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tips for struggling with exercise

Discussion in 'Lifestyle Management' started by Gavman, Jul 27, 2011.

  1. Gavman

    Gavman Senior Member

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    I have managed to get back on track somewhat to exercise.
    The main problems seem to be using adrenaline or strength when the CFS is at its largest. I believe body movement is very important but from what i've found graded exercise focuses around gyms or walking.

    Even when i was fit, my body hated walking. It tires me out quicker than any other exercise.

    I was able to teach and train in mixed martial arts which involves alot of fitness. Basically i stopped using adrenaline and strength, exercises that are good for this are:
    Any thing that moves the body without massively increasing heart rate.

    While graded exercises focuses on goals, I find if i let my body measure it i tend to go better.

    Encouraged
    Yoga
    Tai Chi
    Qi Gong
    Stretches
    Walking
    Very light jogging (depending on how you're going)

    Discouraged:
    Heavy weights
    Sprinting
    Cardio
    Using anger while exercising.

    Supplements that can help:
    Iron (red blood cells)
    B12 (again red blood cells)
    Magnesium (releases muscles)
    Potassium/sodium (electrolyte function)
    Sea salt (salt is useful for the kidneys + small amounts of trace minerals)
    Calcium (pumps the heart

    Body therapies can help too, having practitioners focus around the diaphragm and kidneys especially works well for me.

    Have other people found what works well for them?
    I am by no means cured exercise wise but i've found ways to work around not moving.
  2. ukxmrv

    ukxmrv Senior Member

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    I can't cope with any of the exercises you mentioned sadly. Anything like Tai chi that uses poses knocks me as badly as running. Stretches pull my hyper mobile ligaments. Same with Yoga, which does both.

    If I do any exercise it uses up the strength/energy that I need just to be able to bathe, brush my hair or cook.

    I've been through a standard old fashioned graded exercise program and then the more recent graded activity ones. All left me much worse off after.

    For some people the "bar" is set in one place and for others another. This can change over the years and decades. The trick is finding your personal bar.
  3. mellster

    mellster Marco

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    Hey Gav,

    The encouraged/discouraged list plus the supplements could have been compiled by me, exactly my experience ;) I still hope though one day to be able to pick up semi-regular kickboxing again, still a ways to go.
  4. Esther12

    Esther12 Senior Member

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    It's a tricky one, and I think we could all be different.

    Currently, I'm focusing on core muscle strength using pilates. Seems okayish so far, but not led to significant improvements yet. I've been trying to build more little things in to my day, like trying to stay standing up whenever I'm not too tired; really little walks around the house, stuff like that. I could tell you more attempts at improving with exercise that have gone wrong than gone well though.
  5. Wonko

    Wonko Senior Member

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    I disagree Gavman.

    Stretching, soft martial arts, yoga etc. all cause me significant issues, even walking. A few minutes light stretching will cause me to be dretched in sweat, in significant pain and lead to PEM (or PENE). I used to believe in walking as a light exercise but over did it a few years ago and still have very limited stamina even during good times, during not so good times I do the zombie shuffle after the first fifty yards, pushing it even further I end up in full on zombie mode.

    So what do I do for exercise? When I'm mild to mild/moderate I lift heavy weights, not HEAVY weights but more than my own bodyweight. It's easier and less painful than walking, I need to do it for much less time for the same benefit, and assuming I'm sensible I dont tend to get PEM'd (or sweat). Of course, being a man with a plan, I'm not always sensible, but thats my own fault.

    You are right about the anger thing tho, very bad idea (took me several months to figure out that one).
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I am doing pilates with a reformer (which makes it less aerobic). I like yoga but am also hypermobile so the stretching makes things worse. Focusing on core strength seems a better plan for me. A class once a week is all I can handle, but I am getting much stronger muscles and that helps with general living.

    Sushi
  7. Esther12

    Esther12 Senior Member

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    Yeah - the stuff I'm doing is adapted for connective tissue disorders. Pleased to hear it's started to help you. I'm planning to stick with it for a while yet, so I'll see how it goes.
  8. k-AUS

    k-AUS

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    I recently found out the hard way that cycling on a stationary bike is NOT working for me. I made sure my HR didnt exceed 130Bpm and gradually increased my time from 6mins to 20 mins over about 3 weeks...then crashed. As always I have over done it. I agree with some of you that pilates style exercises seem to work well.

    This is what works for me:
    *light resistance training using Therabands (those elasticated tubes). A physio gave me a program!
    *walking at a moderate pace 1-2km several times a week
    *doing house chores (10-15mins) with rests in between.

