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My biggest fear is deconditioning

Discussion in 'General ME/CFS Discussion' started by Johnskip, Mar 22, 2017.

  1. Johnskip

    Johnskip Senior Member

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    I have ben an avid exerciser sports player especially basketball and body builder I do not want to lose my body. deconditioning sorry
     
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  2. Valentijn

    Valentijn WE ARE KINA

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    I fear death or severe disability much more than deconditioning. The effects of deconditioning pale in comparison to what we can do to ourselves with even mild overexertion. And the effects of deconditioning are easily reversible - declines caused by ME relapses are not.
     
  3. Johnskip

    Johnskip Senior Member

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    well said
     
  4. ukxmrv

    ukxmrv Senior Member

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    Dr Ramsay said that his ME patients recovered normal muscle function if they were lucky enough to go into remission.

    Deconditioning would only be a temporary condition if lucky enough to survive the disease and have a remission.
     
  5. alex3619

    alex3619 Senior Member

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    There are different types of what I consider deconditioning, though generally this refers to muscular deconditioning. The muscles can be reconditioned, even 70 year olds can become ripped if they want to.

    In terms of positive exercise benefits the one that worries me is bone deconditioning. Bones become weaker if not stressed, and this is a difficult process to reverse. However it does not take a lot of bone stresses to maintain bone density. Nothing like what we need to do to maintain muscle function.

    The other "deconditioning" is not exercise related, and is about maintaining cognitive faculties. Again this will require a long time to correct after recovery.

    We expect to have some treatments or cures very soon. As in its time to start counting in months, not years. Most ME symptoms appear to be fully reversible. It will be hard to recover, just as it is for major injuries or stroke, but recovery is something we can work on.

    If you are a body builder then you already have the dedication and focus to be in a good place for rapid and complete recovery. Its just very important to not do too much too soon ... that could set you back years in recovery time.

    The big one here is that the aerobic energy system appears to be so broken it cannot be conditioned and gets worse if you put too much strain on it. See the Workwell research, and the research from Light and Light.
     
  6. Countrygirl

    Countrygirl I'm with Cheesus

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    Oh dear!

    Deconditioning?

    If only that was only what we had to worry about.

    I don't mean to be unsympathetic....................I am the world's dunce at physical fitness....................but keeping myself alive over the past few decades is my priority. Many, many others have failed. I am now, frankly, failing too.

    Deconditioning is nothing to worry about. It is reversible. ME, for most of us, is not.

    I hope you recover sufficiently to return to full fitness. In the meantime, don't worry about it. It is recoverable if health permits.
     
  7. alex3619

    alex3619 Senior Member

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    The other often overlooked issue is that a lot of chronic fatigue is not ME. Post viral fatigue can last months to a few years for example. So the problem might be self limiting, or due to some other factor like a nutritional deficiency or heavy metal poisoning.

    Duration of illness is critical. Under five years many ME patients recover, though most of those do that in the first year. After five years the recovery rate is abysmal, and we are almost fully reliant on an eventual cures.
     
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  8. alex3619

    alex3619 Senior Member

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    I sympathize. The general medical consensus from ME experts is we die maybe twenty or more years younger than we should. For the big killers, heart disease, cancer and suicide, we die about ten to fifteen years younger than the rest of the population.

    We have to survive long enough to be able to be cured and begin working toward full recovery.

    I do want to add though that for many of us it appears we have a molecular switch governing much of this. Spontaneous short term remission, as in hours or days, shows we can go from disabled to recovered and back to disabled. This is part of the evidence that full recovery is possible, and shows that if we can figure out a good cure it might need only hours to work. It will be like flipping a switch at the molecular level.
     
  9. Sandman00747

    Sandman00747 Senior Member

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    That's exactly what happened to me @alex3619 . For no reason that I can figure out, that switch flipped in me about a year ago and lasted 3 1/2 days. I felt totally restored in every way and had all my strength back then, alas, the switch flipped back to ME. It still made me very optimistic that we can be fixed at least to a level where we can function and enjoy life again. Had this not happened to me I would not be so hopeful.
     
  10. BurnA

    BurnA Senior Member

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    There are two possible elements to this.

