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ME/CFS and Beating the Clock
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? Exercise for disabled PWCs with OI and PEM

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by xchocoholic, Nov 6, 2010.

  1. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I have looked a lot online. I can't find one that only has heart rate. Not even in med. supply places online.

    I also read that you need the strap. I was thinking about getting a new one with no chest strap, but now I won't. The straps are good. I will keep the one I have. Very reliable.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I got a simple Polar at Walmart that just shows HR--trouble with Polar as you are supposed to send it back to the factory for the battery changes.

    Sushi
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  4. xchocoholic

    xchocoholic Senior Member

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    Hi again,

    I finally got some new batteries in my HR / BP monitor. It's just a wrist one by Life source but seems accurate enough for now anyways.

    So far exercising is going well. I added in some 2 1/2 lb leg weights and some wrist weights because it was too easy without any weight and I was hoping to decrease the time I'm spending by adding in some weights. It's hard to see if my PEM is related to running errands (being upright and over extending myself) or if it's going to happen just by exerting myself because I have to get out to get groceries, etc ...

    I was playing with my HR/BP monitor today and my HR went from 101 when I'd been pushing myself for 5 minutes and down to 96 after another 5 minutes. I was totally winded and mouth breathing by then. 101 is the highest that I saw my HR get but this is the first day I've played with this. And this was while laying down too. It took me about 20 minutes of laying still to catch my breath and stop shaking.

    I did some googling and if I'm not mistaken this is due to my left bundle branch block ... I was kicked off of the real stress test when I tried it a few years ago and now they only do the chemical one. I was too sick at the time to even ask what happened ... All I remember is my vision getting fuzzy and having to lay down to stop myself from shaking.

    anyone else doing this ? I swear ... whatever truck ran over me in 1990 did a thorough job ... x
  5. Sasha

    Sasha Fine, thank you

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    What model is it, x? I know people are saying that they're inaccurate relative to the chest strap ones but my chest strap one was so uncomfortable I gave up using it. I'm thinking I can benchmark a wrist one using a finger pulse oximeter (which I've already got) to get an idea of how much error it has and in which direction (e.g. if underrates or overrates HR and by how many BPM).
  6. xchocoholic

    xchocoholic Senior Member

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    Hi Sasha,

    It has UB328 in the bottom right hand corner. I've had this for about 4 years now so I'm not sure if you can buy this now. I got it when I was re-diagnosed with OI so that I could see how my symptoms matched up to my BP. I can't remember ever doubting what this one said so it seems to work ok .. tc ... x
  7. Sasha

    Sasha Fine, thank you

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    Thanks, x - luckily it's still going and is called the Life Source UB-328 and is here on US Amazon, and here on UK Amazon, $60 and 32, respectively.

    Don't forget that if you're buying from Amazon you can benefit Phoenix Rising by buying via the PR Amazon shop including from the UK; or benefit ME Research UK by going to their homepage and clicking the Amazon link - it gives them a cut of what you spend.

    That will be a big help - I really don't like the chest strap monitors!
  8. helen41

    helen41 Senior Member

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    Do I read the link correctly, that you have to pump it up to get a reading?
    I've been wearing my monitor for a week or so again- it's not ideal but so interesting. My threshold is at 113, and I notice my baseline seems to be about 20 BPM lower in the morning, compared to the afternoon. I need to watch a bit longer, but I hope if I restrict activities to the mornings, I might be more successful in avoiding consequences
  9. Sasha

    Sasha Fine, thank you

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    Good question - it doesn't look like one you wear all the time and get a beep if you go over a certain HR. I didn't read the description very carefully (overexcitment!).

    That's interesting your baseline is lower in the morning. I usually feel worse in the morning so perhaps mine will be too.
  10. Sing

    Sing Senior Member

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    I am just getting back to this thread after a long absence. It feels really good to have your personal reply, x.

    If a certain quantity of salt does the trick, that is best. I eat a lot of salt, both sea salt and the iodized variety, but this won't raise my bp from their lows. The next line of attack was Fludrocortisone, which made my body hold onto salt and fluids much more, but the just seemed to stay pooled in my lower body. That is why I went to Midodrine. The real problem seems to be my heart not pumping the blood up to the top, but whether this originates in the nervous system control, I don't know yet.

