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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Starting the countdown

Discussion in 'General Treatment' started by SOC, Jun 11, 2013.

  1. alex3619

    alex3619 Senior Member

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    Panting is a really good sign you are over your AT. However it does not happen until you have been over your AT for a while and you have incurred a substantive oxygen debt. The ideal is to stop before you get that far. This is a hardwired physiological response, and so I think its fairly reliable. However as I said you have to stop before you get that far. Once you start panting, breathing heavily or have distressed breathing the damage has started.
    merylg, SOC and Valentijn like this.
  2. SOC

    SOC Moderator and Senior Member

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    Day 3 post-overdoing
    Hmmm..... today's a little iffy. Woke up without energy today. Not exhausted, just not energetic. I have some muscle aches and stiffness -- more the ME/CFS kind than the more-exercise-than-usual kind. All of this is mild. Although it's not enough to change how I'll live my day (so far), it's noticeable.

    Other interesting phenomena:
    Per Dr Rey's and Dr Sol's recommendation, I take my BP and HR readings every morning. Because I have low blood volume, I have to rehydrate first thing in the morning, take my calcium channel blocker and wait 30-45 mins before I can get stable readings.

    Oddly, my morning systolic BP has been alternating between ~102 and ~117 for the past 6 days -- since I've been more active. There's no correlation I can see between the previous day's activity, just one day it's 102, the next day 117, and the following it's 102 again. o_O

    My morning diastolic BP has been increasing slowly since I've been more active, but today it's as low as it has been in months -- 69 mm Hg.

    My morning HR, which is what we're trying to control with the calcium channel blocker, has remained relatively steady around 77 bpm. However, today my morning HR was irregular -- bouncing around between 69 and 86 bpm. That's not unusual if I try to take it as soon as I wake up and get upright (the low blood volume thing), but not after 45 mins + rehydration + meds.

    It certainly looks like the extra activity is making BP and HR behave differently than previously, which I guess would not be surprising. I'm not too crazy about the arrhythmia, though. The PEM symptoms are very mild so far.

    We'll see how the rest of the day goes.
  3. SOC

    SOC Moderator and Senior Member

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    So, yesterday I took it pretty easy, not feeling quite up to snuff. I took an afternoon nap (which I hadn't done in a while) because I felt tired (not exhausted). [NB: I would like to point out that my two recent college grads also took naps yesterday afternoon. ;)]

    I also went to bed a couple hours earlier than I had been doing recently because (again) I was tired. But could I sleep? NO! My insomnia has been under control with meds for years now, but last night -- tired as I was -- I could not sleep even with the same meds that have worked for years. Maybe this is a bit of the tired but wired I've heard about here, but don't remember ever experiencing before.

    After 6 miserable hours of tired wakefulness, I finally decided to take some ibuprofen because with my high pain threshold, I don't always recognize pain that my body seems to be reacting to (if that makes any sense). Finally, I fell asleep and slept 6 hours.

    Day 4 post-overdoing
    Today I'm still a little tired -- not a big deal compared to ME-style exhaustion. The muscle aches are a little worse, but again, not a big deal. I will try an analgesic shortly. Serious ME body aches don't respond to OTC pain meds (in my case, at least).

    Systolic BP is still doing it's alternate day bouncing up and down (What IS that about? o_O). My diastolic is back in my normal range at 77 mmHg.

    My morning resting HR is up, although not a lot -- about 8 bpm. The most noticeable thing is it's irregularity. Again, not a big deal, but a change.

    Another possible effect is a return of my chronic bronchitis symptoms -- again, not severely. I've had to use my inhaler several times in the past couple of days although I haven't used it in weeks and then only after a respiratory illness. Perhaps this is an inflammation issue...?

    All told, I wouldn't call this a crash or PENE experience in comparison to other times. I have no flu-like symptoms, I don't feel "sick". I'm tired, but very far from the ME exhaustion I experienced in the past. I have some muscle pain, but again, it's very mild compared to my previous experience.

    I'll wait until the end of the day to draw a firm conclusion, but I'm thinking this is a moderate success. More thoughts on this later.
  4. SOC

    SOC Moderator and Senior Member

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    Evening of 4th day post-overdoing:
    I'm a little stiff and a little tired -- nothing I'd call PEM with any degree of confidence. I'd say this experiment is a qualified success. :D

    Now I need to start doing more and more to see where my limit is. I'm definitely out of shape and I'm not sure we've got the POTS treatment completely worked out, so I'm not up to anything like normal activity levels, but now I'm comfortable trying to do a lot more.

    Stage 1 of the research accomplished, Stages 2 and 3 yet to come.

    This is really amazing, but I don't think I've actually wrapped my head around the idea that I might finally be in remission. I should be jumping up and down and shouting from the rooftops at even the possibility of achieving a normal life again, but it just hasn't sunk in yet. :)
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  5. adreno

    adreno 3% neanderthal

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    So, if I were to lift weights, this would cause me to exceed my AT, as this is anaerobic? For me personally, sustained aerobic activity at moderate levels seems to be worse than short periods of high level anaerobic activity. In other words, I can usually lift weights, but running/cycling/swimming kills me. Lifting weights does result in PEM the following day, though. Sustained aerobic activity results in a more immediate crash.

    Is there any way of mitigating the damage caused by exercise? Is this due to heightened inflammation? ROS? Mitochondrial damage? I'm thinking anti-inflammatories, anti-oxidants (eg turmeric, resveratrol) and mitochondrial support (Q10, carnitine etc).
  6. alex3619

    alex3619 Senior Member

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    Hi adreno, weights if used carefully, and particularly if used in interval training with low reps, will not create a sustained energy demand over the AT. Short term energy needs are actually met by a different energy system which is also anaerobic - stored energy. Anaerobic energy production in sustained high demand aerobic activity is an emergency pathway, and puts a lot of stress on the body. However high intensity weight training will also cross this threshold into emergency energy production.

    I have forgotten a lot of this though - I used to know it backwards and forwards and inside and out, now I struggle to remember.

    So you are correct in saying that sustained aerobic capacity is more of a problem, though to be fair its sustained aerobic capacity over the AT that is more of a problem.

    Alex.
  7. SOC

    SOC Moderator and Senior Member

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    As it was explained to me, a laywoman, PWME have a very narrow aerobic range. We can do very short (under 2 mins?) predominantly anaerobic exercise using ATP/CP pathway. After that, rather than do most of our exercise using aerobic pathways, our bodies rush through that and go rapidly to the anaerobic glycolysis pathway. That crossover point from aerobic metabolism to glycolysis is the anaerobic threshold (AT).

    Dr Sol, the exercise physiologist at Dr Klimas' office tries to help us train our bodies use more of the ATP/CP pathway so that we have more physical function before we go into glycolysis. It's done through very short (under 2 min) exercises with longish rest periods to recover the stored energy for the ATP/CP pathway. (I'm getting a little fuzzy here since this is not my field.)

    Weights with few reps with rests between should work for us. I'd have to go look at my notes to be sure, but my exercise prescription is something like 1 minute of muscle strengthening (not aerobic) exercise with 5 minutes of lying flat rest. I can do that several times in one session, so less than 15 mins. I can do that a couple of times a day. It's absolutely maddening to "exercise" like this, but it does help make very slow progress with flexibility and muscle strength.

    This, from Wikipedia (I know, not authoritative, but good enough for this purpose) might help:
    adreno:
    Have you been checked and/or treated for low blood volume, POTS, or NMH? The immediate crash is more likely to be from that than anything PEM-related.
    alex3619 likes this.

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