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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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Article: Lannie at the Pacific Fatigue Lab: Part IV The Report is In - Implementing the Results

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 2, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Cort

    Cort Phoenix Rising Founder

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    A jolt for sure Lannie but tell us your experience with walking....my experience is that I can do it - but that if I get past a certain pace - and its really very low - my muscles start to tighten up. I'm not falling over but I can feel something kick in...and after that I'm in trouble. I wonder what my threshold is - I wouldn't be surprised it was quite low.

    I know someone who's doing this program...its very slow...the amount of 'exercise' is incredibly low but he is increasing the amount he can do over time - so he is pushing out his limits a bit and feels better. I think its a matter of being as fit as you can be within your limits. No one except someone with CFS would call it 'exercise'.
  3. alex3619

    alex3619 Senior Member

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    Hi Cort, I haven't been able to us a lot of PR (anything requiring a password) since the recent upgrade (yesterday?). This includes logging in, but I seem to post to these forums ok. I guess something went wrong. bye, Alex
  4. Cort

    Cort Phoenix Rising Founder

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    After a couple of days on the blink the Front page is, once again, open for business! :D
  5. anciendaze

    anciendaze Senior Member

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    This looks like a minor typo:
    Shouldn't the word be prevent?

    Overall, this report is what the numbers posted before said, based on my experience. Either 30 or 40 watts output at anaerobic threshold is way too low for a normal life. Hitting AT with a heart rate of 87 is a disaster. (My own HR goes to 105 when I stand up.) Unfortunately, many doctors look at the peak numbers, and decide you can function if you just try hard enough. That even Pacific Fatigue Labs didn't follow through to the end of recovery disturbs me; this is the real kicker for me. You were close to being admitted via the ER at the end of test 2.

    I can tell a doctor that getting to an appointment is the only thing I will accomplish that day, or even that week, and it seems to mean nothing. I can tell them it will take me X days to recover from a test. This doesn't appear to mean a damn thing, except "patient shows resistance to treatment" when I am in fact making all appointments and cooperating to the best of my ability. The only time it has made an impression is when I have been hospitalized. Even then, records show miraculous recovery when insurance runs out.

    My next door neighbor has only been there for a few months. She has never heard me talk about my illness, as far as my faulty recall goes. She is already asking "shouldn't you sit down?" when she sees me having trouble. (Part of this is a kind of hypoxia and part negative Romberg sign. You should understand too well.) After shaking hands, she asked if I have problems with circulation. This is not a medical professional, trained to ignore non-specific signs.

    If chronic illness persists long enough, I imagine doctors saying, in effect, "this is perfectly normal, most people your age have been dead for years." When I first reported symptoms, and exhibited the signs my neighbor saw, I got lectures about the emotional stress of adolescence and "growing pains". Living within my bounds has come to mean spending no more than 4 hours/day when I am not lying down. There have been periods when this was reduced to 2 hours.

    A typical physician will report there is absolutely nothing the matter, except my complaints. When I had a dental problem requiring a root canal, they were surprised I had not reported pain. Oh, I felt pain, but that is nothing unusual.

    Much of this testing is aimed at convincing insurers that the patient is not faking. For personal use, these parts can be dispensed with. What I need is a convenient way of determining AT without a laboratory. I use a monitor for HR and O2 sat. My pulmonary circuit is healthy, so the oxygen measured in my fingertips seldom decreases, unless circulation decreases, and I can tell that when fingers turn white. Recovery time gives me an indirect way to tell if I have gone past AT. Does anyone have another way to check during exercise?
  6. Snow Leopard

    Snow Leopard Senior Member

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    Does it feel like the blood vessels in your feet are very swollen when that happens (the feet might look bright red, but not swollen)? Plus the jello leg feeling?
  7. Cort

    Cort Phoenix Rising Founder

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    Thankfully my feet do not change colors :rolleyes::rolleyes: THey don't feel jelloey either - they feel really tight.

    How can you tell what an appropriate heart rate is?. I wore a heart monitor for a a day or so and found that sitting I was in the 80's and a 10 or 15 minute slow walk brought be up to the 110's. I did OK the next day.

