. This type of science would not be acceptable for other medical conditions due to issues like the placebo effect and people answering positively due to pressure or wanting to be viewed well by the researchers. As mentioned, do read the other threads people have posted, esp. in the Latest Research section.

    And I would second Calathea about how a positive attitude doesn't equal improvement in the illness itself. Personally, I am a generally positive person (pre- and post-CFS) and people who know me well know that about me but those who don't assume if I happen to be happy when I see them that my health MUST be improving. I tell them if I let my health dictate my mood, I'd be down in the dumps all the time but I don't. However, what it does show is they don't realize the effort I and others put daily into maintaining a hopeful attitude DESPITE difficult circumstances.

    Finally, for the record, I'd just like to add that I lived a healthier lifestyle than the average American before I came down with this illness. Not bragging here but I don't think I'm the only one on this forum who ate healthy, meditated, exercised regularly, commuted less than 20 minutes a day, etc. beforehand and still went down for the count.
     
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  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    A lot of us exercised and ate healthful food. Illness just happens to people. I was very active. Then got CFS, after years got better, then POTS began.... now coming out of the POTS slowly.
     
  4. ukxmrv

    ukxmrv Senior Member

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    It may be Flutterby that if you stopped the yoga and tai chi that you would notice greater and quicker health improvements. That is if you have genuine ME or a type of CFS that does include exercise intolerance.

    If you have straight forward FM or a type of CFS that doesn't include exercise intolerance then by all means exercise away and good luck to you.

    Just an idea anyway.

    A friend of mine did a literature search a while back on exercise and ME and CFS but found no papers that would back up the idea that yoga and taichi could be benefical.


    Just out of interest do you know what criteria of ME or CFS you were diagnosed with and who diagnosed you with the diease?

    Did you have any testing to determine what the agent waa that caused your CFS or ME?

    Thanks for being willing to enter in a dialogue with patients here.
     
  5. Sparrow

    Sparrow Senior Member

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    When I was much less severe, and before I knew what was wrong with me, I used to love yoga. Felt relaxed and rejuvenated after. ...But also didn't yet have my energy back by the week after when it was time to go again. Wish I had known then what I had known now. I think it's a great activity...but not for me until I'm truly healed.

    I agree with the comment that you might improve even more quickly without it, as hard as that may be to consider. That said, we all make trade-offs sometimes and accept some negative consequences for the sake of doing the things that are most important to us. If that's yoga for you, then all the best to you with it. :)
     
  6. Carrie-Louise

    Carrie-Louise

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    Flutterby - hi
    your blog seems to have gone, have you changed the name?
     

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