The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
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Progressive Insomnia before my crashes

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by gettinbetter, Aug 21, 2017.

  1. gettinbetter

    gettinbetter Senior Member

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    I do something strenuous for me ( work or gym on a regular basis )
    Bit by bit it gets harder to go to sleep so I get to sleep later and later until my sleep schedule is backward
    Then I crash for a week or two or three

    This happens on a regular basis
    Anyone else?
     
  2. Valentijn

    Valentijn The Diabolic Logic

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    No, I avoid doing things that make me sicker. Working out at the gym especially sounds like begging for trouble with no possible benefit from it.
     
  3. NL93

    NL93 Senior Member

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    Yes, this has happened to me too a lot in the past so now I have learned to avoid it as much as possible. You cannot recover when you keep crashing.
     
  4. PatJ

    PatJ far and free I gaze

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    Worse than usual insomnia is often a sign that someone with CFS/ME is overdoing it. Take it as a warning sign that you need to rest more. A repeated push-crash cycle has caused many people on this forum to become worse, often permanently.
     
  5. gettinbetter

    gettinbetter Senior Member

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    Good points on the push crash cycle
    It is very hard to not overdo it because life is what it is and most people have to work and even if it's part time it is still overdoing it for me. One can't just do nothing
    A certain amount of exercise is necessary and beneficial for good health if that means light workouts as tolerated at the gym then that not a bad thing for me
    There must be others with this problem of progressive insomnia the point of my post is to see what they do to manage this problem.
    Finding a ways to increase strength and stamina and speed recovery from the inevitable fatigue is my endeavor.
     
  6. NL93

    NL93 Senior Member

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    No, severe fatigue is a signal that you need to rest. Exercise is good for healthy people, but when you have ME/cfs exercise is not tolerated well, as you are noticing with your symptoms. You have to listen to your body and take things slower. If that means you can't work full time then that's how it is unfortunately. Maybe when you are taking enough rest and avoid crashes you will start to feel a bit better.
     
  7. *GG*

    *GG* Senior Member

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    I would Not say to quit exercising if your body does not do severe crashes. Yes, take it slower, slowly ramp up if the repercussions are not significant for you.

    GG
     
  8. gettinbetter

    gettinbetter Senior Member

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    Yes take it slower that's true but finding ways to improve your overall health and stamina is also necessary which I think we all should do. It is hard to see a crash coming How do you guys know when you are heading for a crash?
    Have any of you employed a heart rate monitor? One health professional suggested not letting your heart rate go beyond a certain upper threshold.
    Thanks
     
  9. Valentijn

    Valentijn The Diabolic Logic

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    Except you're crashing regularly, so you're engaged in more activity than your body can tolerate.

    It's probably not possible with ME/CFS. If it were, one of the many GET studies would have produced objective results showing improvement by now. They haven't.
     
    Last edited: Aug 22, 2017
  10. gettinbetter

    gettinbetter Senior Member

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    Read this post
    "It was same-day. It's been slowly improving since. I take the B2 with it religiously, + C, Se, & iodised salt for the iodine.

    After 6 months, I have very little CFS left.

    Cognition & memory have improved nicely - partly from the B12 & partly from my cognition mix."

    http://forums.phoenixrising.me/inde...view-vs-rich-vans-view-thoughts.43539/page-18
     
    Last edited: Aug 21, 2017
  11. Mij

    Mij Senior Member

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    Many years ago when I started to feel as though I was recovering I was able to go back to work. I also started doing light exercise and the first thing that was negatively affected was my SLEEP. I should have seen this as a 'sign'. I became totally disabled in a one month period.

    So, fast-forward 25 years and I am still disabled and unable to work.
     
    arewenearlythereyet likes this.
  12. gettinbetter

    gettinbetter Senior Member

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    I agree it's a very tough illness to beat but some are getting better

    Here is a post from another forum
    They don't call if CFS there.
    http://www.cpnhelp.org/big_win
     
    Last edited: Aug 21, 2017
  13. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    The best way to improve your symptoms will be to pace properly. Some supplements might help, as will diet changes if required, but finding your energy budget will be the most effective. If you don't pace properly, the supplements are a waste of money since all the benefit you may have gained will be blown by not pacing your available energy.

    Start by halving what you think your energy budget is ( cognitive and physical). If you are still having symptoms without improvement halve it again until you see a difference. The way I look at it, I'm lucky to be able to do what I can do, and it's about preserving what I have, not wasting the energy I have or crashing so much that I end up declining faster than if I managed it better. You certainly can't exercise yourself out of this and if you do you are speeding up your path to being bed bound. Sorry if that's harsh, but in hindsight it seems the best advice that I would have appreciated up front rather than " your chances of recovery are good" try this GET programme, which is what I got. I later found out that only 5% of us recover fully and this is normally within the first year of illness.

    You can though improve quality of life by pacing management techniques and I saw real improvements (particularly pain and cognitive symptoms ) once I reduced my energy expenditure.

