The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Fluctuations

Discussion in 'General Symptoms' started by MartinDH, Nov 10, 2017.

  1. MartinDH

    MartinDH

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    I experience enormous fluctuations of my symptoms. One day can be "good" and the next a total mess. And that has not to be correlated with exercise. Furthermore there are enormous ups and downs on one single day.

    Is that normal in ME?
     
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  2. Tammy

    Tammy Senior Member

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    The enormous fluctuations VERY NORMAL.............even within a single day.
     
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  3. ljimbo423

    ljimbo423 Senior Member

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    I agree with @Tammy. It would be more abnormal if you didn't.;)

    Jim
     
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  4. ukxmrv

    ukxmrv Senior Member

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    Can you describe your fluctuations during one day please (i.e time, activity level and if that causes PEM)

    My daily rhythm in general is to start off badly and then have symptoms improve as the day goes on.
     
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  5. MartinDH

    MartinDH

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    Puh, quite difficult to answer. Because there often is no structure or system in these fluctuations (or I haven't noticed it yet). Main symptoms are: Dizziness, weakness, sometimes fatigue (but not too strong), digestive problems, feeling ill (like having a flu).

    But this week was really (!) good compared to last week were I had a massive crash after a cold and was bed bound for about four days. That means: I wake up, feeling dizzy. After breakfast my energy level gets better. So from Monday to Thursday I worked until nearly noon (home office)... then my energy level falls down so I know I need some food (fats!). I have lunch. After that I can work until four o'clock. Then my energy levels fall down slowly. Then in the evening I had some crashs this week. They lastet two or three hours.

    The thing is: I don't really know why. On other days the structure of ups and downs is completely different. So it can be horrible in the morning, better in the evening or the opposite. But what I think I already know is: It's worse when there are digestive problems!
     
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  6. ukxmrv

    ukxmrv Senior Member

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    Maybe keep a diary and see what comes up? From your description above it sounds as your fluctuations are based around food and needing to eat for energy.

    I don;t know if this helps at all but I notice that if I keep my mornings very quiet and don't do any physical exertion in the afternoon my evenings can leave me feelings almost human. It's the only circumstances that create this "good " time.
     
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  7. MartinDH

    MartinDH

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    Hm I don't know. The thing is (without physical exercise) my crashes are non-reproduciable. But yes, it definitely has to do with digestion. But I can't figure out what to eat or what to do to improve digestion.
     
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  8. ljimbo423

    ljimbo423 Senior Member

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    A very simple place to start would be a very strong digestive enzyme with every meal if you are not already taking one.

    Capsules work best because you don't need to break them down like pills. Gut dysbiosis is extremely common in CFS and impairs digestion.

    Jim
     
  9. MartinDH

    MartinDH

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    Do you have any recommendations?
     
  10. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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  11. ljimbo423

    ljimbo423 Senior Member

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    The one @CFS_for_19_years mentioned looks like a good one. Here is a less expensive one that isn't as strong but still very good.

    It's probably best to take one with every meal. Especially if what Chris Armstrong says about us not digesting fats and proteins in the small intestine where we should is right.

    He says the undigested fats and proteins make it into the large intestine where they cause problems. Digestive enzymes will help prevent that from happening.

    Jim
     
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  12. MartinDH

    MartinDH

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  13. ljimbo423

    ljimbo423 Senior Member

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    That looks like a pretty good digestive enzyme. It seems like noticeable improvement varies from person to person. It could be something that takes weeks to make a significant difference.

    It can be and often is, difficult to treat digestive issues. Dysbiosis is EXTREMELY common in CFS. Dysbiosis is something I am working on and have been fairly aggressively for about 7 months.

    I have made really good improvements, however, I have had digestive issues for many, many years. So the dysbiosis I have is well established and more difficult to treat than say somebody that has had digestive issues for several months.

    The improvements have been greatly reduced flu-like symptoms, improved mental clarity, increased energy and even more-so in just feeling much,much happier!:) I am sure these are a result of cleaning up my digestive tract.

    Jim
     
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  14. MartinDH

    MartinDH

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    @ljimbo423 yep and from my point of view the whole gut issue is at least one of maybe three main problems going on in my body. So digestion is in fact the first part to focus on.

    May I come back to you per PM to ask about your treatment?
     
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  15. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    When I started taking the Life Extension Enhanced Super Digestive Enzymes it only took a few days to go from bloated and uncomfortable to feeling much better. If I happen to run out of them I suffer.
     
  16. MartinDH

    MartinDH

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    Thank you! Maybe I have the wrong supplement. I didn't buy the product you have recommended because I have to pay 40 Euros for 60 capsules :-/

    My other idea is a link to cortisol, mentioned here http://forums.phoenixrising.me/index.php?threads/symptoms-and-cortisol-a-causal-relationship.56174/
     
  17. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Take a look at the price here:
    https://www.lifeextensioneurope.com/enzymes/enhanced-super-digestive-enzymes-60-vegetarian-capsules
    You can RECEIVE €10 OFF YOUR FIRST ORDER by subscribing to their newsletter. Go to the bottom of this page to enter your name and email:
    https://www.lifeextensioneurope.com/order-service/

    Or try this:
    https://de.iherb.com/pr/life-extension-enhanced-super-digestive-enzymes-60-veggie-caps/67043

    Or this:
    https://www.ebay.de/sch/i.html?_odk...ion Enhanced Super Digestive Enzymes&_sacat=0
     
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  18. MartinDH

    MartinDH

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