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Share Your Experience: Types of Exercise That Work With ME / CFS?

Discussion in 'General Treatment' started by pone, May 29, 2014.

  1. taniaaust1

    taniaaust1

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    Did u get your 23andME stuff done before they restricted everything? If you got tested before the restrictions, your result for this should be that long list of strange things which you tell you if you have certain genes for things or or not eg things like do you have ear wiggle gene, or the tongue roll gene and stuff like that. (I assume we still have access to that and they havent gone and removed stuff they previously gave us).

    Im trying to load 23andME on my crappy computer but cant currently get the site up to check out what that gene is called. I'll try it again another time another day if noone else posts here what it is as Im sure they are people here interested in this who want to see if they have it or not, who may of gone throu 23andME after they cut back on their reports.
     
  2. ahmo

    ahmo Senior Member

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    @taniaaust1
    My daily activities are of the most minimalist kind. I go out to do my shopping once a week. The main activity in my life over the past 5 months has been coffee enemas, 4 days on and 2 days off. Now that I've completed some major detox, I've got about 4 hours of unaccounted-for time. It remains to be seen what will fill this vacuum. cheers, ahmo
     
  3. SOC

    SOC Senior Member

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    I looked in the Traits section, but I don't see anything about athletic performance. I had my test done just before they started restricting information. At that point they had stopped testing for some genes. Maybe that is one of them. :(

    Oh, wait! Is it Muscle Performance? Mine says "Likely Sprinter". I'm CC for the ACTN3 gene (as far as I can tell). So, yeah, that fits -- I'm a sprinter.
     
    Last edited: May 30, 2014
  4. taniaaust1

    taniaaust1

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    Your comment got me thinking about length of time my arms left if Im holding up something weighty continuously as in trying to move a lightish cupboard with the help of another. I can carry something like that from one room to the next but probably no further at a time then that without having to put the object down and rest for a minute (due to severe pain coming in then in my muscles and I just cant hold it more or I'd drop it). On the second pick up of an object, my stamina, the time I can hold it for is shortened.

    This thought has helped me compare it to my previous run times.. and I think my arms must have the same kind of length of time for stamina or whatever calls it, as my legs do when running fast. So many seconds 30-40 seconds?. my case there is no way I could hold something heavy for that long as 2 mins. My arms go into pain quite quick and I'd drop something (my body starts shaking too) long before I reached the 1min point.

    So what puts the individual caps onto each of us for the amount of time we can do something like run or be carrying heavy object.. I wish they'd study that thing. If they could measure that and how it functions.. maybe they could accurately predict just how little we can exercise.
     
    Last edited: May 30, 2014
  5. taniaaust1

    taniaaust1

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    :) yeah that's it.. its a bonus not just for sprinting but in strength building too.. stamina if Im remembering correctly. They also "had" (they probably have been made to take it down) an article at 23andME about it and athletes. (unless there was more then one gene). Im good WELL WAS I should say, at endurance sports.
     
  6. taniaaust1

    taniaaust1

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    I hope you build up slow and dont just suddenly put 4 hrs of activity more strenuous to what you were doing, into your day.
     
  7. Valentijn

    Valentijn Activity Level: 3

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    None, I think. But it also sounds like there should be little or no increase in heart rate over resting rate if walking quite slowly on flat terrain.

    Though I'm not sure how that's relevant, since we almost never have the heart rate or response of a normal person?
     
  8. ahmo

    ahmo Senior Member

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    @taniaaust1
    Strenuous is not part of my vocabulary. The most taxxing thing I might undertake now that my arms don't hurt, is to learn to play the ukulele I bought last year.:)
     
    WillowJ likes this.
  9. Valentijn

    Valentijn Activity Level: 3

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    Interesting stuff! I'm TT for rs1815739, so I completely lack actinin alpha-3 (ACTN3) as does about 15% of the population. It sounds like the theory is that ACTN3 protects fast-twitch muscle fibers, so people without it generally suck at sprinting. But the lack of it also means that muscles do a "better" job of being damaged by exercise, and can therefore bulk up more.

    Based on the data I have for 12 ME patients, we have about the same amount of CC, CT, and TT as the "controls". Though it is perhaps noteworthy that the muscles of TT people use more oxygen.
     
    SOC and taniaaust1 like this.
  10. Artstu

    Artstu Senior Member

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    I didn't do exercise like that when I was at my worst. I was about 4 years into illness before I tried.

    The cold temperatures of winter, are the key factor for me, I produce far more power in the cold, and recovery is much quicker. Every winter is the same, sub zero temperatures are best, we didn't get many this winter though.

    I get all those effects, it just seems that they're to a lesser degree than most on here. When I recovered I just did it again and again, but as I say the cold temperature is the key for me. Summer is more low key, but probably 70% of max on the e-bike, I need to check to be sure. I have a lot of variability day to day week to week. I decline through summer, then rebuild ground in winter on a repeating yearly cycle.
     
