1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

Heart Rate Monitor is Awesome!

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Sparrow, May 8, 2012.

  1. Sparrow

    Sparrow Senior Member

    Messages:
    671
    Likes:
    770
    Canada
    I know, I know - you all told me so. :Retro smile: I know that people talk about them all the time here. I finally broke down and ordered myself a watch with a chest strap that measures heart rate and beeps when it goes past a rate that I can set. It arrived today, and MAN, I should have got this forever ago!

    I should also probably have demanded a fee from the watch company for raving about their product. :D But it is good. A bit on the large side for a normal watch, but not as super huge as many sports watches seem to be. It looks fine on my girly little wrist. ;) Mine is a Timex Ironman Triathlon watch (http://www.amazon.com/Timex-Ironman..._1_15?ie=UTF8&qid=1336519477&sr=8-15)...which I mention not as a plug for them in particular (though I do like it), but only because I was burnt and it was an effort to find one that I was sure would do what I wanted it to, so maybe it will save somebody else some effort. If you're up to looking around at all, though, I'm certain that there are much cheaper watch and heart monitor strap combos out there that would be perfectly fine for our purposes. Nobody paid me to say this. ...Unfortunately.

    My heart rate went up to 120 just from casually surfing the internet. Now I know why I get so sweaty and flushed and wiped out sometimes from "easy" activities like that. Also definitely jumps dramatically when I stand up (which I knew from isolated testing with my blood pressure cuff, but is neat to see in a more fluid way). It gets higher than I thought, though. Usually when I stand and test it's in the 120's. But walking to the bathroom shot it up further - to 135. Obviously I've never walked around with the BP cuff on.

    Anyway, VERY interesting to see in detail, and hopefully it will be a good tool in helping me back off BEFORE I start getting bad symptoms. Even if I haven't yet had my anaerobic threshold personally tested, I'm pretty sure that 135 is too much. ;) Thanks to everyone who suggested getting one and getting me to finally get around to it.
     
    garcia, taniaaust1 and SickOfSickness like this.
  2. lnester7

    lnester7 Seven

    Messages:
    1,243
    Likes:
    1,121
    USA
    Just A tip that took me a while to figure out, after a while the belt gets smelly. Use baking soda in water to clean.
     
  3. Sparrow

    Sparrow Senior Member

    Messages:
    671
    Likes:
    770
    Canada
    Many thanks from myself, and everyone in close proximity to me. :)
     
    Googsta likes this.
  4. Sallysblooms

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

    Messages:
    1,767
    Likes:
    331
    Southern USA
    I am so glad you got one! They are wonderful.:D
     
  5. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    I loved mine too but it has already stopped working and is only a couple months old! It's a Polar brand. I hope I have the paperwork to check for a warranty. If not, next time I'll try the model you got Sparrow. Glad it's working for you!
     
  6. SOC

    SOC Senior Member

    Messages:
    5,362
    Likes:
    6,423
    USA
    Congratulations, Sparhrow! The Timex Ironman is a nice one. That's the one I would have gone for if I weren't on a super strict budget at the moment. I recently bought the cheaper Omron one which is quite satisfactory, but doesn't have as many useful features.

    Data is great, isn't it? Keeping some records can be surprisingly helpful. I think your HR monitor might have the ability to keep track of total kcal expended during an exercise session. If so, one really helpful thing I did with my former HR monitor was let it record all day for a couple of weeks. That along with notes about what I did helped me figure out what my total daily energy expenditure envelope is. That was amazingly helpful when I needed (or wanted) to do something "extra". I just kept an eye on what my accumulated energy expenditure was for the day, including the extra activity, and then adjusted the rest of my day to stay under my limit. If I got to my limit, I went straight to bed (or more specifically, complete supine rest) for the remainder of the day, but I didn't PEM myself with the extra activity. :D

    Based on the little you've told us, you sound at about the same place I am currently, at least in terms of physical movement, so, if it helps any, my AT is 125 bpm. I don't go up to 120 surfing the net these days, though. :D

    Have you been checked for POTS or low blood volume, yet? You might be able to get your baseline down some with treatment for those conditions (if you have them).