    As for the passive floor techniques for massage, this is a matter of lying on something very firm which can hone in on the tightest (most painful) parts of the muscles. You are supposed to hold it for at least 6 seconds, but it could be a lot longer, then release slowly and move onto adjacent spots. You can buy rounded wooden rollers (thick sticks) for this purpose or sometimes find them in the woods--weathered pieces from old logging operations. MA Roller and The Stick are two brands one can buy, but there are probably others.

    Then there are the thick, very firm foam rollers. These are long, maybe 8 or 9 inches in diameter? And you can put them under your back and roll slowly up, etc. When you buy these, they come with a sheet of floor massage movements for the major muscle groups. These big foam rollers release muscle contractions and also provide for a lot of lymph drainage.

    I find that using them in the evening helps me get a better night's sleep.

    Well, you know what--I feel like a Confederate soldier today, fighting a rear guard action, but am trying to be disciplined about it anyway.

    Sing
  11. xchocoholic

    xchocoholic Senior Member

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    Hi All,

    I'm feeling a little guilty for not getting back to this until now but I'm sure you understand. What with the holidays and all ...

    Just wanted to update this real quick tonight. I'm still exercising regularly. I've improved strengthwise and can do more now than I could. Sit ups are even EASY now ... lol ... and I'm using 3 and 1/2 lbs weights on my ankles. I still have to do most of these laying down, go slow and take regular breaks.

    Everything where muscles are involved has become easier for me. I notice it most when I'm walking though. I have a pep to my step that wasn't there before.

    I started PT about 2 weeks ago because I've been in several car accidents over the years and my exercises were making my back and shoulders hurt more. This is going really well. My physical therapist is having me do a lot of exercises on machines I that I couldn't do at home.

    JSYK, I still have OI and PEM ... BUT, I'm pretty sure that one of the exercises I'm doing helps my OI because I seem to be thinking more clearly when I'm out running errands. It's the one where you lay on your back and raise your legs up slightly and hold it. FWIW ... I couldn't do this one at all when I had ataxia and now I can do it for a count of 10 ... I "think" it's the strain it puts on my whole spine all at one time.

    Life is good and busy ... hope everyone is feeling better ... tc ... Marcia

    PS. This would not have been possible before starting ADB12 in July 2010. That's when my muscles started feeling stronger and when my PEM was reduced to 1 day of couchtime instead of 3 days. I don't even have a PEM day where I feel like a zombie anymore. : ) ... Of course, like Freddd says, you need to have other co-factors in place for the ADB12 to work. ( BTW .. I stopped the MB12 because it began to interfere with my sleep)
  12. xchocoholic

    xchocoholic Senior Member

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    Hi ALL,

    Update time once again ... :hug:

    Up front, I want to let you know that exercising hasn't helped my CFS or my orthostatic intolerance. If anything, it put me in a state of chronic low grade PEM.

    I stopped PT yesterday because of the extra time it took for me to get there and do my exercises. I'm severely disabled so my little bit of up time is too important to spend driving back and forth to PT. I plan on continuing my exercising at home but at a lesser pace.

    My conclusion from all this exercise is that while I can build muscles and endurance, my progress is VERY slow but steady. For example, I went from struggling to lift 1 lb arms weights when I started PT to easily lifting 2 lbs within a few weeks. I can do 25 sit ups in a row now and when I started I couldn't do any. Um, no abs of steel here though ... :D Most of my weights were increased or doubled while in PT.

    BUT ... If I'm tired from PEM, weak from a blood draw, getting over an illness such as food poisoning or severe allergies, etc, my strength and endurance were reduced.

    Not as much as I thought it would be .. Meaning, I felt weaker than I actually was. For example, Those 2 lb arm weights that I was lifting with ease, weren't so easy anymore but as long as I rested between reps, I could still lift them. And the simulated running on a pilates type machine that I was having fun with was impossible. My whole regime had to be cut back in time too ...