    Lannie do you get a muscle burning sensation after too much exercise? Is that lactic acid?
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Great thread, great article Lannie--thanks!

    I am also a frustrated athlete. My mental image of myself is still on a road bike in spandex. I still wear the spandex when I venture out on the bike, but, though onlookers don't know it, I only ride for a few minutes. Still the gear makes me feel good.

    I have been a dedicated HR monitor-user for a long time too (though the short life of Polar batteries is a bummer). I don't know my AT through testing but can guess it through experience--about 90 beats per minute. If I go over this I get PEM.

    Still, I have successfully increased exercise tolerance several times in this illness. I had to stifle all my jock tendencies and do unbelievably small amounts of exercise at first. One summer I started by swimming for 5 minutes--during that 5 minutes I would have to stop between each lap to let my heart rate go down. But, after a long summer (think Florida), I could swim (slowly) for 45 minutes, with my heart rate staying below my perceived AT.

    A number of setbacks interrupted my exercise program, but just for example, in another period I did pilates on a reformer (lying down!). At first I couldn't begin to do the number of reps the others did, but after a couple of years (!) I could keep up without getting PEM. Now I am in a different city and am using a gym on my own. If I keep my heart rate low, I can use weight machines (with low weight) for about 45 minutes without getting PEM. (I worked up to this very slowly) The other day I didn't have much time and did more or less the same workout in a half an hour (meaning my heart rate got higher), and yes I was felled the next day.

    For me the warning signs are chest pressure and the feeling that my "vital force" is all draining down and out my legs. No matter what I am doing--whether exercise or grocery shopping--this is when I need to throw in the towel. I do use a small dose of either clonazepam or diazepam before exercise or whenever I am going to be on my feet for a longish time, and this definitely helps. I also use pressure knee socks.

    I've checked my heart rate during exercise with and without diazepam, and with it, my HR is about 20 beats less doing the same exercise. Somewhere I actually found an article on why that might be--and it has nothing to do with anxiety!

    So we keep at it. My experience is that keeping a certain level of fitness, makes a big difference in overall functioning. We just need to be hyper conservative--no matter what we can do--whether bed exercises or exercise that looks "normal" to others.

    Sushi
  9. helen41

    helen41 Senior Member

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    I don't have symptoms right away when I go over my AT. That's my problem. 24-28 hours later my legs feel like they are on fire and I get charlie horses in my thighs. Staci did say to me that my complaints of burning were due to the lactic acid.
    Since monitoring myself I've been able to reduce the pain, but it is at the cost of doing much of anything.
  10. Molly

    Molly

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    I have been using a pedometer since June. I find that if I walk more that 800-1000 steps a day that I wake up in the morning with pain in my heels and feet along with extreme PEM. This also has downloadable data so I can monitor what events caused me to go over my limits. It also records aerobic steps and walking time. So far, I have yet to get any aerobic data. The graphic do help me to recognize what took me out because I can see hour by hour, weekly, monthly, and yearly results. The hr:hr is helpful because it also checks me out with the length of rest times and when my insomnia finally surrenders! I have no idea how to determine an aerobic threshold to know how to set the limits.

    I would be interested, Lannie, to know how you develop all your remarkable personal results in to an action plan? You are bold for sharing this with us and helping us sort out a lot of missing details from out medical tests. Bravo!

    Maintain balance in all aspects of your life as well!
  11. Cort

    Cort Phoenix Rising Founder

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    You are such an inspiration Sushi....You are doing what I have never done - absurdly small workouts keeping your heart rate low....I'm just blown away that you can expand your endurance if you do that........

    Now you MUST tell, if you remember, why clonazapam helps outside of the anxiety issues. I am not surprised that it could. I think I just read that antidepressants may be working in some people because they anti-oxidant properties and both anti-anxiety and anti-depressant drugs are used in a variety of conditions for a variety of purposes.

    Thanks for the illuminating comment.
  12. Cort

    Cort Phoenix Rising Founder

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    Those muscle burning sensations are my problem as well although when I was able to exercise freely I don't remember anything as remotely painful as what I experience now. This is a whole other level of pain and problem - it really seems different so I wonder if more things are involved. We are in the lactic acid subset I guess.
  13. urbantravels

    urbantravels disjecta membra

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    Perhaps lactic acid + upsurge of the cytokines and chemokines that make us feel pain and fatigue is the magic combo.
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Cort,

    I dug up the reference to diazepam. Don't claim to fully understand it, and -- of course! -- the study was done on rats, but...


