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Waiting To Exhale: Breathing and ME/CFS

Discussion in 'Alternative Therapies' started by Cort, Jul 24, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    I think the idea of the breath in ME/CFS is just so interesting. I swiped the below thread from ExperimentalCFSYahoogroup. It's by Blake Graham - a nutritionist/healer (I think he is) who often posts there.

    My experience in ME/CFS is that whenever I hit a trigger (almost constantly at times!) I stop exhaling and hold my breath and then breathe in short spurts. This is apparently what happens when you're in a stressful situation. Think of it - something shoots out of the dark when you're walking - what do you do? you hold your breath and direct all your senses to the possible danger that's approaching. THis is a situation I think I am often (without realizing it) in.

    This is not a healthy state of being. Blake offers his take on the Breathing situation in ME/CFS; as someone who's researched this disease alot he thinks its important and he's found some breathing methods that may help. Excerpts of his article are found below. (I'm going to have section on Breathing up on the website in the near future.)


    http://www.nutritional-healing.com.au/content/articles-content.php?heading=CFS%20-%20Breathing


    [/QUOTE]
     
    metalnun likes this.
  2. Jody

    Jody Senior Member

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    Can't remember where I read this, about 2 yrs ago.

    Some doctor's book or website I believe. Anyway, they said they'd seen a lot of people with cfs, and most of us don't breathe. :D

    Not properly. Not regularly. Not deeply. And we hold our breath alot with out realizing it.

    Now, he (or she?) went on to say that most people don't breathe right. But we are really bad. And if we could retrain ourselves to breathe properly it would make a noticeable difference in our health.

    Checked myself out after that and found he was right, in my case. My breathing is terrible. Shallow when I'm not aware of it. The breath holding -- not holding exactly, more like, I don't know, forgetting to take in that next breath for awhile .... I try to be aware of this more, and try to correct it when I am aware.
     
  3. Cort

    Cort Phoenix Rising Founder

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    Absolutely we are terrible breathers (at least I am). Dr. Lapp had a physical therapist check out his ME/CFS patients. He found that they tended to have shrunken chests, tightened upper bodies and exhibited shallow breathing -which reinforces the stress response. He recommended that they do breathing and stretching exercises to loosen themselves up.

    I recently did some abdominal breathing exercises and got a little activity going where I rarely get some, if you know what I mean :D

    I think it all has to do with the autonomic nervous system somehow.

    Dr. Valling is high on breathing exercises in ME/CFS as well.
     
  4. Jody

    Jody Senior Member

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    Congratulations, I see you have a smile on your (emoticon) face. :)
     
  5. Cort

    Cort Phoenix Rising Founder

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    That experience always brings a big smile:D
     
  6. Jody

    Jody Senior Member

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    Well then I hope it happens again. :)
     
  7. tag

    tag Guest

    [/QUOTE]

    Cort,

    I found your statement, "My experience in ME/CFS is that whenever I hit a trigger I stop exhaling and hold my breath and then breathe in short spurts" to be sort of interesting.

    Within the last year, I went through sleep studies which revealed that I have obstructive sleep apnea. Prior to this, I never knew much about it. I've had severe sleep problems for 30 years, but no doctor ever suggested that I might need to be checked for apnea. Anyway, recently, I ended up with a Cpap machine, which I used for 6 nights. I already had several problems which contributed to shortness of breath, but the Cpap made it so much worse that I quit. When my Doc first suggested that I might have apnea, I read quite a bit about sleep disorders and told him BEFORE the study, that I was sure I had a Central Sleep Apnea problem.

    One of the Central Sleep Disorders that captured my attention is the Cheyne Stokes Disorder. Normally, people have these episodes when they are asleep, hence, are unaware that they're having them. The weird thing is that, I have had something like the Cheyne Stokes problem in the daytime too, when I'm awake (your description of your problem is very similar to what I'm talking about). Most of the time, I am not aware, (I've had people point it out to me though) but occasionally, I am aware.


    My study did not reveal any Central Sleep Disorder, but, the literature clearly states that these issues may not show up during a one night sleep study (a sleep study is usually only one night long - insurance won't pay for more as a rule) hence, can be very difficult to diagnose and that if one has a Central Sleep Disorder, Cpap will make them worse.

    Anway, I ditched the Cpap, bought a Vpap (which makes Central Sleep Disorders better) and have done much better - I can usually get 6 hours sleep before waking up and don't have nearly as many episodes during the night.

    If you are not familiar with Cheyne Stokes, go to a few of the websites devoted to sleep disorders to read about it. I would like to know if you think that there is any similarity between Cheyne Stokes and what you are experiencing....I think it describes perfectly some of my episodes during my wakeful hours....even though I think it is really odd since it should only happen during sleep. My doctor has, more or less, dismissed these episodes that occur while I'm awake.

