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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. xchocoholic

    xchocoholic Senior Member

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    I can see why saying "pushing past" could be misunderstood. It makes sense in my head. Lol.

    I wish I'd known about caffeine pills back in 2008. My energy level is so much better. Caffeine drinks have never worked this way for me.

    It would be great if I were mentally sharp but I'm having trouble getting provigil. So far the supplements and dietary changes I made didn't work for this. Not that I tried every supplement available but I tried most of the ones listed as brain enhancers.

    I'm unclear still on what roll the caffeine pill has on my OI. I've been told that my hr is irregular lately but I don't know if that's new. I'll let y'all know if I kick the bucket. Lol.

    Hope you find something that works for you. Tc .. x
     
    Last edited: May 30, 2014
  2. Mij

    Mij Senior Member

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    I'm ok with just a small amount of coffee every other day. It may help with OI in small amounts as long as it doesn't crash the adrenals, which is the problem I have drinking a normal size mug. There is an herb in Ayudevic medicine combined with coffee that helps with mental clarity. Just a short time ago someone posted it but I think it was deleted because he was promoting his business. Darn I don't remember the name of the herb but the caffiene apparantly increases it's transport into the brain.
     
    xchocoholic likes this.
  3. SOC

    SOC Moderator and Senior Member

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    PEM certainly isn't ignorable in my experience. Yes, if I do a little more than usual and have a little fatigue and muscle aches as a result, that's ignorable, but I don't consider that PEM. PEM (like I have right now, unfortunately) is entirely different and impossible to ignore. Continuing normal activities through PEM only makes it worse, last longer, and prevents return to my pre-PEM condition.

    I have used caffeine, rarely, to get through a short (maybe 2 hrs) event, but the consequence is high. Afterwards, I feel even worse and my PEM is extended by days, if not weeks.
     
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  4. Mij

    Mij Senior Member

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    @SOC It is totally impossible for me to ignore too. I can't even try, everything stops and I'm horizontal until it passes.

    Did you have problems with coffee pre ME? I did.
     
  5. xchocoholic

    xchocoholic Senior Member

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    Hmmm. Maybe I should've phrased this differently.

    How about "Taking caffeine pills minimizes my pem to the point where I'm not asleep on the couch all day and I don't feel uncoordinated. "

    Previously those were my pem symptoms. Day one would be a total waste. Eat then sleep. Repeat till bedtime. Day 2 would mean less sleeping but still couldn't get out. Day 3 would be iffy as far as whether I could get out.

    I'm not thinking as clearly as I do when I'm rested but my goal is to be productive and stay off the couch. So I minimized my pem.

    Caffeine in pill form is working totally different for me than caffeine in coffee, tea or chocolate.

    For example, I was out running errands yesterday which normally would've caused 2-3 days of pem. Today I felt tired and uncoordinated until I took caffeine.

    Within 30 minutes, I went for a 30 minute walk. Followed by eating lunch. Went and laid out the the pool for an hour.

    Came home, ate again and laid out for another 30 minutes. Then started working on a plant project I started a few weeks ago. I'm wicking 6 planters with cotton strands that I got from cutting up an old washcloth. I'll add plant fabric, dirt and plants next. I'm not struggling thinking this thru at all.

    I'm laying down again now due to OI but I'm not tired or sleepy.
    As soon as my OI / hypoperfusion clears I'll be back up working on my plants.

    Please bear with me. This is new for me so I'm working on how to explain it. This is typical of what I did from Feb till April this year until I got a uti that I thought was a cfs crash. All this is new.

    Tc .. x
     
    Last edited: May 30, 2014
  6. ahmo

    ahmo Senior Member

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    My success with my HIT program seems, then, to indicate how much progress I've made since implementing my methylation pathway remediation, particularly Freddd's Protocol. I am extremely grateful.:):balloons:
     
  7. pone

    pone

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    For an "average" person, how much of the walking activity is aerobic when pulse is at 110 or lower?
     
  8. pone

    pone

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    Hi Artstu, when you were at your worst with CFS, what specific symptoms did you have after this kind of exercise?

    The exercise you describe is strongly aerobic, with occasional spurts of anaerobic, and there is no way someone with fully developed CFS could do that. That would lead to punishing muscle fatigue, acid burning, general weakness, mental fog, etc, sometimes for days after the exercise.
     
  9. pone

    pone

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    It's interesting that you don't feel the muscle weakness but instead just get the neurological part. Do you have high inflammation markers like hscrp and homocysteine? It almost makes me wonder if what you are experiencing is CFS.

    Part of exercise is to produce inflammation in muscles you stress. It is the repair of that inflammation that makes you stronger. Maybe in your case the inflammation in muscles is starting some cascade of other inflammatory events that end up cause some neurological inflammation or side effect?

