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PEM/delayed fatigue - cardinal symptom?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Sasha, Oct 28, 2010.

  1. OnlyResting

    OnlyResting

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    Hi everyone :)

    Really glad to find some discussion on this subject. I have started using a heart rate monitor in the past few days and am finding it intriguing. I didn't spend all that much on mine (from Amazon) but it has the ECG-accurate chest strap (as someone else said, performance is improved by adding conductive gel). Here are my observations so far:

    My initial excitement at having something so concrete and immediate that I could follow was short-lived as it quickly became apparent that my limits were much narrower than I had ever imagined. I thought I was being ultra-cautious and taking it really easy with rest and avoiding doing anything too exerting. Turns out I was wrong. This led to an initial panic and bleak mood centred around worrying that I was going to have to be bed-bound and laying flat for pretty much my whole day and night. This has now lifted as I have learned how I can avoid huge spikes in heart rate and take rest as soon as I need to. It's early days but I am becoming more and more confident that this will be a huge benefit for me in balancing activity with rest.

    The lady who got me interested in this idea has been using the formula she found on the CFIDS website of 220 minus Age then multiply that total by 0.6. This means that, for me at 37, I have a threshold of 109. I'm finding this to be a good indicator of when I need to get flat or at least sit down. I decided to switch the alarm off as I found it was anxiety-inducing for me. The downside is that I have to keep checking my watch when I'm on my feet but I'm finding that easy enough to maintain.

    Even if I don't end up wearing this forever, I think I am quickly picking up some really great indications of where my limits are and what activities or movements in particular are causing my heart rate to elevate excessively. The caveat I'd like to add is that it requires discipline to not ignore the heart rate and just push through anyway. It's always very temping to 'just finish what I'm doing' but it's counter-productive. So, now I rest halfway up the stairs, avoid bending down or stretching or putting my hands above my head as much as I can. I also have accepted the benefit of peeing sitting down, lol. All this can make daily life tedious and boring so the discipline required shouldn't be under-estimated.

    Finally, my 'mentor' in this gave me a great observation based on her experiences. We are told to eat little and often and this would seem to be backed up by our experiences with the heart rate monitor. Eating a large meal makes it much harder to avoid elevated heart rate on exertion afterwards as so much energy is being put into digestion. So, this may also help my waistline, lol.
  2. Cloud

    Cloud Guest

    OnlyResting: It may be true that my HR goes up at times I'm not even aware of ......learning those boundaries can only be a good thing. Lol, my ex's dad used to give me hell over sitting to pee...but hey, I was too sick to stand long enough to get it done. I've told everyone not to worry if I pass out because I'll come to as soon as I hit the floor...but please...not with my pants down. I knew all about Post Prandial Hypotension....but never considered that a large meal would cause my HR to go up with less exertion....great information. I hope you continue posting your experiences.

    Leela & Wonko: Lol, yep another cardinal symptom feeling weird. I too felt an oddball for having reactions to stretching because I've never heard one other person talk about this. And yea, we have prominent ME/CFS docs recommending stretching for the bed bound. My first thought was lactic acid too....but what's strange is if it's that simple, why don't we hear more about it? Maybe a thread under this topic would bring in some good input?

    Hugss for your post moving recovery Leela.
  3. leela

    leela Slow But Hopeful

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    Only Resting: Wow! Totally helpful post. Thanks for writing it all down.

    And CLoud, thanks for the recovery hugs--I need 'em!
  4. SOC

    SOC Moderator and Senior Member

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    Assuming It's Just Me Being Weird

    Me! Me! I have that symptom, too! *grin*
  5. Cloud

    Cloud Guest

    Oh yea...OnlyResting, that's the formula that gave me the 98 AT: 220 - age x 0.6
  6. OnlyResting

    OnlyResting

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    Hi everyone :)

    Some further observations from my experimentation with a Heart Rate Monitor:

    I'm finding that a lot can be achieved if I break each task into segments. When I say segments, I mean tediously small segments, lol. For example, let's say I wanted to go the bathroom and fetch a warm sweater. Previously, I would just go and do each task one after the other, After all, the bathroom and my wardrobe are on the same floor. Now I divide those tasks into segments.... I go halfway up stairs and notice my heart rate is up to 110 or so. I then rest at that point, letting my heart rate get back down to around 90 or less. I complete the rest of the stairs and head into the bathroom to do the business (remember, always sitting down guys!). My heart rate at the point of sitting down is around 120 as I've had the stair climb AND the practicalities of getting myself into position (I won't paint a picture!).