    I've also found it helpful to take enough data to find out what a "normal" HR is for me for common activities, which for me are 1) laying down, 2) sitting in a recliner, 3)sitting upright in a chair, 4) standing, 5) walking slowly around my house. When my HR is running high for any of those activities, I know to be more cautious that day because something just isn't right.

    An interesting thing that Connie, the exercise physiologist at Dr Klimas' office pointed out to me -- my morning HR climbs slowly over the work week, then drops back down by Monday or Tuesday. So even though I work very little, tutoring 2-3 hours a day at home, I'm doing just a bit too much and my baseline HR climbs slowly. Then I rest more on the weekend so that by Mon or Tues my baseline drops and around we go again. :D Finding these patterns can really help manage activity.

    Gosh, I'm babbling on... I'll wind this up before it's completely unmanageable. :D Congratulations and best of luck with your new management tool! I hope you find it as useful as I do.
     
  7. SOC

    SOC Senior Member

    Messages:
    5,362
    Likes:
    6,423
    USA
    I had the same problem with my Polar. I loved it's features, but it ran through battery absurdly quickly, which is bad if you' wear it all day. That and the fact that you have to send it in for battery replacement made me give up on my Polar.
     
  8. Sallysblooms

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

    Messages:
    1,767
    Likes:
    331
    Southern USA
    I have a Heart Smart I think. So cute and works great. When the battery gets low, I take it to a jeweler for a new battery.

    [​IMG]
     
  9. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,875
    Likes:
    1,538
    Florida
    I just have an el cheapo life source wrist type but I love mine too. It's so empowering and re-assuring to
    know why you're suddenly feeling like crap. For 21 years, I had no idea I had pots as well as oi but seeing my hr jump 30 pts after I'd been up ten minutes explained a lot.

    Between this and a blood glucose monitor, I really got a better understanding of my symptoms associated with my me/cfs.

    Tc .. X
     
    taniaaust1 likes this.
  10. Sparrow

    Sparrow Senior Member

    Messages:
    671
    Likes:
    770
    Canada
    Please feel free to babble any time you like. :Retro smile: I find your insights helpful. Thanks to all of you for your input.

    Timex one seems good so far. I'm glad, because to be honest I mostly chose it because it seemed to have the features I was looking for and I was too exhausted to continue looking further to try to find a cheaper one that would do the same things. :D I'll let you all know if it suddenly disappoints me for some reason, but for now it's been good.

    I haven't been officially tested for either POTS or low blood volume. Haven't been well enough to travel to a real specialist yet. I'm certain I have both, though. I have managed to get the volume up some from where it was at my worst, I think (BP has gone back up some, etc.). Just salt, lots of water, and licorice root so far, though. POTS is definitely still a major issue. One day of heart rate monitor has most definitely confirmed what I had figured about that.

    I think I also definitely have days where something is just off with my system and my heart rate is way higher than usual. I wish there was a watch monitor for every bodily function. I'd have no space on my arms, but we'd figure this all out in no time. ;)

    I love anything that gives me some numbers to work with. In a way, it's kind of reassuring to see actual numerical feedback to explain why I'm feeling so different (since we get so little of that). And of course, being able to keep things from going off track too badly would be great. I am also really liking knowing when I'm NOT going too far over. I think that side of things will allow me to make the most of my efforts, cutting back on things that are more taxing than I realized and doing more of the things that are not as big of a strain as I might have thought.

    Of course, I'm learning that I can feel pretty crapped out sometimes without pushing the heart too far also. But I'll take every piece of the puzzle I can get!
     
  11. mobyjoby

    mobyjoby

    Messages:
    60
    Likes:
    14
    I got one this week too. Its been really useful and has shown me that I do get big leaps when I stand up.eg 85 - 129.
    I have also noticed that my heart rate just seems to fluctuate even when lying still . and little things like scratching my knee or hafl turning seem to affect it too. Maybe thats normal though.

    I also noticed that the last few days my resting heart rate lying in bed could get down to 67 or so which seems so much better than a month or so ago (though that was with bp monitor) and was wondering if that is because I have been more proactive in resting more. Then today I went out with my husband and kids for lunch in a cafe and a walk on the seafront and ended up standing around a bit watching them play (although not for long). When we came home I went to bed and stayed there for the next 6 hours - my resting pulse was around 90+ constantly (back up to where it used to be). So it seems that doing more during the day - particularly standing has an affect on HR that lasts quite a while.

