Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Exercise strategies?

Discussion in 'Lifestyle Management' started by markielock, Sep 1, 2017.

  1. markielock

    markielock staying independent, one day at a time

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    The benefits of building strength appears to be the antithesis of the symptoms we deal with every day: more energy, a healthier body, improved mental health etc. However, it feels like a chicken and egg story: if being stronger would help me manage my life and symptoms easier, how do I get there when my body finds it incredibly difficult to do it, and do it consistently.

    I know it's a rather controversial topic too because of GET and what not.

    My question is: has anyone found any exercise strategies they can do semi-consistently? I understand it is highly likely that what works for one won't work for all.

    I'm just tired of my body feeling unused and wasting away yet also feeling like I've already done an intense workout. Always sitting, sedentary and unable to make my body strong makes me worry for the future.

    Thanks guys :)
     
  2. Philipp

    Philipp

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    Back when I was a lot better (i.e., the first three years) I found that doing single sets of any exercise was a reasonable good approach. I tended to have to drop repetitions by about half towards the second set.
    No bike/treadmill/climber type of work at all, that just resulted in PEM and not much else. If you are really fine, doing intervals once a week or two weeks at a really reduced workload (15s work / 105s active rest x 4 vs 30s work / 90s active rest x 8) may be possible, but I do not know if that has any impact on your long-term health in either direction.
    The reasoning behind this I would use nowadays is that it might be fine to approach your anaerobic threshold once and then quit until you recovered (which may take a couple days to a week).

    Exercise selection and doing them with good form is a bigger problem because POTS may impact how well you can do stuff where you move your head a lot (anything with a reasonable amount of floor-to-standing-transition, i.e. turkish get-ups are the worst, deadlifts/squats second, stationary presses/rows are likely best) or cannot do sitting/lying down (e.g. standing presses vs seated). Fatigue in the nervous system sets in way faster than locally, leading to a breakdown in form (vastly increased injury risk!) and mental PEM. Since you will subconsciously perform movements in a way that is most effective for you unless you actively engage in fighting that, you will ingrain worse and worse movement patterns over time and increase pain at rest (because stuff you need for posture and breathing will be more inhibited). Since we do worse at tasks that involve active attention and working memory, this is a big issue and probably the primary reason why I had given up on training pretty much entirely as my ME got worse.

    However, there was a group of people who apparently trained with yoga/corrective exercise-type movements up until just 40% of what they perceived as what they could do (iirc). That would mean that you feel like you have done almost nothing afterwards. This is probably still not an option for many people because initiating movement itself gets horribly hard and taxing as illness progresses, but it may be something to cautiously play around with if you are reasonably well. Maybe paired with 'PEM busters' (Jaime apparently can occasionally go for hikes again if she overloads on CoQ10 before). Some technical outside help would be nice as well (experienced trainer who has enough presence of mind to accurately assess what your 40% likely are, because it is way less than you think even if you were already good at self-observation and could take your emotions out of it, and notices when your form starts breaking down before you do - doing movements is already hard enough to focus on as it is).
     
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  3. AndyPandy

    AndyPandy Making the most of it

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    The only thing I've managed to do on a kind of regular basis is a few yoga stretches on the floor. They seem to help with my generalised pain, gut pain and back pain. Also help with flexibility. Only when I'm well enough which certainly isn't every day.

    Absolutely nothing like the yoga or exercise routine I had before ME. I was very fit before ME and loved exercising. I miss being strong and fit.

    Best wishes Andy
     
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  4. Jill

    Jill Senior Member

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    Marty,
    I feel the same. I've been ill along time and with age ( menopause) my muscles have become a lot less and I'm running into other problems now too , unless it's all related. I've somehow injured my hip and it's not recovering. X-rays show it's not the bone so it's ligament or tendons or muscles. My problem is I can't trust physios, but I have to do something . I may also have EDS which is a complicating factor. I find swimming to be good but it's not great in building muscle where they need to be built! I kinda need resistance under water but there is no such thing really . I have a short mat routine I do working on my weak core. Unfortunately I also have patella femoral syndrome in both knees so biking is out of question . Like andy says upright squats are a killer . Rum bent bike is always suggested - that could be good for you ( kills my knees ). It's a huge problem that does my head in as I get old with this illness. Am going to see if I can lean on the knee arthritis diagnosis and get some help in the system that way . It's like every other illness has a worker that takes free classes ( at least here in NZ). I intend to piggyback off that . Sick of having to pay privately for advice that makes me worse. Apparently na cy klimas has a DVD on how to exercise within the limits of the illness using a heart rate monitor .
     
  5. AndyPandy

    AndyPandy Making the most of it

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    "Like andy says upright squats are a killer"
    @Jill I think you might have me mixed up with someone else. :)
     
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  6. Hilary

    Hilary Senior Member

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    There are so many of us on here who used to love exercise and being active and athletic - it is very hard to come to terms with the loss of this, even after years of being ill.

    I do about 20 mins stretching and yoga moves most mornings but shorten things or miss it altogether if I'm feeling really rubbish. It's helped back pain hugely and keeps my joints flexible I think.
     
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  7. Wonko

    Wonko Senior Member

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    The other side.
    No.

    Several years ago I tried free weights strength training, it seemed to work for a while, but I'm still living with the negative consequences - I still consider that straight out strength training was the least damaging option available to me then, or now. It was that or nothing, and I wish I had picked nothing.
     