    Heart rate monitors and symptom tracker apps are great for pace management and there are loads of threads on this. I find my memory is so poor that my recall as to how I'm doing can be seriously wrong so these help me look at symptoms and energy usage more objectively.
     
    Jessie 107 and Valentijn like this.
  14. gettinbetter

    gettinbetter Senior Member

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    Don't agree fully here a good nutrition program can help even when you crash in my opinion
    Do agree energy management is necessary

    There is something wrong with this picture I would need to know more about this

    Agreed

    What program is that?

    What threads? i would like to know more on symptom tracking and heart rate managers
     
  15. Valentijn

    Valentijn The Diabolic Logic

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    You don't "beat" a disease with exercise. No one knows why a few people get better, but it certainly is not due to GET. Based on very large patient surveys, we know that GET usually makes ME patients sicker. Some end up bed-bound for years or decades.

    GET = Graded Exercise Therapy. It's been studied to death over the past 20 years, and it never results in patients becoming more active or less disabled.

    We can't cure ourselves. We pace our activities to avoid becoming sicker, and manage our symptoms as best we can. Based on maximal CardioPulmonary Exercise Tests (CPET) our aerobic metabolism seems to be pretty broken.

    Keeping heart rate under 60% of maximal (usually around 110) can help in avoiding crashes - but we absolutely have to pay attention to symptoms and prior experience to also avoid crashing. If you're pushing yourself, it's already too late.
     
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  16. gettinbetter

    gettinbetter Senior Member

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    I did not say that exercise is a cure for CFS
    I disagree ..the people that get better know how they recovered

    Disagree again I think we can get better people have done it in some cases or at least they have improved from CFS (which is a symptom of something else I think) I showed two post as evidence of people who discovered something that worked for them


    I am not going to argue with you on the above points and I did not come here to dispute anyway you guys do provide useful information and I appreciate that

    That is helpful
    Thanks
     
    Last edited: Aug 22, 2017
  17. Valentijn

    Valentijn The Diabolic Logic

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    No, some people randomly go into remission. They might be taking something or doing something when it happens, but that's just coincidence. None of them attribute their remission to the same thing.

    If one person's "cure" was spinning clockwise 42 times while beeping, another's is hopping backwards while farting, and yet another's miracle comes from singing the Star-Spangled Banner, odds are their improvement had nothing to do with their actions. And that's pretty much the case with claims regarding diet, activities, and other interventions. For one it's blueberries, for another it's sauerkraut, or a vitamin, or raw potatoes, or paddle-boarding, or pole-dancing, or standing on a circle and shouting "no!" at symptoms.

    The recovery stories are implausible enough on their own. En masse, they look completely insane.
     
    Last edited: Aug 22, 2017
    arewenearlythereyet likes this.
  18. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    Nutritional supplements and diet can help you when you have clear deficiencies (e.g. B12 folate etc), however if you routinely use more energy than you have they won't make a noticeable difference. The point is, pacing will give you far much more useful energy in terms of scale of improvement by breaking the boom and bust cycle. Supplements will top that up somewhat but you can't expect the supplements to allow you to carry on exercising beyond your limits. It's more about symptom relief and management than cure.

    You are unlikely to find a self hacked cure using alternative therapies but you may be able to improve your quality of life ( by reducing the impact of crashes, improving cognitive stamina, gut problems etc) and perhaps slow the decline.

    Regarding heart rate monitors, I use a Fitbit blaze (there are loads of others...I recommend searching threads on PR) I keep my heart rate below cardio and in the lightest zone (Fitbit call in the fat burn zone) if my heart rate goes above 100 I slow down, if it goes above 120 I stop and rest.

    Symptom trackers are useful also. I use moodtrackerT2 but others are available. You can program scales to whatever you want ( histamine skin rash, joint pain, headache severity, heavy legs etc etc) and group symptoms (up to 10). This is quite good to identify symptoms as warning signs for impending doom. As soon as my IBS flares up and my headache and joint pain increases, I know that I need to reduce my expectations as to what I can do since a crash will result if I don't slow down. Sometimes the crash will happen regardless, but it's good to have a bit of prior warning.

    When you pace properly you still get things outside your control affecting you such as pollen count, temperature, unforeseen drains on your physical and cognitive energy, but it's miles better than the boom or bust.

    Everyone goes through the stage of thinking they can beat this by intervention. There is no cure at the moment. The best strategy is to maintain what you have.

    Of the cases that spontaneously remit there is no understanding as to why some do and others do not. I think I saw that remission is more likely if you are younger and have had an infection type onset but I can't recall exactly.
    Remission may just happen regardless of any management technique or treatment.
     
    Valentijn likes this.
  19. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    Looks like we crossed in the post....I think it's worth trying eating sauerkraut whilst pole dancing and shouting no randomly to test for synergistic effects....although you might attract the wrong sort of attention.
     
    Valentijn likes this.
  20. gettinbetter

    gettinbetter Senior Member

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    Disagree Read the posts I gave
     

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