  11. justy

    justy Senior Member

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    I do get Muscle weakness, but not muscle pain that you describe.
    Yes you are correct I do not have CFS - I have M.E ;).

    I recently saw KDM and he said that most of my symptoms were probably being caused by inflammation - he also noted It looks like I have quite a lot of brain inflammation - to the point it is causing small seizures, which he hopes will be reversible with treatment.
     
    SOC likes this.
  12. xchocoholic

    xchocoholic Senior Member

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    Yeh, I've been healthy at rest since 2008 but never reached the level of activity I am now by chewing caffeine pills and dextrose tablets and drinking xxx vitamin water. Kow.

    I only pushed from Feb to April 2014 so far. A uti/stone nailed me only I thought it was a cfs crash for a month. Duh !

    I'm a celiac so I'm supposed to heal but that doesn't take into account all the other dx celiacs can have. Elisabeth Hassellbeck probably explains this in her book. Dr Myhill has info on caffeine.

    Caffeine in drinks never worked as well. It could be all the other chemicals in those interfered. I think coffee has 1000's of chemicals.

    I tried the caffeine pills because caffeine stops drowsiness and I know I respond best to taking any med via chewing it. Or letting it work in my mouth.
    I use children's liquid Benadryl, etc for this reason.

    It's exciting to find a way to avoid my normal pem. And I'm actually getting a lot done. I finished my planters yesterday.

    Tc .. x
     
    Last edited: May 31, 2014
  13. manna

    manna Senior Member

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    i found tai chi helpfull. should be said that was in a group situation and not alone. alone i might do some polarity yoga. best to keep limber and supple though experience has shown me not to walk, exert or do aerobic in any way.
     
  14. Mij

    Mij Senior Member

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    That's really interesting. I would have liked to have those tests done. I was a long distance runner.
     
  15. pone

    pone Senior Member

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    What are you values for hscrp and homocysteine?

    Did they try to measure brain inflammation any specific way? I think Cyrex has a brain autoimmune test.
     
  16. justy

    justy Senior Member

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    No idea on the first question - I don't think thy have ever been tested. No brain inflammation has not been tested - he was going on symptoms - I am still waiting for test results from him.
     
  17. snowathlete

    snowathlete

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    This is something i am thinking of trying. Not sure what my resting heart beat is at the moment, but probably not much room before I hit 110. I have to do something I think as I have recently, the last week or two, started getting lots of pain in my legs upon standing. Right at the tops of my thighs, in both legs. It may be that this is hereditary spastic paraplegia (which I might have, not sure yet, waiting for a neurology appointment) as that may cause these sorts of symptoms, but it may also just be that through lack of movement and exercise for years they are begining to really seize up. I'm going to start with stretching I think, that alone might increase my heartrate quite a bit I think.
     
    Valentijn likes this.
  18. Valentijn

    Valentijn Activity Level: 3

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    Doing your stretches while laying down would probably help a lot in keeping heart rate low. Magnesium and/or potassium can also help if you're getting cramping or twitching.
     
    snowathlete likes this.
  19. pone

    pone Senior Member

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    I think it is really important to not self diagnose things like inflammation, without checking the clinical markers of those things. A lot of naturopaths can take you down the road to hell trying to sell you on the idea that you have inflammation, and then you test and the traditional markers for those things can sometimes tell you that you don't have that at all. Or there can be weird variations on the theme. In my case, my hscrp is near zero (suggesting no inflammation), but my homocysteine is elevated. That might be a genetic methylation defect, so I need to get genetic testing.

    In any case, you want to spend time fighting the problems you actually have, and not guessing about those. Inflammation is one of those really key issues you need to get right. The things that can be checked:

    * Leaky gut, which Cyrex has a good test for by looking for LPS byproducts from bacteria in the blood

    * hscrp, homocysteine, and sedimentation rate, which are all traditional clinical markers. If your doctor never ordered those, I have to ask what kind of doctor is that?

    * autoimmune tests, such as Cyrex tests for food sensitivity, chemical sensitivity, and blood brain barrier autoimmune markers

    Maybe others can suggest other tests for inflammation.
     
  20. justy

    justy Senior Member

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    Thanks for the suggestions.

    I didn't self diagnose - I was told this from a discussion with my specialist M.E doctor - he sees a lot of patients and we discussed my neurological problems which he felt were definitely seizures of some kind - in his long experience these are usually caused by inflammation in the brain.

    He has done extensive testing to find the causes underlying my illness - I am not guessing at anything, or self treating.

    Just noticed you last question/statement - the kind of Doctor he is is an internationally renowned M.E doctor who helped to write the ICC which I fit exactly. Perhaps we can move on now from casting aspersions on my diagnosis and doctor.
     
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