    So, if I'm understanding this correctly, the muscle strength was reduced but still there ... AND my endurance / aka recovery time was significantly lessened ...

    BTW. I've had the tendency to get winded easily (SOB) ever since coming down with CFS in 1990. Prior to coming down with CFS, I did aerobics 3 times a week ...

    I completely failed the Pacific Labs type bike test in 1992. And to date, I can't possibly run or do a treadmill stress test.

    Based on what I saw while exercising, my doctors and I are now looking at why I get winded so easily. It could be my left bundle branch block but I also just found out that I have scarring on one of my lungs. FWIW .. IMHO, unless I get tested with a Pacific Labs bike test again, they won't figure out what's going on ...

    TC ... xchocoholic
  13. Esther12

    Esther12 Senior Member

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    Ta xxchocoholic. Good to get an update.
  14. kerrilyn

    kerrilyn Senior Member

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    xchocoholic, I've been following your updates because it sounds like we've been going along the same path. I started Adb12 last summer too and it's made a remarkable difference to me for increased energy, less PEM, clearer thinking and much less pain. I started taking folapro and MethylB12 along with the Adb12 a few months ago. I've had a reaction (flush with burning/itch) to the MethylB12 and cut back on the dosage. My sleep has been doing well too and I think that is a major key.

    I've not tried to really exercise, but I can do much more activities like cleaning the house and errands and not have to nap/rest. I've gone to the pool and need to take it easier the next day but not full fledge PEM (sick in bed, like used to happen at least). I went to yoga last night, with lots of stretching, and I'm not in agony today - that's nice. I still have POTS/OI I noticed that when I wore my HR monitor at yoga last night and sat down when I needed to. I don't think I would try to lift weights yet, I'm not that strong.

    So, after all that rambling, my question is do you think you are still doing well from a daily activity standpoint? Have you been pushing yourself too much too quickly with weights/exercise specifically? I know because I've been feeling better, I've been trying not to do that, but it's difficult to not just jump in and live again.

    Thanks for the update.
  15. xchocoholic

    xchocoholic Senior Member

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    Hi Ester,

    Happy to keep you all updated on this. These message boards have been a dream come true when it comes to learning about our illness ... tc ... xx ; )
  16. xchocoholic

    xchocoholic Senior Member

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    Hi Kerrilyn,

    It's always nice to have company. I wonder why you had that reaction to MB12 ... Good to hear it's improved by taking a lower dose though. And good to hear that you're sleeping well. I found that to be key to healing too ... If I don't get a good nights sleep, I'm just not with it the next day and more likely to feel pain.

    Which MB12 are you using ? I've never had any real success with B12s until I started taking the ADB12 but because it's recommended here, I've been using Enzymatic sublingual MB12 Infusion. At one point, it was interferring with my sleep, but so far so good this time around. I was also getting a toxic reaction to the Solgar P5P but I'm doing better with that one now too. (I hate to even say this, but after my episode of food poisoning I could handle these .... I'm just saying ..... something about my digestive tract improved after that ? )

    That's great that you're enjoying the pool and yoga without getting severe PEM or pain. And like you, mine improved when I started the ADB12 ... thanks Freddd ...

    My orthostatic intolerance starts as soon as I stand up and just gets worse to the point where I HAVE to lay down ... and usually for an hour. So I can't really count on feeling good when doing any housework, grocery shopping, sitting up and watching tv, etc etc ... I have to lay completely flat for my blood to flow properly. So my ability to perform daily activities hasn't improved at all. Granted having muscles makes everything I do easier, but the lack of blood in my upper body, especially my brain, is just too overwhelming.

    I really don't think I pushed myself at all. Basically if my heart started to pound or I got fuzzy headed, I stopped. Took a few minutes for those feelings to subside and then restarted what I was doing or found an exercise that didn't do this. Which is why most of my exercises are done while laying down.

    My theory is that if my body is struggling, there's no need to stress it out any further by exercising ...