    I found yoga too hard as i could not keep my arms out to the side for any length of time...or do the balances. Static or slow moving exercises cause problems for me.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    When i was exercising the only thing i could really manage without crashing too often was weight training, not like arnie either. I could still train heavy but kept repetitions very low, even just 1 rep and rest before doing another, making sure i didnt get out of breath. I would only do between 1-3 exercises but it was enough to help maintain most of my strength i built up pre cfs, work outs lasted maybe 30 mins at most, but alot of time was spent sitting on the bench recovering between sets. Pure anaerobic (phosophate system not the lactate system as in sprints) exercise i think is all we can really manage. phosophate system is intense exercise lasting less then 10 seconds like lifting a heavy weight once. Aerobic stuff like walking made me crash alot quicker. In the end u have to find what works for you.

    cheers!!!
  10. taniaaust1

    taniaaust1 Senior Member

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    Tai Chi can be quite bad for many with ME due to the POTS as with Tai Chi one is doing only a small amount of moving while up on ones feet. For myself due to that, actually running for up to 40 seconds and then walking for a couple of minutes till heart rate is back down then running for some more seconds (never allowing heart rate to get too high, never pushing ones body).. I can cope with better with that then Tai Chi.

    I have the same issue with yoga if its done standing due to my POTS (also have issues with strength yoga exercises which make the heart rate go up eg balancing ones body on the hands). I did yoga for many years and had to give up the yoga I used to do when I got ME. (just simple yoga floor stretches rather then strength building yoga exercises thou I could do).
  11. madietodd

    madietodd Senior Member

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    How do you all do Pilates??? Just watching the video makes me exhausted.

    I was able to do very light weight, very low rep "workouts" at a gym last winter. I did this for 2-3 months, and never got any stronger. Which was OK - no hurry, right? But then suddenly I didn't feel like doing it any more, and by spring realized I'd been on a long, slow slide. I usually feel worse in winter and better by April, so this was a very bad sign.

    I don't crash, I slide. So it takes me a long time to figure out I'm in trouble, and I usually have no idea what started the problem. But in this case, the exercise seems like an obvious candidate. The awful thing is that doing the exercise felt great, and cleared my fuzzy-brain.

    If anybody has ideas about what mechanism would account for this incredibly delayed reaction to exercise, I'd love to hear it!

    Madie
  12. Gavman

    Gavman Senior Member

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    Good to hear the feedback. There are plenty of options.
    I missed one thing, which i think is very important.
    And thats my relationship to pain. As i've managed to be more ok with pain, i can manage more exercise too. When feeling pain and expressing it, while stretching or easy exercise i have found helpful too.

    ukxmrv, if you cant do it, you cant do it. Gotta stay where we're at sometimes.

    I think tai chi is excellent if one can do it. For me it involves way too much saying hello to pain and patience. Yoga floor stretches are good, Tania.

    I lifted 5 suitcases up three flights of stairs today. Felt my body wanting to give out near the end with my heart pounding. I made sure i had some good protein beforehand so i'd be ok.
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Madie,

    If you watched the usual pilates video, it is definitely a "no way!"

    For me, I need to use the reformer and other machines which are very ergonomic, "weight-assisted" machines. As they are very expensive, gyms don't usually have them and offer pretty aerobic "mat" pilates--which is too much for me.

    The other key is a teacher who understands something about this condition or at least believes and respects what you tell him/her about the type of limitations you have. This brings up the finances of it all, as this could often mean starting with private classes which aren't cheap.

    Because I have been doing it for a few years with a teacher who herself had a form of dysautonomia and who gave me freedom to pace myself, do less reps, etc. I have built up enough muscles to keep up with a regular class now--though my present teacher does also give me freedom to pace myself and do fewer reps.

    The pluses for me are both preventing muscle atrophy and strengthening the muscles that compensate (to a degree) for hypermobile, unstable joints and ligaments. Without pilates I get into a lot of back, neck, etc. pain. At periods when I didn't do pilates I needed to go to a chiro weekly just to deal with the pain from misalignment.

    So the financial strain of pilates classes is cancelled by not having to go to a chiro all the time. Also, having EDs III, I have degenerated cervical disks and really need to build muscles there to compensate.

    I do need to "lie low" on the day after a class to rest and watch my heart rate during the class, but for me the benefits are worth it. The complication of hypermobility almost makes exercise a necessity for me.

    Best,
    Sushi
  14. Esther12

    Esther12 Senior Member

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    re pilates:

    I'm currently only doing three little exercises, 10 reps of each. In total, it probably only takes about 2 minutes. I've started off low, and am building up really slowly. I only do it every other day, and sometimes not even then. I've not just bought a pilates video! This is a programme designed for gradual rehabilitation.

    I've been doing more standing up/walks around the house. I've found this much more useful than trying to do 'real' exercise, like walking around the block. It means I can rest as soon as I feel tired out, and recover much more easily.

    I think I might have a tendency to push myself more than I realised (I'm generally thought of as pretty lazy), and this was really worsened by the way GET was promoted at a CFS centre. I'm only just reaching the point of having truly rejected the things they told me there, and I think that's allowing a more sensible approach to activity/exercise to emerge.
  15. k-AUS

    k-AUS

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    Madie
    I like the term "slide" as opposed to "crash" because that describes exactly what happens to me. I start an exercise regime, feel great, then that sucks me into increasing reps, time ect...then slowly the downward spiral begins (not one or two days later). I find it frustrating because I can never work out whether my symptoms are related to PENE or if I have in fact caught a virus. No good taking my temperatures as I never seem to get one anymore! I agree, that gradual slide is a tricky thing in terms of working out what has caused it.

