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Can we talk diet?

Discussion in 'General ME/CFS Discussion' started by Give Me Strength, Sep 10, 2014.

  1. Give Me Strength

    Give Me Strength

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    Hi,
    I am new to this forum but have been lurking for sometime. So Hi.

    Apart from all the vitamins we all seem to take, some people have mentioned diet, now for someone with a so called illness my diet is appalling.

    Can you really get that much more energy from a decent diet and is there a regime that is really easy to follow as since having this "condition" my will power is lower than ever (he says with a bag of Minstrels).

    Any thoughts would be appreciated.
     
  2. A.B.

    A.B. Senior Member

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    Hi,

    It depends on your condition. If your endocrine axis is compromised and tends towards underfunctioning (which is common in CFS), you'll probably find it helpful to eat small meals every 2-3 hours, as well as avoiding sweets.

    Carbohydrate avoidance is hard on the body as well, so avoid that.

    This did noticeably reduce fatigue for me.
     
  3. xchocoholic

    xchocoholic Senior Member

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    Um, fwiw, they're aren't any vitamins we all take. This forum, like all forums, reflect the opinions of those who post. And then that person may change their minds later. Been there. Done that.

    Imho, check the usda nutrient guidelines for a list of important nutrients. Nutritional testing can help too. Imho getting nutrients from food is best.

    I'm pro elimination diet to eliminate food intolerances and toxins.
    The paleo or Wahls diet appears to be the best option here. Dr Myhill recommends the paleo diet.

    Having said that I found the paleo diet used up too much of my energy between staying on top of keeping fresh fruits and veggies in the house and preparing them. I'm looking for an easier way to eat paleo now.

    Tc .. x
     
  4. Sasha

    Sasha Fine, thank you

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    Let me know if you find one... :aghhh:
     
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  5. xchocoholic

    xchocoholic Senior Member

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    If I were willing to eat all raw meats, fruits and veggies like cavemen did this would be easier. But ... lol.

    Juicing organic clean veggies and fruits helps. I'm not wasting time washing these now. This is where I get most of my fruits and veggies. I always eat a few bites while I'm juicing.

    It's tough finding clean fresh organic produce sometimes.

    I'll probably go back to baking multiple servings of meat in the oven. That was easy.

    Baking squash is easy. Boiling eggs is easy.

    Got any other ideas ? Tc .. x

    Ps. Sorry to go off on a tangent here. Maybe we should move this ?
     
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  6. Sasha

    Sasha Fine, thank you

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    Yes, we should @xchocoholic - I've started one here:

    http://forums.phoenixrising.me/index.php?threads/how-to-make-the-paleo-diet-easier.32486/

    Would you like to repost your post over there and we'll pick things up there.

    Sorry, @Give Me Strength! You've only been here five minutes and we've hijacked your thread.

    Welcome to the forums!

    You might find the paleo diet interesting, though - there are several threads here on it and some good books on Amazon, such as Chris Kresser's "Your Personal Paleo Diet" (or "Code" if you're in the US).
     
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  7. Give Me Strength

    Give Me Strength

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    Endocrine axis - that's a new one on me, I thought I was aware of quite a lot regarding the whole CFS thing, but like everything there is still so much to know.
    I have a tendency to skip dinner.
    Like tonight I am working late, by the time I get home it will be too late to eat. On the way home I will pas a McDonalds and a sainsburys - any thoughts for dinner I can have on the go?
     
  8. ukxmrv

    ukxmrv Senior Member

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    For me the area of Diet has been the one I have put the most energy into and with the worst results and return on my time.

    You can still work so you must be doing something OK. Personally if I was in your position I'd not worry too much about diet. I mean things like radical or hard to prepare regimes. The other thing I would personally do, is ignore general advice on what is a healthy diet for a PWCFS or ME or even a healthy "normal" person. Work out for yourself what suits you - preparation time, number of meals, when to eat and what.

    The diet I have finally ended up with through trial and error, and consisting of the things that give me the most physical functioning isn't in a book or dietitians training. It's not the fruit/vege/salads/wholegrains/low fat/low salt "so called healthy diet" I had when I became sick with ME.

    The closest thing to it would the Aitkins with extra carbs in the morning only. Larger, less frequent meals.

    Experiment away and see what works for you. Are there any foods you could be allergic to, any foods that give you a little more strength without a crash after? Keep a diary and see what helps/doesn't.
     
    Last edited: Sep 10, 2014
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  9. ahmo

    ahmo Senior Member

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    Many of us find great improvements from eliminating gluten. And dairy, at least in the form of pastueurized milk. The Gut and Psychology Syndrome (GAPS) diet which has been a central part of my healing promotes high intake of animal fats for healing gut and brain. Yes, keep a food diary, get acquainted with how your body responds to foods, and to eliminating foods.

    What are the symptoms of your 'so-called illness' ?
     
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  10. alex3619

    alex3619 Senior Member

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    There are sometimes healthier choices at fast food places. However in the absence of healthier choices, you can skip fries, find a burger with lots of vegetables, and then buy two. However at least here McD has options like chicken salad and so on. Buying two burgers increases your vegetable intake and protein, and you avoid some of the excessive carbs and fats in fries. Of course if you could get a burger and a small salad or piece of fruit that would be even better. Personally I find on the very rare occasions I eat at McD that a chicken salad and a small fruit yoghurt works.