    I definitely have the delayed reactions you refer to. Typically for me after exercise day one involves the muscle burn, and day two involves general sense of malaise, problems sleeping, problems breathing (forced deep respiration to get rid of acid from the blood). I'm getting better at not doing the things that would extend me out to three days.
     
  10. pone

    pone

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    Remember the person is still peddling in an aerobic range during the 40 second breaks....

    This exercise is highly aerobic and would be crushing to someone with fully developed CFS.

    What might work for someone with CFS is an eight second all-out sprint, followed by a two minute stationery rest. Difficult to make that interesting on a bike.
     
  11. Mij

    Mij Senior Member

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    @pone I understand what you are saying. The exercise test is geared towards the normal population. I was more interested in the genetic profile, if whether there are differences in exercise results in an improved CFS patient with a genetic "responder" profile vs a "non responder" profile CFS patient. Would be interesting to know if it affects the outcome.
     
    justy likes this.
  12. SOC

    SOC Moderator and Senior Member

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    I never drank coffee. It never appealed to me. I did drink some caffeinated soft drinks pre-ME so I could manage some caffeine. Even now, I can drink the occasional caffeinated soft drink when I'm not in PEM. But I can't use it to increase my activity without paying with PEM. PEM is not affected by caffeine (for me).
     
  13. taniaaust1

    taniaaust1 Senior Member

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    Great post

    I probably would find that a good way to exercise too if I felt up to adding exercise in the mix of what Im already doing. Any sustained weight hold, the object doesnt even have to be heavy! gives me not just arm burn out (fatigue in arms) but also pain in my muscles/wrists or whatever, so short weight lifting with minimum reps probably would be one way I could exercise. I havent experiemented with that to know what about of reps I could do but I know I cant do clothes scrubbing reps for more then about 40 seconds if that without having to stop and rest.

    I have experiemented with swimming in the past thinking that I may be able to do that, but that experiment just showed me that swimming is bad for me too.
    Treading water gets my heart rate up too much.. even with the boucany of my body, its too much to do that for a 2-3 minutes.

    Swimming a quick lap and then resting before doing it again... well after a short time it catches up on me even if Im resting minutes between laps. I experiemented too with longer rest times but it still didnt help.. there is only so many laps I can do (with rest in between).. just a few.. and then I cant do more as I feel quite ill (malaised)

    I used to compete in swimming before I got sick but with the ME/CFS Im now like a whale in the water! its crazy what skills one can loose with this illness, I now have no natural swimming grace and it takes me nearly twice as long to swim a lap). A 50metre (standard pool) length swim without a break is bad for me (maybe if I tried 25metre laps with several minutes in between, maybe that would work better??). I only managed about 4 laps too (with rest in between).. its all very sad when I used to easily swim 80 50 metres laps and do that without a break, swimming was effortless to me before I got ill. When healthy it used to be no harder for me then walking was... swimming 50metres is now a major workout.

    Anyway.. After experimenting with swimming as a ME/CFS exercise (cause some ME/CFS specialists suggest swimming for us) I had to give up that idea.

    Slow walking is bad for me due to the OI/POTS. If Im on my feet and walking a short distance, I try to do it fast as that is better thing thou once my heart rate is up or I start to get warm at all, its bad if I try to maintain that up.

    When i was able to exercise with the ME. I used to do a walk/run cycle to exercise (at night when cold). 30-40 seconds run then a slow walk for 1- 1.5 mins to allow heart rate to calm and then run again and continue in that manner. This way I guess i was stopping myself from keeping my heart rate around certain level. not keeping it high for too long. I could do that for 2 hrs .. but irronically standing still.. I couldnt do and was collapsing a heap at supermarket checkouts after about 1 min.

    the slow walking after the 30-45 second run.. would also allow my muscles time to recover from this weird burn out they did after those seconds time periods of running (where I could hardly move them, weighted limbs feeling like bricks on feet and would also get pain in my legs). I think my mito wasnt producing enough energy or something once what was there was used, so I had to then go slow and allow some energy to build up again???

    2-3 mths of that and I couldnt even really run for longer periods (around 5 seconds longer.. it was nearly a nil improvement after months), I didnt build up stamina to run longer at all.

    Anyway I think heart rate and mitochrondia play a huge part in importance when it comes to the exercise issues we have.

    As far as exercise goes, I think the only way for us to exercise is with weights using a very low amount repetitions.
     
    Last edited: May 30, 2014
    Valentijn likes this.
  14. taniaaust1

    taniaaust1 Senior Member

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    I personally would never try to exercise in the morning as then after that session you then have all your daily activities on top.. hence I used to exercise at night when I'd know how my body was and had been and so it would afterwards get a good rest (sleep).