    Neuroprotection afforded by diazepam against oxygen/glucose deprivation-induced injury in rat cortical brain slices http://www.sciencedirect.com/scienc...serid=10&md5=1a3928c6ee741c498b4b9514de938eed
    Lorenzo Riccia, Massimo Valotia, Giampietro Sgaraglia and Maria Frosini, a,

    aDipartimento di Scienze Biomediche, Sezione di Farmacologia, Fisiologia e Tossicologia Universit di Siena, viale A. Moro 2, lotto C, 53100 Siena, Ital
    Received 13 September 2006;

    revised 12 December 2006;
    accepted 15 December 2006.
    Available online 19 January 2007.

    Abstract

    The aim of the present investigation was to assess neuroprotection exerted by diazepam (0.125 μM) in rat cortical brain slices subjected to oxygenglucose deprivation and reoxygenation. Neuronal injury and neuroprotection were assessed by measuring the release of glutamate and lactate dehydrogenase and tissue water content. Results demonstrate that diazepam exerted neuroprotective effects according to a U-shaped, hormetic-like, concentration-response curve, with an efficacy window of 0.55 μM concentration. Flumazenil (20 μM) fully antagonised neuroprotection afforded by 5 μM diazepam. In conclusion, the hormetic response of diazepam should be taken into consideration when designing experiments aimed at assessing diazepam neuroprotection against ischemia/reoxygenation injury.

    Keywords: Diazepam; Brain ischemia; Oxygenglucose deprivation; GABA-ergic system; Flumazenil


    For whatever reason, it works for me. If I forget to take it, 5 minutes into exercise and I'm thinking, "whoa! What's wrong here?" My ANS specialist agreed that either diazepam or clonazepam should give you more stamina in a "protective" way.

    Sushi
  15. Cort

    Cort Phoenix Rising Founder

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    Such a clear and easy to understand abstract :rolleyes::rolleyes::rolleyes:

    Thanks alot. Very interesting stuff!
  16. Cort

    Cort Phoenix Rising Founder

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    Molly with regards PEM do you feel pain in your muscles outside of your feet or is it only in your feet? Do your muscles feel painful or are they just weak? For me my muscles hurt but I can certainly move them; that is very physiologically from not being to move them. How is it with you?
  17. anciendaze

    anciendaze Senior Member

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    Here's something I learned to trust, back when I could stand up without going past anaerobic threshold. Keep track of your recovery times for heart rate after exercise. When these are lengthening, you are exercising over threshold. Your own personal target heart rate only applies to you, not everyone. It can even change significantly as your condition changes. If you have a device which measures O2 saturation, and this shows a drop during exercise, pay careful attention to recovery time for this measure also.
  18. Molly

    Molly

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    If I have gone beyond whatever limit I should, I will have my back thighs, ankles and heels throbbing when I go to bed at night. But, when I wake up in the morning my heels are what hurts the most. I sleep on a "Heated" waterbed which helps Immensely! I think I have a delay when waking up in the morning (Sleep Apnea), but for several years I have a type of sleep paralysis affect in the morning for about an hour after I am alert and awake. During that time my heels just throb. My brain is fully engaged, but my legs just don't seem to catch up when I want first thing in the morning. When I am up after that they do not bother me as much during the day unless I am resting. I developed a sensitivity of the weight of the blankets on my toes but I did some adapting, so there is no pressure on my feet when I sleep. Except for that morning pain in my heels, I can not really identify my bone rattling discomfort as "pain". I see it as total numbness, which really affects me head to toe when I am over-extended. Weakness has not really been an issue. I can still ride my Honda 600 Shadow without any problem, and I can physically do just about anything I want during the day. But if I physically am over active, the PME takes over and I wash out for several days without any energy. Since I have been using the pedometer, I have recognized that too many steps are not good. My graph will show, for example, 2500 steps, 0 arobic steps on a day when I may be with family, then the next two days it is down to 40- 600 until I rebound.

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