    It just occurred to me, while I was writing this, that my family has a history of somnambulism - sleep walking. I have two brothers, both of which have a history - one has a VERY STRONG history - he can do things like drive cars, etc. while asleep (he can't do it very well - ran headlong into a tree). I have no history of somnambulism, but with somnambulism, wakeful states and sleep states become confused.

    With all the neurological problems that we, undoubtedly, endure, I guess anything is possible. I know that my body is really screwed up and that I react totally opposite to what one would expect under certain circumstances.

    TAG
     
  8. Jody

    Jody Senior Member

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    Tag,

    I have sleep walkers in my family too. One brother when he was little used to wander around the house in his sleep. Our mother said we shouldn't wake him because that was supposed to bad for him (forget why) but maybe follow him, make sure he didn't hurt himself. I found it entertaining. :D

    He'd do things like put a cereal bowl on his head and stand on the backporch. One time he sat in front of the TV, very early morning, and "watched" it though it wasn't on and he wasn't awake. Usually he'd eventually wander back to bed, still asleep.

    One brother used to have nightmares and cry in his sleep and you couldn't wake him no matter how hard you tried. He also used to talk in his sleep.

    One of my daughters walked in her sleep when she was small. We had to keep the basement door locked with a lock above her reach so she couldn't then fall down the stairs in her sleep. And a few of my kids talk in their sleep.

    I have heard it rumoured from my husband Al that I have been known to talk in my sleep as well ... :)

    Terrible about your brother. That is some dangerous stuff.
     
  9. tag

    tag Guest

    Sleepwalking

    Jody,

    I don't know how somnambulism fits into the overall scope of things that we are going through, but, it is probably related. At least you only "talk" in your sleep ...... or, so far as you know.... when you're asleep you can't tell exactly what you're doing. I can tell you that this disorder gets much worse when one is under stress. So, take care when you're stressed out, and warn your family members who have this.

    My brother (at about age 8 to 10 yrs) used to get up in the middle of the night and leave the house. He apparently was trying to get to the baseball field - he was in little league. He was caught, many times, outside with his baseball bat, no clothes or shoes except for underwear, levis and underwear OVER the levis.

    When he was 20 years old, he joined the Navy. He didn't want to do this, but this was during the Vietnam era and he knew that he would be drafted into the army if he didn't join the Navy first. He had dropped out of college and recently married just before joining up. He was sent to San Diego for boot camp - or whatever they call it in the Navy. He was very stressed because he did not want to be there. His somnambulism had seemed to improve in recent years, with no major episodes for years. His experience in the Navy changed all that. He was wandering all over the place at night. At first they thought that he was malingering to get out of the Navy. They put him in "the Nut House" - his words, not mine - and tied him to the bed at night while watching him on a TV screen. They did this for 2 to 3 weeks. He was always able to untie himself and begin his wandering. Once, he came home on leave during this period. It was in December, snow on the ground, etc. This is when he got out the door unnoticed - again with only underwear and levis (no unerwear over the levis though) and drove a car into a tree. Someone heard the crash about 2:00 A.M. and found him lying in the snow with the car door open - car smashed, etc. The Navy finally realized that he was not malingering and that he was never going to be able to serve on a ship, so he was medically discharged. His somnambulism improved just from the reduction in stress.

    Imagine how tired people are who wander around all night and don't know that they are doing it.

    I wish you and your family the best.

    TAG
     
  10. Cort

    Cort Phoenix Rising Founder

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    my God - what a story.

    I really suspect that there may be some sort of damage to the respiratory centers in ME/CFS. Nothing extremely overt for the most part but something that disrupts normal breathing patterns. I don't think anyone would ever notice that I had an odd breathing pattern - it's only after watching kind of closely that I discovered that I do. In particular I seem to hold my breath quite a bit and to breathe shallowly which does seem similar to Cheynes-Stokes. Very interesting.

    I certainly notice it when I walk; my breathing starts out relatively slowly but fairly quickly I can feel the tension in my muscles ramp up; at some point the tension gets resolved some extent and my breathing slows again and then process starts again and it cycles through this process.
     
  11. Jody

    Jody Senior Member

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    Tag

    Your brother should be pretty worn out from what you described. :)

    How are you doing with your Vpap?

    I have a friend who briefly thought he might have cfs. Did some type of sleep tests and found he had sleep apnea. He uses a Cpap, says he just uses it for a short time in the early part of the night and it seems to be enough for him. He says his wife doesn't mind it (my first concern :)) she likes the noise it makes. It apparently helps her go to sleep.:D

    Interesting contraptions.
     
  12. Jody

    Jody Senior Member

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    Cort,

    maybe damage to the respiratory centers, or maybe back to the old sympathetic nervous system again being hypersensitive or hypervigilant? Fight or flight triggered by things that shouldn't trigger it?
     
  13. nkm

    nkm

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    I am a bit confused about the whole breathing thing in CFS/ME. Is it that the sufferer holds the breath AFTER exhaling or is it that they feel "smothered" or "choking" feelings while TAKING a breath?
     