    Esther
    Your type of program sounds similar to mine. Mine was devised by a physio and occupational therapist at a rehab centre. I found their approach to be excellent. As my background has been heavily involved in sports, they knew I had a personality type that "overdid exercise". Their mantra was..."whatever you think you can do, halve it, then halve that again. That is your baseline". I find if I stick to that I'm okay. It is only when I get too enthusiastic that I run into problems.

    An occupational therapist also told me to factor in house chores as part of my exercise program. She counted that as "real exercise". It is a shamee that your health professionals have not been able to help you manage your ME better. That is most certainly reflective of their lack of knowledge in the area of ME - nothing to do with you. You are not lazy. It sounds like you are being sensible, taking the "sensible approach".
  16. Wonko

    Wonko Senior Member

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    It is a problem, I cope with it with scheduled (and unscheduled) rest periods (anything from a week to a couple of months) as soon as I notice it. That and I'm now doing a lot less than I used to, these days I do a total of 10-25 minutes a week (split between 2-4 sessions), 3 weeks on, 1 week off, which so far is much more sustainable e.g. no 3 month breaks this time round.

    Recovery is the key, if your going down hill then your not recovering properly, whether this is down to what your doing, not enough rest, poor diet, or simply that this type of activity is incompatible with ME at this point, needs to be figured out and addressed, as the point of training is to be more healthy, not less. People with ME generally cant take a downward slide in health for long before they reach a tipping point, figuring out whats going on is vital if attempts to improve health (physical or mental - people shouldn't underestimate the psychological benefits of simply being able to do something, anything, that isnt simply about survival) arent to be totally self defeating.

    You have to figure out the physcial and mental cues your body gives you at the start of this slide and watch for them and scale back or stop accordingly.

    edit - deleted
  17. taniaaust1

    taniaaust1 Senior Member

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    Ive found I can slide too at such a slow rate that I may not even notice Im sliding till I realise Im worst then I was in the past. I think this happens when we are overdoing things but just by a wee amount, so just not that noticable at the time.

    Its like all the exercise we do over day by day adds up (with me I often find slow sliding starts to become noticable after a few weeks.. it sometimes takes that long for me to be able to see that the amount Im doing which appeared okay at first, isnt good).
    .............

    I too after exercising for months, daily at a rate I was okay with, really had no more stamina and basically no improvement then when I'd first started which was very very discouraging and proved to me that we certainly have something bad hindering our progress when it comes to being able to get fit or improve.

    Ive come to learn when I dont feel like doing something, it isnt usually due to laziness but cause my body is needing to slow down with things.
    Recently I had a few days where I didnt feel like doing anything so I didnt but didnt realise I wasnt well as normal so was left thinking maybe I was being lazy .. then I came down with sore throat etc so i guess my body knew what was coming and had been just trying to protect itself by my lack of not wanting to do anything.
  18. Esther12

    Esther12 Senior Member

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    I think I really over-did it yesterday lol. My legs are really aching today. Funny to look back at my post and remember typing it as I thought 'Yeah - these little walks about the house aren't taking so much out of me any more.'

    I think that the way GET was being over-promoted on the BBC that day, with Wessely acting like we could get better if only we trusted him, may have sub-consciously led to me pushing myself more than I should have (that, and feeling irate about it all). I still find CFS stuff such a head f*ck. The physio I saw about CFS at an NHS CFS centre was comically bad, just acting like I needed a bit more motivation and claiming that "everyone with CFS fully recovers when they genuinely engage with a Graded exercise programme". I'm pleased to hear that you're having more luck with yours. Getting some real help and guidance with this stuff would be great, but hopefully I'm on a more sensible path - just need to hold back even when I feel like doing a bit more.
  19. Tulip

    Tulip Guest

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    I love power walking but when I get to the stage of being able to do it I find that after doing it for about 3 months, twice a week, my health goes on a downhill slide until i'm house/bedbound. Which is what happened in 2009. I am feeling the calling to power walk again but this time I am going to ignore it because every single time has ended up the same. I have tried pilates and that is even worse. Currently what I do is walk my son to the bus stop in the morning and afternoon (about 400m one return trip) and carry heavy groceries home from the shops once a fortnight (about 600m return) and that's pushing the PENE bigtime.

    Esther12 - I have done that so many times it's not funny! Trying to exercise my way out of it because it's meant to cure us only to crash bigtime (see above). The psychs really fark with our heads like that and it's not fair.
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have been finding the same thing tulip, everytime i exercise even within my capacity, after awhile i end up crashing. I use to be an exercise addict pre cfs, so i find it hard also to resist the urge. Maybe we should start a support group called exercise anonymous, EA. Hi Im bob and IM an exerciseolic, its been 6 months and 3 days since i did my last push up.

    cheers!!!

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