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short activity makes you feel better in crash?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by sueami, Feb 6, 2015.

  1. sueami

    sueami Senior Member

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    I'm trying to figure out why I feel better when I get up for 5, 10 or 15 minutes and why my resting HR seems to go down after I lie back down. I'm wondering if I would be better off getting up briefly every 20-30 minutes instead of resting 45+ minutes.

    I've been in a crash since Solstice. I've PEMed myself into horrible worse crashes on Jan 2 (by driving to do 45 mins worth of errands) and then two days ago (by doing moderate housework for <10 min at a stretch, once in the am and once in the PM). I am an idiot, I'll just get that out of the way.

    Just got a heart rate monitor and realized my hr is going up to 120 when walking around, so I'm freaking out and resting all the time, except for eating and bathroom breaks and an epsom salt bath this morning to try to get some more magnesium into me. BUt I'm wondering if I shouldn't be doing a certain amount of activity every half hour or so.

    @Sherlock I"m especially curious to hear more about your curing yourself of PEM with short exercise. Anyone else here done that? @Kimsie, do you think 10 minutes of sitting up or slow walking around (keeping HR under 110) would be helpful or harmful while the iron sulfur clusters are coming back online?
     
  2. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Hi and thanks, sueami. Well, as described, very short bursts of exercise, high intensity, measured in repetitions and not in minutes. TONS of rest afterward, like a nap within 2-3 hours and also extra sleep that night. Don't do it again for 2 days - then do it again, but a little harder. That's the best chance, IMO, of creating biochemical changes that lead to better health. Muscle itself can secrete beneficial myokines. You can perhaps add insurance by taking anti-acid, anti-inflammatory and anti-oxidants beforehand.

    But first you'd want to know if that is safe for you to do, because:
    Something similar symptom-wise had happened to me: http://forums.phoenixrising.me/inde...p-now-high-and-cholesterol.35281/#post-552909
     
  3. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    If you have a great sense of physical self-awareness and are intuitively objective, so to speak, then I'd think that should trump all else in guiding you on what to do.
     
  4. sueami

    sueami Senior Member

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    @Sherlock, I don't understand the post you linked me to. Are you saying that you feel you have permanent heart damage, or are you saying that you helped yourself overcome PEM and are now not suffering from exercised induced crashes? That post scared me.
     
  5. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    That heart episode was something independent and not related to exercise or PEM.

    No, I have no permanent heart damage. That resolved itself. Yesterday, I went for a walk and decided to trudge through the snow instead of sticking to the paths for about a hour. It was exhilarating. :)

    Is your pulse irregular? Or only fast?
     
  6. sueami

    sueami Senior Member

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    It is accelerated for the most part. I do sometimes skip beats but that improved with adrenal support and good electrolyte mgmt. Pulse is actually slowing down this afternoon. Some of my racing heart has been anxiety/panic today. It's the first day I've worn a pulse monitor and I didn't realize that I was having racing heart with activity issues until now. I suspect it will improve as I put more days of rest post-PEM under my belt. But I may schedule an appt with my gp next week nonetheless. He's not been helpful thus far, but now that I have a demonstrable abnormal physical reaction, perhaps he will have something useful to suggest.
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    @sueami I am still not familiar with your history (and apologize if you addressed this elsewhere!) but have you seen a cardiologist and done any kind of heart rhythm study (holter monitor or Zio Patch) to make sure your elevated heart rate is all due to inappropriate sinus tachycardia or POTS? I am wondering if a beta blocker (or any medication?) could help you? I am speaking from my own experience and we are all different of course.

    @Sherlock I have to disagree with this (at least in my own case) b/c it would be dangerous due to my cardiac and autonomic issues. I am not disputing if it helped you but for most people with ME/CFS, it could be dangerous.
     
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  8. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Hiya, Gingergrrl. I had already said:

    As to POTS, I had assumed that with >200 posts, sueami would know about POTS and thinks this is different. But I guess you never know.
     
    Last edited: Feb 6, 2015
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  9. sueami

    sueami Senior Member

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    I had an echocardiogram in Sept b/c I was skipping beats. it came back normal. After that, my doc seemed to run out of ideas (he tested for lupus and lyme) and said he could do no more. i am thinking of going back in, now that i can demonstrate elevated heart rate. dont want to crash myself though (further). i will see how i feel monday. hopefully better.
     
    Gingergrrl likes this.
  10. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    I'd think that an EKG is more appropriate, since you'd be looking for heart electrical problems (though if you have usually benign PACs or PVCs, then you'd want an echo to look for structural abnormalities).