    The first is just fear of losing your body as you know it. Sorry, while it might be shocking to you initially you will realise that this is not that big a deal as time goes by.

    The other element is that deconditioning might lead to worse overall health which is understandable to fearful of. Alas I am not sure how to prevent it.
     
  11. lnester7

    lnester7 Seven

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    I was fearing the same, since I have POTs also I need to avoid it.
    I always "exercise" w CFS, so I do not decondition. I do soft walks, but I do better on lay down exercises than standing (due to OI is better not to fight gravity). I measured my AT in a lab which is 115bpm. So I can exercise under AT. I started w 5min on 5min off (lay down), (this was measured so I know it was safe for me). But if you don't have access you can start as low as 1min or even less.

    My "exercise" Has changed based on my disability and I adjust based on what I can do. Now I can do squats (do 10 then go about my day then do 10 more..... I don't sit down and exercise because I just can't but I always fit a routine through out the day. I do like 15 seconds plank on elbows (I work my way up and down based on evergy), for sure I walk at least 10min a day up to 1h (based on energy) I walk for pain management and also is the only way I can progress. Bike I was doing to straighten the legs but I didn't notice progress so I am off of that for now.

    I also have some bands and do some leg lifts (no more than 10 a day) and arms pull *(this was given as therapy for shoulder pain) so not exercise per say but it maintains my arms firm.

    I recommend to be careful since I have relapsed myself 3 times w exercise, but I also notice in my case, I don't progress unless I workout. So Is a love hate relationship for me.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    Agree with @Valentijn and I fear dying of anaphylaxis or ending up on a ventilator and life support. Deconditioning never even crosses my mind! I am deconditioned from 2+ years in wheelchair but it's not even on my top ten list of things to worry about LOL.
     
  13. Shoshana

    Shoshana Northern USA

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    I am glad to read and learn from the varying perspectives on this topic.

    Thank you, @Johnskip
    It helped us all, that you started this thread.

    I did worry about deconditioning which I thought would lead to overall downward trends,
    so I maintained small movements, rather than none, as long as I could.

    A small amount of exercise, if done very carefully not to overdo, not to overstrain
    (it does not help anything to set ourselves back!)

    but if/when able to, doing a small amount, of very modified movements,
    I think did help me, for a while.

    When it does more harm than good,
    and when it becomes a choice of whether to get something to eat, or do exercises,
    eating and basic self-care is more important.

    Once I could not exercise, I had to work on accepting myself, for having other values than the ones I had.


    The posts were all interesting.
    One noted that it is also important to try to maintain mental abilitiy, (that also does not mean to overdo till exhausted and mentally overdone damages)
    and the bone strength mentioned above, is important,
    but we can only do what is possible.
    and best to try not to stress about what we cannot do.

    Maybe you will be able to at another time, Johnskop.
    If not, maybe you will learn to replace exercise with something else.
    It is not a quick adjustment, to limitations.

    I hope yours, and many of you, will be temporary.
    If not, our lives still have other values.
     
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  14. keenly

    keenly

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    I have POTS too.
    It is really imperative to not push out heart rates up too much. Unfortunately I have learnt this the hard way. Now I am trying to get back to where I was 2 months ago.
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    @Johnskip I can't quote your question to me b/c it is inside of a quote box. But you asked about ANA (anaphylaxis) and it really only pertains to the sub-group of people with MCAS/allergic reactions and absolutely not to everyone. I am actually significantly better in this area and not afraid of it at the moment at all. But am sometimes afraid of something happening that could put me back to that level. But praying this never occurs!
     
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  16. Dechi

    Dechi Senior Member

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    Weight lifting is actually good if you can do it without crashing. Dr Cheney has a few articles about it if you want to check it out.

    I used to weight lift 4-5 times a week, maybe 6-7 hours and I have found a way to lift, twice a week for a total of 45 minites each time during which I actually exercise 4 minutes, the other 42 minutes are resting. Do 15 seconds, wait until your heart rate goes back to normal and do another 15 seconds. Do a maximum of 2-3 sets per body group, 3 groups at the most. I only do it if and when I am well enough. Haven't been doing it for a while. Right nos I just do 1 set for 15 seconds and then do 2 more later in the day.