    Once I'm done I remain seated and wait for my heart rate to get back down, ideally under 80. I then complete another sequence (rising, clothing) and sit down again. I find that my heart is then up at just over 100 so I sit down again. Once it goes down, I do the hand-washing and flushing segment. See how boring this is? lol. Then I'd likely have to sit again and wait until I was back around 80. Then I'd get up and fetch the sweater - then sit - then take it downstairs or to wherever I wanted to be.

    The reason for splitting everything up into these small parts is not just so that I can tick a box and say that I've managed to avoid exceeding my AT for too long. What I have found so far is that it is much easier to bring my heart rate down if I catch it quickly enough. This might have already have been obvious to most of you but I was surprised how easily I could recover from around 110 bpm. If I pushed on and let it rise to around 140 bpm I would find that, relatively, it took longer to normalise. Not just because it had to fall more either. It would stay elevated at that upper figure much longer.

    Another thing I'm noticing is that inefficient movement plays havoc with my heart rate. If I am conscious of my movement and try to make it fluid and efficient I can get away with doing a bit more. So, avoid jerky, sudden movements whenever possible, I'd say. I'm also becoming more aware of non-physical exertion. Laying in bed with the laptop is fine for me. I can read blogs or whatever and mental strain doesn't kick in for a while. What does start to strain me (and raise my heart rate) is talking. We all could have guessed that though. Something less obvious that has the same effect is if I think in certain ways. Imagine the type of thinking where you have an internal monologue going on in your head. Your mind has drifted to making a mental shopping list or remembering a time someone did something good or bad to you. I've found that these types of thoughts exert almost as much as talking does.

    Finally for now, remember that movement of any kind will raise your heart rate. If you consider that sudden jerky movements will have more of an impact you can see why it's important to try to carry out symptom management for muscle spasms or twitches. At their worst I was having about 2 or 3 per minute so you can imagine how much energy I was wasting on pointless movements. For me, magnesium oil is having a wonderful impact on my muscle jerks but others need specific medication to help matters. Whatever works for you though, it's definitely worth it to preserve energy.

    Take care everyone :)
  7. leela

    leela Slow But Hopeful

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    Gosh, thanks for that, OnlyResting. This whole thread is becoming a really useful instruction manual for when I finally purchase my heart monitor!
  8. sparkplug

    sparkplug

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    Only Resting, I'm so excited to have a community of HRM users. Do we have anyone who has been doing it longer than you and I (it's me your ole pal w/ the bagpipes toggling down my st;)?
    Really, GREAT post!!! As I told you on FB it feels as though you have a camera in my head.
    I wonder if you've noticed your heart seems to like sitting in the floor. I can do a few tasks while sitting in the floor, legs crossed, then once I get up the monitor goes off a couple of times but falls bk to 80's fairly rapidly. maybe legs crossed forces the blood to the heart faster.
    Terrible fluffling brain stuff tonight. I had more to add, but....
    tomorrow is another day;)
  9. OnlyResting

    OnlyResting

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    Tomorrow is another day :)

    I can't remember where but I did read something recently from a doc who treated NMH/OI/POTS and he said that patients are quite remarkable in being able to unconciously counteract blood pooling, elevated heart rate or plummeting blood pressure. One of the ways he mentioned was to cross legs so I reckon there is something in your theory!
  10. urbantravels

    urbantravels disjecta membra

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    I think this was mentioned in the CAA webinar on OI, they're called "postural manuevers." Just as simple as moving your legs, etc. It's hard work for the heart to get the blood all the way back up from your legs when you're standing still; any moving/flexion of the muscles in your legs helps pump the blood back up toward the heart. This is true of healthy people to but especially more so for us. (And that's why they STRAP YOU DOWN for a tilt table test so you can't fidget your legs. Eek!) I find that veeeeery slow walking is better than standing still.

