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has anyone really benefited ie cured by exercise?

Discussion in 'General Treatment' started by jann1033, May 16, 2014.

  1. taniaaust1

    taniaaust1

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    I rather use that little to do something with to do something which needs doing ather then wasting it on just going to a walk to the garden gate and back for no reason at all. The equalivant of doing that could be to get half of my clothes hung out to dry rather then then going smelly in the washing machine!!. For some of uts it just wouldnt be sensible to waste our spoons on doing an activity just to walk to a garden gate and back (unless it is to collect the mail).

    Many of us already are doing too much in our daily lives just in order to live a life and survive.
     
    jann1033, Sidereal, rosie26 and 4 others like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    Doesn't sound like a good friend for an ME patient to have. A mobility scooter makes the difference between me being stuck in the house all day, and being able to go out for "walks", go to shops, chat with people, enjoy nature, etc.

    The Dutch CBT group is opposed to mobility aids because they think we have a psychosomatic problem and just need to exercise more. Is that what you or your friend think?

    Too many highly disabled ME patients have enough insecurities about using mobility aids that they desperately need, and that will make their lives much more pleasant. We don't need to hear bullshit about mobility aids interfering with recovery here as well.

    We have PEM. Excess exertion and even normal or minimal exertion makes us much sicker. It does not help us, and you need to come to terms with that.
     
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  3. SOC

    SOC Senior Member

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    o_O
    I don't follow this logic. I can just as easily say, "Think of all the people who have been ill for a long time, they don't eat a high calorie/high fat diet but remain ill." By your logic that would mean that eating a high calorie/high fat diet would make them less ill.

    Try replacing "exercise" in your statement with anything else to see how the logic fails.
    1. "Another way of looking at it is to think of all the people who have been ill for a long time, they don't participate in religious services but remain ill." By your logic, we should conclude that going to religious services would cure ME. o_O

    2. "Another way of looking at it is to think of all the people who have been ill for a long time, they don't participate in Japanese language classes but remain ill." By your logic, we should conclude that participating in Japanese language classes would cure ME. o_O

    3. "Another way of looking at it is to think of all the people who have been ill for a long time, they don't participate in midnight headstands during the full moon but remain ill." By your logic, we should conclude that participating in midnight headstands during the full moon would cure ME. o_O

    See how it doesn't make sense?

    I think this clarifies what in your position has offended so many members. You are implying that we are NOT doing "a little bit". Most of us are doing much more than "a little bit". We are doing laundry, cooking meals, cleaning house, doing grocery shopping, and much more. That is significantly more effort than "walking to the garden gate and back". Why do you assume other members are not even doing a little bit of activity?

    You said in another thread
    [my bolding]
    The difference between you and the rest of us is NOT that we're not active. It's that we choose to become more functional -- have an improved ability to do other things -- rather than expend energy walking and cycling and not be able to do basic self-care, take care of our homes and families, or earn a living.

    I would appreciate it if you would stop implying that people with ME who choose not to do aerobic exercise are not doing any activity. We ARE doing "a little bit". Some of us are doing a lot more than "a little bit" just by being mature adults trying to take care of our most fundamental responsibilities.
     
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  4. taniaaust1

    taniaaust1

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    Encouragement to exercise, I think only lazy people could need encouragement and I think most with ME just are not lazy and in fact may be the opposite!! Most of us have got worst due to pushing ourselves too much to do things rather then resting when we should, an indication that we arent lazy.

    Implying people are lazy eg just need encouragement to be more active, many would view that as insultive. A persons motivation towards activity when one hs this illness, the feeling non motivated happens with the sicker we are and probably is a protective thing to stop ourselves from further making ourselves worst.
     
    Last edited: May 25, 2014
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  5. taniaaust1

    taniaaust1

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    I look at Artstu's case like that too. She said she stuck to her limits and walked for two years for 20 mins before she had a shift in her condtion. Looking at that fact in a logical way, it would actually imply it wasnt the exercise which helped her at all.. if it was the exercise, she would of improved far sooner!
     
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  6. taniaaust1

    taniaaust1

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    I'd like to say that my experience to exercise when I could exercise regularly is the same as Sushi's. It actually didnt help me at all thou I was able to do it. I was no fitter or stronger 3 mths later even with exercising daily or every second day (I was doing 2 hrs of exercise at a time on those days).

    The model that if you can exercise without a crash or setback, that that is going to help your ME/CFS further.. in my case has proven to be just wrong. My body reaches a point it just cant improve beyond.

    Unlike Sushi, I had no OI improvement with doing months of leg exercises for my dysautonomia.

    Artstu's quote above.

    When I was able to exercise.. 2 hrs a day or every second day. I was doing high intensity runs in 30-45 second lots (before dizziness set in and like my muscles would start to like burn out and start to lock up and my leg muscles would go into pain) so I had to walk again for a minute or two for dizziness and other symptoms to calm down (otherwise I'd just get to the point where I couldnt move or would collapse.. inability to get my heart rate up?), before being able to do a short run again. I could do this run and walk thing for 2 hrs straight!! (so was fit) but interesting.. this exercise didnt help any of my ME/CFS at all thou I could do it without after affects at that point of time.

    With that exercise my ME/CFS baseline even months later was the same.. and my ability to run didnt increase... the exercise didnt increase my ability to do more at all. Nor did it even help one of my symptoms.

    From what Ive read, this seems to be an issue with mitochondria and energy recycling. I have something very wrong with my energy system which doesnt fix with exercise. Im unable to do any form of substained aerobic activity which gets my heart rate up and holds it there.
     
    Last edited: May 25, 2014
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  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Maybe it works differently if you have POTS? I don't have POTS, but OI without POTS.