    I understand where you stand. It is very hard when you're used to working out a lot, to stop. First of all, working out secretes endorphines which can make you depressed when you stop. It took me a whole year just to start accepting a little bit that I couldn't workout anymore. And then when it's your passion, you want to go out and do it, it's part of your life and gives you great pleasure.

    It's probably your first loss, or one of the firsts, and it's a big one. Just try not to make yourself crash by exercising too much. Keep in mind that your body can't do it anymore, even if your mind is up to it. You will eventually accept it, but it takes time.

    I wish you the best.
     
  17. Lissyleigh

    Lissyleigh

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    My leg muscles are non existent. Literally years being mainly housebound have put paid to them. My legs are flabby and horrible but to be honeest after being so severely ill I've got to the point of accepting them along with everything else. Resting and pacing has for me led to a small amout of improvement on a base level. It may be different for others, but for me just being able to walk a few steps is a wondeful thing. I just hope things improve to the extent I can build up my muscles safely without the terrible pem to worry about.
     
  18. Sushi

    Sushi Senior Member Albuquerque

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    Here's is a kicker about losing conditioning: you can also get balance problems as the legs, ankles and feet lose muscle tone. I've noticed this and don't like it a bit!
     
  19. Learner1

    Learner1 Professional Patient

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    I was in excellent shape when this all hit. Working out is what keeps me sane and it's been a social outlet. It's part of who I am.

    I'm not as bad as some people, but throughout the past year, I've slept 10-16 hours a day, had a clear head only an hour on many days, have been dizzy, had trouble walking at times, and had PEM with too much physical, mental, or emotional exertion.

    There are several kinds of damage exercise can cause, and I've discussed the wisdom of exercising with my doctor, a very perceptive naturopath who's treated many CFS patients.

    We decided I should keep exercising, but stay at 70-80% of what I think I can do on any given day, to promote mitochondrial biogenesis, brain derived neurotropic factor and get other benefits of exercise.

    I get IV and oral supplements to support my mitochondria and antioxidants to head off oxidative stress. I take T3, T4, B5, B12, carnitine, hydrocortisone, NADH, d-ribose, BCAAs, creatine, and KetoCaNa prior to exercise.

    What I do these days is diminished, but I've managed to keep lifting weights 5-6 days a week. I do a short cardio warm up, then 2 sets of 6-8 either upper or lower body exercises, at 50% of my former strength. Some days, I've only done 2 or 3 exercises, then called it a day

    I take my time, sit, lie down, and rest frequently, and generally need 2-4 5-10 minute naps right on the gym floor, when I feel woozy.

    Then I go home to bed and sleep.

    Cardio trashes me, but the low level weightlifting seems to work.

    I've been starting to improve over the past 3 months, and am finding I need less rest, but can't necessarily do more yet.

    Overall, I still look like I'm in good shape for a 55 year old woman, even though what I just described is the only activity I've gotten on some days with the rest spent on the couch or in bed. But I do feel that fighting this battle has been helpful to me. I just can't fight very hard.

    It's finding what you CAN do, and having gentle perseverance.
     
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  20. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    Gosh, reading this thread, it just strikes me how indoctrinated we are into the idea that physical fitness is some kind of moral good. It is nice when you body looks "good" (according to our social mores). But keeping fit is considered a moral good too (the "right thing to do"). These things have been risen to the level of major sources of self-esteem for many people.

    Of course, some people also need to be reasonably fit to enjoy doing their favourite things - but since we all have ME and can't do these things anyway, this part of the issue doesn't seem relevant to us here.

    The OP's terrible fear of deconditioning really brings to the fore how much our self-esteem can be tied up with physical fitness. Keeping fit is not a good health practice for ME sufferers - its the opposite. But still we feel somehow less worthy because we aren't fit - that's how powerful these social standards are!

    Not trying to put myself "above" all this. I also struggle with my ghastly fat body (I was a fitness instructor before I got ill). We're all vulnerable. But maybe it helps if we all occasionally take a step back and see it for what it is.
     

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