    One of the things I've found from my heart rate monitor is that standing and doing anything with my arms is the most common seemingly-benign activity that can push me above my limit very quickly. Standing at a mirror combing my hair, for instance, or washing dishes. My physical therapist says that this is because the arms are so close to the heart. I have now got a tall barstool which I rather awkwardly sit at for washing dishes.

    Since I've been wearing the HRM I too have been "segmentizing" things and slowing things down as much as possible, and it does seem to help. My workaholic type A personality keeps telling me to hurry up and get something finished before I crash, which is sort of like stepping on the gas and the brakes at the same time. Not good for the mechanism. Slowly wafting about doing little pieces of tasks, and trying not to feel hurried/worried about what I'm doing or when I'm going to run out of energy, is so profoundly unlike me that it's a difficult lesson to learn.
  11. Sasha

    Sasha Fine, thank you

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    That's really interesting - I can't stand blowdrying my hair for more than even 20 seconds and I'm not even trying to style it, just blast-dry it any old how. Doing anything with my arms raised is a killer.

    Have you thought about getting a dishwasher? I could live without mine. If you don't have room for a full-sized one you can get small ones that sit on top of a worktop (but you still have to get them plumbed in).
  12. urbantravels

    urbantravels disjecta membra

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    I'm a renter in a very, very small apartment. Theoretically I could get the roll-around kind of dishwasher that you attach to your faucet, but I can't help feeling that I'd pay for the convenience in the exertion of dealing with it. I mainly solve this problem by not washing the dishes :angel: or by doing them a bit at a time. One of the advantages of a very small place - I can sit down to the computer and do a few things, get up and walk a few steps and wash two dishes, lie down and read for a bit, etc., and none of it involves much travel. :wheelchair:
  13. Sasha

    Sasha Fine, thank you

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    Hi urban - that sounds like a good solution!

    I had to be without a dishwasher for a while and my sister suggested that I use paper plates and plastic cutlery - it actually enabled me to survive! Not ideal environmentally of course but we're not living the sort of lives where we can be perfect.
  14. urbantravels

    urbantravels disjecta membra

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  15. sparkplug

    sparkplug

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    urbantravels, great...i thought we needed a new thread about this too. see you there;)
  16. OnlyResting

    OnlyResting

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    Hey urbantravels :) Thanks for clarifying the postural manuevers - glad it wasn't something I dreamed up :p

    Your observations are really interesting. It's great to be able to build some anecdotal evidence of what people are learning using the HRM.
  17. sparkle_zzirf

    sparkle_zzirf

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    Sparkplug Said to Only Resting, I'm so excited to have a community of HRM users. Do we have anyone who has been doing it longer than you and I (it's me your ole pal w/ the bagpipes toggling down my st;)?
    Really, GREAT post!!! As I told you on FB it feels as though you have a camera in my head.
    I wonder if you've noticed your heart seems to like sitting in the floor. I can do a few tasks while sitting in the floor, legs crossed, then once I get up the monitor goes off a couple of times but falls bk to 80's fairly rapidly. maybe legs crossed forces the blood to the heart faster.
    Terrible fluffling brain stuff tonight. I had more to add, but....
    tomorrow is another day;)


    I just wanted to affirm the same strange behavior that I have been doing for years - but it has meant that I can stay sitting upright at my computer desk for a lot, lot longer. I use office chairs but I remove the arm rests so that I have room to sit cross-legged. My way of compensating which I have been doing out of habit. I wish they made a portable variety so I could take one when visiting. It is a pity I am getting worse osteo in the hip because this can stretch it painfully but if I want to sit, this is the only way I can for lengthy periods. I actually hate "normal" chairs. And I can keep my heart rate below the formula AT doing this (unless there is the added burden of a virus or something warring with my immune system).

    I have just requested membership on the HRM facebook group page as Judy because I will buy a monitor when I can. In the meantime I am using a blood pressure machine intermittently.

    Lovely to meet you all :)
  18. OnlyResting

    OnlyResting

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    I've added you to the group Judy - look forward to hearing more from you :)
  19. alex3619

    alex3619 Senior Member

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    Hi urban travels, you sound like me! I cook the same way too, and have finally worked out a system of cooking most dishes in bits and pieces (but I keep forgetting to add important ingredients :confused:). It takes an hour longer, but most of that is resting. I clean my flat the same way - one little bit at a time. Bye, Alex

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