    Sushi
     
    SOC likes this.
  8. taniaaust1

    taniaaust1

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    Actually strengthening the leg muscles is one of the treatments for POTS so is something which can help many POTS cases.
     
  9. taniaaust1

    taniaaust1

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    It sounds as if you are running on adrenaline.

    Hi, from what you said, I think you may have or have had POTS and your improvement may a lot of it be due to helping that!

    When I was doing the exercise I mentioned, due to my severe POTS, I was doing it in the cold of winter, doing my run/walk at night.. sometimes in the rain, sometimes even in hail. To keep myself cold enough to exercise.. I even ran wearing a wet T-shirt (I probably was putting myself at risk of hypothermina to do this exercise). Its the only way I could exercise is by doing it when cool and staying cool. My POTS at that time was a huge limiting factor and was probably far worst then my ME at that point of time.

    POTS would make sense why high intensity could help someone much more then low intensity. In my case.. a low intensity walk was usually bad as with my bad POTS I then wasnt getting enough blood to my brain.. whereas if I ran (high intensity) I felt good while doing it for a short time as then I was getting blood getting to my brain (well till my heart rate got too high for the ME/CFS or I got too warm which then made the POTS hit bad).

    Most with POTS know that standing still and not moving much.. is far worst for POTS then moving while on ones feet.

    Exercise also can really help POTS people and is a normal therapy for this (thou in the case of ME/CFS people cause of the issues exercises and issues postexertionally, isnt good for most of us).

    POTS people have trouble exercising when its warm.

    Anyway . I have a theory from reading your posts and what you said, that you do had/have a mild case ME/CFS, but really complicated due to coexisting POTS .. and the exercise you did and your improvement was much due to helping the POTS. (or maybe you just have POTS? that can cause many symptoms and be mistaken for ME/cfs).

    Where you ever tilt table tested for POTS and OI issues?

    I have a question which may be tricky for you to answer but I think it needs to be asked. What is there about your case which rules out that your problems could be from only having POTS? What makes you think you have ME/CFS and possibly not just POTS?

    Your lack of understanding towards what most of us experience, could well be due to you've been misdiagnosed and as I said.. POTS would fit things you've said.
     
    Last edited: May 25, 2014
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  10. lnester7

    lnester7 Seven

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    Here is my personal experience: I have worse OI than CFS, so this will not apply much to all.

    I am between a hard rock and a hard place because I ALWAYS relapse while exercising, But I do not move forward without it. So I am rethinking the issue. I think I will go back to do strengthening of my leg very gentle w a elastic band and core (easy abs) while laying down and build up slowly so I can work the Cardio EVENTUALLY.
     
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  11. manna

    manna Senior Member

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    yes some can't make use of tai chi, myself included, i would not benefit if i did it now. reiki did little for me either. ive done my reiki one which i enjoyed. tai chi would make me worse if i did it today. i have seen a "tai chi master"...fortunately what he did to me did "catch" and it produced quite a powerfull healing. id travelled 100 miles to see him and giggled all the way back and felt "full to the brim" with energy. unfortunately i thought id do some other healing when i got ho,me and my interventionm spoiled it. i couldn't ground the same treatment now. some could though, i think. chi transference, from a tai chi master, over time, might even cure the condition for some, imo.
     
  12. Artstu

    Artstu Senior Member

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    Oh come on, that's ridiculous and you know it. M.E experts and some sufferers agree that exercise is good for us. I've never suggested exercise can cure us.

    I know you can run rings around me intellectually and pick holes in almost anything I type.
    I know I said being fitter didn't translate into being able to do more everyday things. That's not true really, I've forgotten how bad I was a few years ago. and perhaps wishing I were fully fit and able to function normally again. I am better than I was, and I believe that is because I'm fitter, and I'm fitter because I exercised.

    No one seems to grasp what I'm trying to convey here. I'll expand a little, you probably still won't be able to relate, and my brain isn't working well today.

    When an athlete wants to increase their ability they use interval training, high intensity short duration bursts. That's what I've done. I need to rest now.
     
  13. Artstu

    Artstu Senior Member

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    I think you're right.

    I'll also look into POTS again. I know a tilt table test is via a referral to hospital.
     
  14. manna

    manna Senior Member

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    i never mentioned chakras and wasn't relating to them, specifically, in what i said.
    more to do with meridians.
     
  15. Artstu

    Artstu Senior Member

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    I'm sorry it is not my intention to cause offence. For me at least not getting a mobility scooter was I believe a pivotal moment. I can't speak for anyone else.

    I'm not sure what to say about you finding posts about benefiting from exercise offensive in a thread about benefiting from exercise really. I feel saddened that you find something positive offensive, particularly that you feel the need to show your contempt at something I find helpful.
     
    Last edited: May 26, 2014
  16. manna

    manna Senior Member

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    the thread is not about folk, with me/cfs, who have benefitted from exercise but whether or not that's even possible.
     
  17. Artstu

    Artstu Senior Member

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    Well either way it is important not to fall foul of the rules

     
  18. manna

    manna Senior Member

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    how quickly and easily we forget our own misrepresentations, but not those of others, if even they were so. i do it too.
     
  19. Artstu

    Artstu Senior Member

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    That's over my head. I struggle with the rules.
     
  20. jann1033

    jann1033 Senior Member

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    I have resisted using even a can for 26 yes. Recently the pain from my arthritis forced me to start( and get a handicap placard). I am so much less tired I'm shocked.
    CFS fatigue doesn't equal a lack of willpower, it equals a lack if adequate energy production. Wish I hadn't been so pigheaded yrs ago. Why not live a fuller life.
    Obviously its not a cure but it made the difference of going to the fruit market vs not
     
    Last edited: May 26, 2014
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