    What people find is the best diet is highly variable. Its about searching for what works for you, though taking into account the many recommended options is a good place to start.

    Finding easy options is the hardest. Right now I barely have the energy to stand, and I wanted to make dinner. It probably wont happen now, instead I will have a piece of fruit or something, and worry about a real meal when I have had a few hours sleep.

    One thing that helps me enormously is learning faster recipes. If something takes little time to cook and very little energy its more likely i will be able to cook it.
     
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  11. Give Me Strength

    Give Me Strength

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    Ok, I want to say a bit more about me, and this is where all other forums have shunned me, so here it goes.

    Before I was diagnosed with this I was running 20+ miles a week and working lots.
    Then I was off work, had to go back to save my job.
    Now I am able to run 5/6 miles on a good day, but when I crash, I crash bad.

    The bottom line is, generally I am at a higher level than some with this condition but it is still there. And I really appreciate the support I get from here.

    Hope to get some response soon and I hope people don't feel I am as fraudulent as I sometimes do.
     
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  12. ahmo

    ahmo Senior Member

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    Your initial post asked,
    Seems to me like 2 ways of approaching this: 1) What foods will give me energy, so I can continue on w/o crashing.

    Or, 2), what am I eating that might be contributing to my crashes. This sounds simplistic, I know. Still pretty vague about your 'so-called illness' 'condition'. Is it CFS? Anyway, I've gone from accepting that the body is running on carbs for energy to shifting into using fat as energy.
     
  13. Give Me Strength

    Give Me Strength

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    Everyone who I have spoken to either in a personal or professional capacity concurs that it is CFS, although I don't know if over time it changes/mutates to a different condition.
    As I read in another post, CFS covers a massive range of symptoms, I am very lucky and have put myself through hell to get where I am today. However I do get bad glimpses of how things used to be. I really feel for those who have it a lot worse than I do.

    I've heard that gluten is a good thing to get rid of, bit I find it impossible to do.

    Other than that I can only put it down to over exertion for a few days can bring me down, yet proper excercise actually helps as has done since I was able to get out of bed for a few hours from when I was diagnosed, if that makes sense.
     
  14. Sasha

    Sasha Fine, thank you

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    I would just say be very, very careful. I went from years bedbound to several years of what I thought was recovery (with occasional crashes which I didn't recognise) and it turned out to be only a remission. During that time, I sometimes went to the gym for a month or so at a stretch and was able to train. Later, I had a relapse and for the last few years have been mainly housebound/bedbound.

    If you're still crashing, you're still sick. I'm worried that you're overdoing it (enormously).
     
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  15. A.B.

    A.B. Senior Member

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    There are people who call themselves CFS specialists but have no idea what they're doing. They promote an "exercise and positive thinking will cure you" approach. They apply the term CFS to almost anyone.

    There are also different definitions of CFS, ranging from vague mild fatigue to severe neurological illness.

    Does the following definition (table 1, page 3) apply to you?
    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf
     
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  16. Give Me Strength

    Give Me Strength

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    WOW, thanks for that, I really mean it.

    I have never met/spoken to anyone on a similar level as me, that is really interesting, I have a thing to do on the 5th October then I might scale things back and just try and keep a good base level of fitness, and try and stop the crashing.

    Any other info like the above would be really helpful
     
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  17. taniaaust1

    taniaaust1

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    Diet can often help those who have ME/CFS as most with this get food issues of some kind or another with this at some point eg problems to gluten, issues with carbs, fructose intollerance, food intollerences or some have issues to dairy etc are all quite common in ME/CFS.

    The thing is, this is just like supplements its not the case of one diet fits all. The persons diet needs to be based around on what food issues that person has. A very health diet for most may be a terrible diet for another who has ME/CFS according to the food issues one has.

    The standard just eatting healthy, generally doesnt do much for ME/CFS people.
     
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  18. taniaaust1

    taniaaust1

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    If you do have ME and are crashing, you are at big risk if you continue on. Take care (I used to be quite sporty too, I did a 100km marathon when I was in remission).
     
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  19. Give Me Strength

    Give Me Strength

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    That is a really informative article and, disappointingly, I do fall in to the category of ME, I was 'happy' going through life and only referring to CFS when I had to, like a dirty name, for any Harry Potter fans it would be akin to saying Voldermort.

    Time to face facts, but I'm not going to give up believing I can beat this.
     
  20. Sasha

    Sasha Fine, thank you

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    Glad that was helpful - I'm worried still that you're talking about maintaining a good base level of fitness, though. People with ME have problems when they go over their aerobic thresholds, which can be quite low because of the disease. If you're thinking of doing aerobic exercise, I think that you're still thinking in a way that could lead you to keep crashing (and one day, possibly give you a serious relapse).

    If I were you, I'd stop exercising for now (I'm not kidding!) and start studying this. You'll find plenty of info on the forums - if you're struggling to find it, you could post a question like "Please help me understand how not to crash now that I'm in partial remission' or something like that, and in the post, ask people about how you should be pacing, and balancing activity and rest and so on so that you don't set yourself back.

    I'm really serious about this. I wish I had known that it was possible to make myself ill again. I didn't have good advice available to me at the time.

    You can get fit any time, once you're truly, truly over this. You can't easily get well again if you have a serious and longlasting crash.
     
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