    I totally understand the urge to jump right in and live again ... but, IMHO, it's self defeating. Whatever is going on that keeps us from exercising isn't going to go away by stressing out our muscles, hearts, lungs, etc ... only slow gradual exercises, if any, can help us detox and avoid deconditioning ... That's true for anyone though.

    FWIW ... I could not have done this prior to taking the ADB12. My body was just too weak ... I realize that not everyone needs ADB12 or reacts as well as some of us do, but so far, it's made a big difference in how I feel. So since this worked, I've started looking at other bio available nutrients ...

    time to lay down ... Hope you continue to improve ... tc ... x
  17. Wonko

    Wonko Senior Member

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    I'd advise not doing 25 of anything - in general any more than 10-15 repetitions is for building endurance and not strength - endurance work is normally incompatible with M.E.

    From personal experience it's a bad idea to exercise whilst PEM'd.

    It's likely your body can only tolerate (and recover from) a very limited amount of exercise so make it count.

    However if your body either cant recover or your getting PEM'd all the time then change/reduce your exercise until this stops happening - if this means you do nothing then I'd suggest you do nothing for a few months (or until you feel more up to it).
  18. xchocoholic

    xchocoholic Senior Member

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    Hi Wonko,

    I'm confused ... isn't the fact that I went from zero to 25 sit ups proof that I increased my endurance ? The same thing happened on most, all ?, of the exercises that I do. If this is the case, increasing one's endurance is a good thing ? You know ... when I started walking normally again after 16 1/2 years, I had to work on increasing my endurance too. That took some time but it worked too ..

    As far as exercising when we're having PEM, IMHO, it just depends on how bad it is. My PEM now is mild compared to what it was last year so I feel ok while exercising. Actually, it seems to make me feel a little less sluggish if I exercise when I have PEM. I CAN'T do anything aerobic but stretches and a few muscle building exercises are ok.

    Keep in mind that I started out not being able to do any sit ups or leg lifts and very gradually built up my body to where I am now.

    Maybe PT is a better word for what I'm doing ... or what we can do. I certainly wouldn't have considered what I'm doing now as exercise when I was healthy.

    I'm not sure if not doing any exercise due to PEM is a good idea or not. At least not if you've already started an exercise program. In my case, I'm going to get PEM from my daily activities as long as I have orthostatic intolerance because the blood isn't getting to my upper body when I'm upright. And yet, as long as I take it easy and exercise while laying down, I feel stronger because I'm gaining muscle strength ... and I'm getting the added benefit of detoxing my lymphs, those brain chemicals we get from exercising and avoiding deconditioning.

    IMHO, it seems that striking a BALANCE between the benefits one feels from exercising and getting enough rest to avoid crashes seems to be the key here ...

    Interesting discussion ... thanks for the feedback ... x
  19. Wonko

    Wonko Senior Member

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    I do a slightly different form of exercise these days - I lift weights (obviously I dont have significant OI issues most of the time)

    I lift weights because I've tried walking - I've tried gentle exercise - I've tried stretching - I've tried gradually increasing the amount I do - you get the picture - all failed - because of several years of this sort of approach I can, even now, barely walk without pain and am barely mobile most of the time. I find an hours training less demanding, less painful and most of the time less likely to cause PEM than walking 100m to my corner shop and back (100m total journey).

    I used to push through PEM, I used to just keep going until it was impossible, I've kept pushing until I've taken 2 hours to get a couple of hundred yards and another hour to haul myself up the stairs to my flat. In my case pushing on and ignoring PEM simply results in a decrease in ability not an increase - normally a marked decrease.

    In terms of weights trying to lift whilst PEM'd results in a 60% decrease in strength at the same perceived exertion level and a 40% decrease going all out - weights have numbers on - it's easy to tell - but the dangerous bit is that it results in a complete failure of endurance - whilst when not PEM'd I can train for an hour when PEM'd I can lift once, maybe twice and then thats it - the next 2-3 days (sometimes a lot longer) are a total write off.

    PEM should be taken seriously, it's an indication your body cant cope with simply surviving, giving it more to do when it cant cope will not improve strength or fitness - it will decrease them - at least in my experience.