    Btw, when I first got sick, I initially went to a heart disease forum, and saw a few others with sudden onset symptoms similar to mine. They had every test imaginable but no diagnosis - except for one who had Bundle Branch Block showing on her EKG. None were told about CFS then (6 years ago).
     
  11. sueami

    sueami Senior Member

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    an ekg 5 years ago found a trigeminy arhythyma or however you spell it. I suppose that's why he went for the echocardio. I think it's time to get back to my doc, just to reduce my anxiety and stress over this.
     
  12. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Okay, that's a type of PVC. AFAIR, that is benign as long as your echo is good. Besides the Mg, have you tried fish oil or something similar?

    That sounds exactly right.
     
  13. Gingergrrl

    Gingergrrl Senior Member

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    @Sherlock I didn't mean to assume anything and was curious if Sueami had a longer heart rhythm study than just an EKG (which only captures that one moment.) Sometimes a doctor will assume you have IST or POTS all due to sinus rhythm and miss something. Not saying this is the case here but just to be careful.

    I agree.

    @sueami I am still not sure, did you do a longer heart rhythm study than just an EKG? Ideally you'd want to capture the tachycardia during that study to make sure it is all sinus tachy. If you can do a Zio Patch study, you can wear the device for a week or more and you press the button when having an episode. This was very helpful for me and it records and captures every incident. I am not sure if all cardiologists use this device but I have done the study three separate times since 2012.
     
  14. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    What is your cardiac problem, @Gingergrrl ? If you don't mind my asking.
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    I don't mind you asking although the answer is complicated! I was first diagnosed with IST about 10 months after I had mono from EBV. I had no cardiac or autonomic issues prior to mono. I was having tachy in my sleep up to 170 bpm. Then I started having POTS episodes during the day. Everything was sinus tachy with no arrythmia.

    Once I got full-blown ME/CFS and my symptoms worsened, I started having shortness of breath with the most minimal exertion and very low blood pressure (even when there was no tachy.) In the worst episodes of shortness of breath, I was getting chest pain and what my cardio thinks are microvascular angina spasms.

    For the last few weeks, I have not had any chest pain or angina spasms although I still get short of breath with exertion. I still have low blood pressure (nothing has changed this yet and tried a few meds) and have tachy any time I try to reduce the beta blocker. I take a very small dose of Atenolol which really helps me.

    My doctors believe it is all autonomic from the ME/CFS and I have no structural heart problem on echocardiogram and no blockage on a CT scan. I am trying to increase blood volume with fluid and electrolytes and have been resting more. I have also been doing magnesium by nebulizer.

    Not sure if any of this is helpful to you or Sueami but am happy to share it in the hopes it will help someone out there (or they will know something else that can help me!)
     
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  16. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    I believe that's rarer than the rare Prinzmetal vasospasms, right? A diagnosis of exclusion, IIRC.

    Btw, have you read up on the possible risk from atenolol? I.e., more CVD death, by a few percent. So some say to take a vasodilating BB like nebivolol instead, but you can't because of hypotension.

    There also is a non-BB med for pure rate control, that was only in Europe, but I forget the name.
     
  17. Gingergrrl

    Gingergrrl Senior Member

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    @Sherlock

    I have no idea if it is rarer than Prinzmetals but I definitely do not have that b/c that one occurs at rest. For me, the only time these spasms occur are with exertion and never at rest. It is a diagnosis of exclusion and no one, even my cardio, is 100% certain that I have it. The autonomic explanation is that I have low blood volume so when I walk or do exertion, not enough blood goes to the small vessels of the heart. We are still hoping if I can lower my viral levels and improve the autonomic stuff, that this entire thing will improve. That is the hope at least.

    I can't take vasodilating stuff and have tried different meds for this. The low dose of Atenolol helps the tachycardia and angina spasms more than anything else and if it lowers my BP, it is only slightly. My cardio and CFS specialist feel it is the right med for me and I agree.

    I suspect you are talking about Ivabradine which is not available in the U.S. (no idea why!) I am not at the point of ordering things on-line without a prescription and preparing to try Valcyte again and don't want any other med changes right now that can confound my symptoms.
     
  18. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Time for me to shut down, good luck to you Gingergrrl and sueami.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    I totally understand and time for me to take a break, too! I know I tend to type a lot but always hoping it will help someone else or myself figure out what is going on.
     
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  20. Gondwanaland

    Gondwanaland Senior Member

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    @sueami I am curious about how/if the NAD and ribose supplementation influenced your worsening.
     

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