    Not sure why I'm saying all this just wondering about the longer term effects of activity/ rest on overall HR and POTS symptoms I guess.
     
  12. Sparrow

    Sparrow Senior Member

    Messages:
    671
    Likes:
    770
    Canada
    Can't comment on "normal", but mine does a lot of jumping around with little movements too - sometimes really high (e.g. from 85 to 110, if I reach for something). I think when I'm feeling particularly wiped it's more...reactive? Along with having a much higher baseline those days, it seems. I was having really bad PEM a couple days ago, and it went up to 156 walking down the hall to bed. Ack! I recognized the "I feel out of breath" feeling, but I never realized how bad it really was when that happens. I figured maybe into the 120's. If nothing else, this purchase will probably have paid for itself just in that wake up call. Hopefully I'll be taking those signs even more seriously from now on.

    It's been interesting - it seems like sometimes it goes way up when I'm overdoing it mentally as well, but not until long after I'm already feeling crappy (which, yes, is longer than I should be pushing it, but you know how it is...). But then after it's way high and way reactive for a long time, until I've recovered.
     
  13. SOC

    SOC Senior Member

    Messages:
    5,362
    Likes:
    6,423
    USA
    mobyjoby -- I think I'm seeing the same thing, in that my resting HR if I rest a lot and higher if I do more. This summer I'll have a chance to do a little experiment -- maybe a week of lots of rest to see if my resting HR will stay low(er). Then maybe a couple of weeks later I'll do a bit more than usual and see if it affects my resting HR.

    Sparrow -- Raising your arms above your heart is a known problem for people with heart conditions, so I suppose it may be that raises heart rate significant. I have the same problem -- I can raise my heart rate above my AT just by reaching up for things or doing much movement with my arms. :(

    When I first got an HR monitor 6-7 years ago, I was astounded how easily I went over my AT. Pretty much anything I did upright and moving (walking 20 ft, unloading dishwasher, making a bed). This was when I was trying to live relatively normally. :eek: I trained myself to do everything less energetically and do A LOT less. It did help a lot with all my symptoms, but at the price of giving up practically all activity.

    Once I'd trained myself, I gave up the HR monitor because it was something of a pain. However, after a some years without it, I needed some retraining, especially since I'm feeling better. I found I've been walking too fast again and my normal schedule (while very, very, very mild without being bedbound) is still a bit too much.

    HR monitor is great for us data-driven types, eh?
     
  14. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Yeah I think I'll buy another one soon. I had mine two months and it's already not working. A waste of money I think. I didn't use it much either, maybe 5-10 times, and only for much of the day.
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,094
    Likes:
    6,064
    Albuquerque
    I liked my Polar too until I had to send it to the factory for a battery replacement. Now I use one that lets you replace the battery yourself.

    Sushi
     
  16. mobyjoby

    mobyjoby

    Messages:
    60
    Likes:
    14
    Sparrow - reactive seems like a perfect description. Mine jumps around like that too with seemingly small things. Although it has never as far as I know reached 150+ just walking along the hallway. That must feel rotten. It goes over 140 sometimes when I go upstairs even at a fairly relaxed pace.

    SOC I am definitely starting to think that more activity leads to increase in resting heart rate - mine is still up today though 87+ rather than 90+. I wonder if it coincides with PEM.

    I also wonder if it makes a difference to ability to sleep. I usually find it hardest to sleep when I have done more and easier on the days when I have rested. I thought it would be the other way round but it seems not. Maybe the raised resting heart rate means its harder to sleep?

    Did you have your AT tested or did you use a formula? According to the most simple formula mine is 107. I sometimes get that while sitting and definitely walking from one room to another.

    Not sure how to stay below it especially with 2 children at home full time. Still I could probably make a bigger difference by slowing down and putting my feet up more. Shot up to 130 just putting a jumper on today but maybe if I sat down first and then put it on that might help.

    I guess there are lots of these little things - its just not always easy to notice/ think about them.

    My watch is a beurer 45 - seems great so far.