    In 16 months I've gone from being barely able to get off the bed/sofa (or occasionally floor) during a bad patch to being able to function minimially even during a crash - raw strength helps - before a 40% drop in strength was enough to completely incapacitate me, now I'm stronger the same drop isnt.

    However there is no way I will ever be able to do 25 situps without consequences, last time I tried 2 sets of 5 was bad enough to convince me it was a bad idea - and I do have abs of steel (they are currently operating under cover tho lol)

    All I can say is PEM shouldnt be ignored, whilst at low levels most of the time it's possible to exercise it's ultimately fairly pointless as your body isnt in a condition to benefit - a bit like it's possible to do a 10 mile run with a broken ankle - but it wont improve your fitness at all and stands a chance of doing significant injury.

    BTW the reason you can feel better whilst and for a few hours after exercising even PEM'd is because your body produces endorphins in response to exercise - in fact when I first started I used to train at least partially because it actually gave me a few painfree hours - which was a novel experience then. That doesnt mean it's good to exercise PEM'd - it just means your body can be a bit thick at times.

    Anyway, I wish you every sucess with your endevour - but please dont push too hard - even if it feels good lol

    edit - just read your post at the top of this page - more or less any leg or core exercise should help with OI - at least in theory - as functioning muscle should help prevent blood pooling in the legs - pretty sure I've read somewhere that fighter pilots use leg muscle contractions to help conteract blood pooling caused by high G manouvers.
  20. kerrilyn

    kerrilyn Senior Member

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    Wish I knew. It just started suddenly like a niacin type of flush, burning, very itchy skin and red patches. I thought maybe something to do with histamine and oddly, I upped the dose back to where it was the last 2 nights and didn't have reaction. Maybe just a fluke(?) I'm taking the Jarrow brand.

    Before I got on this forum I thought there was only one type of B12, cyanocobalamin.

    How was it interfering specifically? I find the Jarrow B-Right with P5P taken with Folapro makes me sleepy, so I take them right before bed. Last couple nights, since upping the Methyb12 again, I have woken up at 3 am and had some difficult getting back to sleep. Maybe a coincidence or maybe not.

    Are you still taking amino acids too? I'm pretty sure you wrote that you were taking Solgar (unless I'm thinking of someone else).

    I'm lucky because my POTS/OI is variable, worse some days and not too bad others. I don't know the reason for that, I suspect hormonal implications. It is worse on a day that I have pushed myself too much tho. That makes it harder to pace activities at times because I'm clearly different one day to the next. The POTS/OI has been the last hurdle, the pain, PEM and cognitive aspects are greatly improved. Not to say I'm 'normal', but much better than I was.

    I agree exercising should be done laying down. I need to do more of that, but at the moment I'm getting my 'exercise' from doing more daily chores like cooking and cleaning a bit. Thankfully these chores have gotten easier and I attribute the Adb12 primarily for that.

    The pool is nice because I can float, but it is easy to overdo it. The yoga is for people with health problems and last night I did attempt a standing pose for a bit, but the HR monitor let me know 'hey dummy, you are not as healthy as you think you are - sit down now!' LOL

    I don't know how you are doing sit-ups, they make me feel nauseated lifting my head, but I equally want to work on my core.

    I was taught a modification in yoga that has helped me.....I'll try to explain it incase it helps someone else. Sit on the floor, arms at side w/hands on floor for balance and bend legs at knees. The standard exercise is to then lift one leg (or both if you are strong) slightly off the floor and feel abs working. I've always had trouble with this because my low back is not strong and I collapse forward, rounding my back and putting pressure on my low back. I was taught to put a medium sized ball (found at dollar store, not a large exercise ball) on the floor behind right me and lean into the ball. It will add support for the back, but you will still feel the burn. You can also lean on the ball and shift slightly to the left or right and work the obliques.

    This image somewhat shows the stance, but imagine the ball on the floor behind the guy and him leaning on it for support
    http://www.sparkpeople.com/resource/exercises.asp?exercise=455

    I hope you keep improving and keep the forum updated.

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