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  8. Mel9

    Mel9 Senior Member

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    40 seconds plank, every two days. So far, no ill effects.
     
  9. *GG*

    *GG* Senior Member

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    Yes, but not going to broadcast it here. PM me for more details :)

    GG
     
  10. TigerLilea

    TigerLilea Senior Member

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    I'm one of the fortunate people with CFS/ME that can be somewhat physically active without severely crashing. However, if I overdo anything then I do crash for days to weeks. When I'm able to I get outside and do yard work which is my first choice for exercise. If the weather isn't cooperating then I will do short workouts on either my treadmill or Gazelle. I also try and do some weights, kettlebells, or workout on my TotalGym.

    I'm hoping that once the weather cools down to be able to get back to doing some regular exercise routine each day. The past two years I haven't been very consistent with it due to several different health issues that came up not related to CFS/ME. I am getting older and I want to be able to take care of myself well into my 90s and worry that if I don't get more active now, that I will start to decline mentally and physically, and end up in a wheelchair in a nursing home.
     
  11. Esther12

    Esther12 Senior Member

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    I've done pilates, core muscles exercises, etc. Generally, I find that I prefer using any extra energy I have to get outside, or do other things though. I will try to hold my core in while moving around to get a bit more muscle activity there. I think that there can be a psychological pleasure from pushing oneself a bit, and that it can be worth trying to find ways of getting that without causing oneself problems.
     
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  12. TigerLilea

    TigerLilea Senior Member

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    I definitely feel much better mentally and emotionally when I'm keeping physically active. Also I find that I sleep much better at night. Unfortunately I don't feel anymore energetic the next day. Being inactive I believe contributes to feeling down and depressed. I know that for some people with CFS/ME that it is impossible for them to do much of anything, especially those with POTS. :(
     
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  13. ahimsa

    ahimsa Senior Member

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    My primary "exercise strategy" is to avoid it. And then try not to be depressed about it. :(

    Seriously, my day to day activities are more than enough exertion for me! I'm not severe and in bed all the time (thankfully). But I'm not able to work (not even part time) and I'm just barely able to do daily activities of living. Adding any "exercise" would mean the very small number of activities that I can do would probably disappear.

    I'm guessing that the people who are considering exercise don't get PEM? Or they have found some way to "exercise" within their limits?

    All I know is that my body used to love exercise! I went hiking, did weight lifting on a split routine, went to aerobics classes, and more. I even climbed to the summit of Mount Hood - twice.

    Exercise used to mean an increase of either aerobic ability or strength or both. But now, sadly, that simply does not work for me any more. I tried a lot of different exercise ideas in my early years of illness, including anaerobic exercises like weight lifting, and nothing worked. It probably made me worse.

    In general, even though I HATE resting, the more rest I get, the better I feel - at least physically. Also, the more rest I get, the better my sleep is. This seems like a paradox since for normal people some exercise usually means better sleep. But my doctor says it has to do with my broken autonomic system - orthostatic intolerance.

    I do agree with @Esther12 that emotionally there is something to be said for pushing past my limits, achieving some small goal, and then crashing afterwards. So, I still do that from time to time even though I'm sure the push/crash is not good for me.

    It's just very frustrating to want to do so much and to be able to do so little.

    Edited: I thought I should add that I've been sick since 1990, unable to work since 2000, just for some context.
     
    Last edited: Sep 1, 2017
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  14. Hilary

    Hilary Senior Member

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    I have recently bought myself an electric bicycle. It's quite hilly where I live and I can't manage the hills on a normal bicycle but this electric one is amazing - I'm stunned by how easy it makes the hills and it is indeed lovely to get out in the fresh air. I just have to be careful not to overdo it without noticing -which happens so easily.
    The only disadvantage is that it is heavy - about 20kg - and I have to heave it up a couple of steps and in through my front door as I live in a terraced cottage. At the moment not doing more than about 10-15 mins on it, in an effort not to get carried away............:rolleyes:
     
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  15. Hilary

    Hilary Senior Member

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    Should add that I don't lift it - just kind of roll it up the steps. I've been ill since 1993 and I certainly get PEM if I overstep the (invisible and variable) limit...:(
     
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  16. Stretched

    Stretched Senior Member

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    The trouble with weights is that they're heavy:(
     
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  17. TigerLilea

    TigerLilea Senior Member

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    I do get PEM but have learned to slow down or stop once I feel like I'm getting to the point of being too exhausted. I have to add that I don't have POTS or OI.
     
  18. AndyPandy

    AndyPandy Making the most of it

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    They are @Stretched :) although I have a set of little dumbbells that weigh 500gms!
     
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  19. TigerLilea

    TigerLilea Senior Member

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    Mine are 1 lb and 2 lbs. And even those tire me out quickly. I have to laugh when I'm watching videos and they recommend starting off with a low weight of 5 lbs. o_O
     
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  20. otterjack

    otterjack

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    I use the majority of my available energy for gentle cardio and medium weights at the gym. It helps me mentally. But I'm 'lucky' in that my ME is moderate. Not sure how the more severely affected could deal with exercise.

    When I'm ill I'll sometime use resistance bands to stretch whilst lying on the sofa. Resistance bands are extremely useful as they can be used for resistance training too, to strengthen almost all the muscle groups.
     
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