    Jo
     
  17. SOC

    SOC Senior Member

    Messages:
    5,362
    Likes:
    6,423
    USA
    I sometimes have trouble sleeping when I've done more. Oddly, if I then take ibuprofen I sleep much better. Also, I can get over-tired if I stay up for hours after I'm feeling tired. Then it's like my body says, Fine! If you're not going to rest when I set up all the right signals, then I'll turn them off. So there!" If that happens, I have trouble sleeping, too. :rolleyes: I imagine with 2 kids at home you can get over-tired, too.

    I did have my AT found my exercise testing. Once about 6-7 years ago and once a few months ago. It was essentially the same both times. If I use the 60 % of(220-age) formula, I wouldn't be able to sit upright in a chair without setting off the alarm. My AT is more like 74% of (220-age). At that level I can get around the house if I walk climb stairs slowly.

    My best suggestion for managing with 2 kids at home is to sit in a chair any time you would ordinarily stand and sit with your feet up in a recliner when you would ordinarily sit. Sit to dress, shower, cook, etc, etc. Get horizontal as much as feasible to conserve energy for when you need to do more upright activities.

    Good luck with it!
     
  18. Sparrow

    Sparrow Senior Member

    Messages:
    671
    Likes:
    770
    Canada
    I would love to get exercise testing done, but I don't think I'm well enough to handle it at all yet. ...To be honest, I'm probably not well enough to handle just getting there. ...Or making the phone call to set up the appointment. :eek:

    I have the feeling I'm still at that stage where the blanket answer to all things is "lie the heck down." Closely followed by "Stop doing that." ...Applied to pretty much anything I might actually want to do. ;)
     
    Valentijn likes this.
  19. SOC

    SOC Senior Member

    Messages:
    5,362
    Likes:
    6,423
    USA
    .

    Do you have to travel alone, or do you have someone to travel with you? I can't walk much more than 100ft without going over my AT, but I can travel by air with a helper and a wheelchair. I usually reserve a bulkhead row seat so I can put my feet up on the wall if I need to when we're in the air. :redface: I do not get out of the wheelchair in the airport except to go into the bathroom. If I conserve energy at every possible point, I do okay -- no PENE.

    The exercise testing at Drs Klimas/Rey's office is super, super easy. Seriously. Ya know how when your bike is in the wrong gear (remember back then?) and the pedals are just flopping around without you really pushing? It's like that. Very minimal effort. Less than just walking for me.

    I did the usual exercise test 6-7 years ago and it completely wiped me out. I nearly passed out when I got off the bike, had an exercise-induced asthma attack, and suffered serious PENE afterwards. So I know whereof I speak when I say the Klimas/Rey one is easy. And the AT measurement was the same for both tests, so effectively the same info with a lot less effort.

    That said, if one is doing the test for disability purposes, it might be necessary to do the maximal effort test. :skull:

    Well, yeah, if you want to be all low tech and stuff and like totally last decade, dude. ;)
     
  20. Sparrow

    Sparrow Senior Member

    Messages:
    671
    Likes:
    770
    Canada
    My husband would go with me, but even still. I'm at the point now where if he drives me to a medical appointment and it's more than half an hour each way, that tends to be enough to seriously crash me, even if I keep my legs up on the dashboard or propped on pillows or sit cross legged, and lean the seat back as far as it will go. I have to think that an airplane ride would be similar. ...Heck, just the drive to the airport would already do me in. :( We try short outings now and then (I have a wheelchair that reclines, and my legs stick straight out, and that helps), but I tend to start to get light-headed and overstimulated even with his help and the reclined position, usually within about half an hour. Just too fragile still, I think. My natural state right now is still fully bed bound, even on my best days, with the exception of walks down the hall to the bathroom. I can't yet care for myself at all, aside from feeding myself food that's put in front of me.

    It's a frustrating catch 22. No knowledgeable doctor and little relevant testing means less help with recovery, but so far the consequences of even minor travel have been strong enough and lasting enough to be scary. I'll get there eventually - am going slowly upward with what we've been able to do ourselves, and we've made arrangements for some of the tests that we can do from here. I've learned as much as I can on my own. It just may take me a little longer before I can get farther away without doing more harm than good.
     

See more popular forum discussions.

Share This Page