    That techique you mentioned is basically just what I was doing with just a little more high intensity time. Unfortunately in my case it didnt help any with no real benefit to it and I couldnt really progress in longer high intensity after months of doing it. So I guess this means if glycogen is my issue it didnt help it in my case. Best luck with having success with that method.
     
  15. WillowJ

    WillowJ Senior Member

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    when I was in remission I was able to do exercise in careful amounts (I rested every 10 minutes or something like that, though by this means I could keep it up for a while).

    Like Heaps, I cannot build endurance or cause anything to get better with exercise (except maybe loosen tight muscles, but that's temporary: I can't fix anything long-lasting).
    However I can cause a deterioration and I have done this several times. I like to be active and that feels natural and good to me, except now i feel rotten really fast so I learned not to do that, and I learned more lately to walk really slow so I can breathe. Breathing is a little bit important, I think. :)

    at this point I struggle with the most basic activities of daily living, like heating food, so it would be pretty pointless to try to exercise because then I wouldn't be able to eat. ;)

    however I always make a point of keeping as much motion as I can, even if that just means removing myself from my bed to an easy chair and getting up once in a while to do "little" things like get something to drink or close the curtains.

    At other times this has allowed a short walk outside, very light housework, etc.
     
    Last edited: May 31, 2014
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  16. taniaaust1

    taniaaust1 Senior Member

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    Turns out I have that athlete gene on my 20andME results (its one of the ones they used to report on), I expected I would have it due to how I was and how family members are (a couple of them were almost selected for olympic team and another played league football.. many family members in state teams) and it turned out I did have it.

    Maybe you are a little right there with that, when I was in ME remission, I went and did a 100km run (Trailblazers) on no training for it at all. (I must say that was extremely stupid thing to do as all my team members trained for many months.. I only made 90km cause I got a bad groin injury during it where I could hardly raise my legs and also ended up with hypothermia when I continued on like that.. ambulance people stopped me after I collapsed due to hypothermia.. told me I'd die if I continued without them treating me).

    Its food for thought.. maybe that gene helped me get into that ME remission? but on the other hand, maybe a gene like this could work against a person as athletes really know how to push themselves very hard! and are very strong in the mind and dont give up (will run throu pain just like I kept doing once I injured myself during the marathon) so maybe those with this gene could also do themselves more damage due to this kind of strength. I can easily push myself till I completely collapse. I was completely bedridden for 9mths after pushing myself too hard early years of illness, before I knew not to do that.

    So yeah I agree that having a gene like this may be working both ways. Did anyone else here have that athlete gene? which all the olympic athletics have one or two copies of? Id like to know if this group of us are more likely to have a remission as I did? Maybe I should try to set up a poll one time to compare remission(s) in the ones with this gene to the ones who dont have it. Having ME/CFS and its degree is probably more noticable in degree to an athlete then someone who has a easy desk job who may not be pushing.
     
    Last edited: May 30, 2014
  17. taniaaust1

    taniaaust1 Senior Member

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    Thanks greatly for sharing that as I'd always wondered about him and had assumed he couldnt have had ME as who could do intensive training with this illness. All that makes a lot of sense thou.

    I think that may be why I didnt train for a marathon I did while I was in remission.. maybe I was scared the training would bring it back.. so I just went into the marathon without training (and that marathon didnt harm me at all.. no ME payback or did it bring it back).
     
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  18. SOC

    SOC Moderator and Senior Member

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    This whole athlete gene thing is interesting. I was a gymnast and a sprinter, but no matter how hard I trained -- and I trained A LOT -- I was never able to develop the stamina necessary for any kind of distance running. This might explain that. @taniaaust1, what gene is that? I'd love to look it up in my 23andme results.
     
  19. taniaaust1

    taniaaust1 Senior Member

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    I havent heard that before, thanks interesting. Im not sure thou if that suits all of us. If I havent done too much, Im basically healthy at rest (well layin rest due to OI sitting can be a strain on me) other then my memory issues which are always there and some IBS-C which is always there to various degrees.

    I doubt very very much thou with even being healthy at rest that I could push, I know I still crash very severely when I push.
     
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  20. pone

    pone

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    It's good to be loved, thanks. :)


    I have a similar story. I carried in eight heavy water bottles from the front door to the kitchen, and in total this created about two minutes of continuous activity. That alone was enough to set off muscle burn in the arms for two days, and it even gave me some abnormal breathing. Yet a weight workout where I observe short durations and long recovery periods seems to be tolerated.

    So far my swimming experiment was a fail. But it takes me about 12 seconds to swim the length of the pool at a sprint. I didn't have profound negative reactions, but the next day the muscle was sore and I didn't feel well or refreshed as exercise should make you feel. And the day after that I could not sleep and had a bad neurological impact.

    I think I will attempt another experiment where I sprint for six seconds, and then I simply go into an ultra-slow gentle stroke to get the length completed.
     

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