  14. HopingSince88

    HopingSince88 Senior Member

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    nkm-thanks for bringing this thread up again. I had not read it before.

    I hold my breath at the end of exhalation. I can wait a good 20-30 seconds or more before breathing in again. I notice I do this when I am trying to concentrate on something due to cognitive issues. Somehow keeping my breath still makes it easier for me to think. I am going to try some of these breathing exercises to see if I can make some improvements.
     
  15. Sing

    Sing Senior Member

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    A KEY TOPIC!

    Breathing better is something to work on. Of course I don't remember much of the time but am trying, so hopefully my habits will improve.

    I started noticing this as a serious problem in 2000 when I moved and did way too much too fast. My breathing went into that uncontrollable stress pattern of short, gulping breaths. After that, I became aware of this pattern which became more often the norm as I continued to try to close the gap between what I'm able to do and "normal".

    My hypothesis is that the problem originates in the brain, a slowed-down brain and low-functioning HPA axis, perhaps. Whatever manages breathing in the brain isn't working well, so that the breathing pattern is no longer coordinated with what is needed.

    It only makes sense that now the conscious functions have to take over and try to re-direct the traffic, to change the pattern!

    A Physical Therapist recently had me attend to my diaphragm to let it move and do all the work. She said this is far more efficient than chest breathing. I am supposed to relax my upper body and chest completely, not collapsing into bad posture, however. So I try to extend my body gracefully upwards while utterly relaxing my shoulders and rib muscles, just letting the diaphragm extend out as a pump. She thinks this may also help my digestion improve.

    More reasons to work on changing dysfunctional breathing: This uncoordinated, stressed pattern seems to stop digestion, resulting in an increase of gas. Food doesn't digest and nutrients aren't delivered to the blood in a smooth and timely way.

    Then too, the old pattern of breathing which involves scrunching my shoulders and using the upper chest muscles causes contraction and strain in all those muscles. Their tightening then makes it even harder to breathe. So, I need to stretch out and deeply massage those tight muscles. I do this in floor movements overall, only going up on my knees for a few upper body stretches. (I could go into this in more detail if anyone wants to know my methods.)

    This is definitely a current topic for me. Breathing poorly or well, has many gross and subtle aspects to it, for the better or worse, and it seems very worthwhile to try to change these habits. Maybe, someday there will be a pill to motivate the brain centers to work well, but in the meantime we can become yogic breathers--possibly with some interesting benefits!

    Sing
     
  16. dannybex

    dannybex Senior Member

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    Thanks for bumping this thread Sing. I'm definitely a breath-holder, especially as stress increases...a vicious cycle as others have mentioned.

    I saw this story on this link more than a year ago and still haven't tried this, but here's a woman who claims she had ME/CFS since 1991, tried many different types of medicine/therapies, but recovered using something called 'Transformational Breathing'.

    She explains how to do it on her site, so I guess it's basically free advice...?

    http://mosmilestones.blogspot.com/2006/11/so-what-is-transformational-breathing.html

    d.
     
  17. Dreambirdie

    Dreambirdie work in progress

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    The usual reason that I tend to breathe shallow is to avoid feeling my symptoms. It's an unconscious, automatic response, that I have to be vigilantly aware of. There seems to be an initial releif that comes with shallow breathing, but it doesn't last. And it certainly doesn't serve me in the long term. When the lack of full breathing catches up with me, it makes all my symptoms WORSE, not better.

    I have a Yoga breathwork DVD I try to use regularly to help me instill better breathing habits. There's a set of breathing exercises focused on the exhalation, which is very helpful in my case.
    http://www.walmart.com/ip/11038717?sourceid=1500000000000003260390&ci_src=14110944&ci_sku=11038717
     
  18. srmny

    srmny

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    I started using a computer biofeedback program called the Wild Divine about a years ago. It comes with a usb biofeedback device that measures your heart rate and skin temperature while you play a game that has multiple breathing exercises. It is basically biofeedback and you control the game ( The journey to the Wild Divine) by breathing exercises. It has new age music and beautiful graphics as you explore the land of the Wild Divine.

    I have mastered the first game and am now working on the advanced version called the Wisdom Quest. My stress level is very well controlled when playing the game or even now when I am not even playing the game. I used to jump 5 feet if anyone came up behind me. I think it was the result of 3 bad car wrecks in 18 months and a screwed up endocrine system. I have been meaning to post about this for some time now but have hesitated because even though I have finished one level of the game (an objective rating of my "meditation" ability), I still questioned if I was just caught up in the hope of improvement of my autonomic nervous system.

    Before I started using the Wild Divine if I even listened to my breathing I would start to hyperventilate. I had a blow to my stomach years ago that had me hyperventilating for more than a year. I used tranquilizers during that time until I got control of it on my own. I have known that I needed to learn to control my breathing but did not seem to have the self discipline to use traditional meditation. But I could commit to play a computer game 4 or 5 times a week!

    Yesterday I saw a new doctor. I have gone through 6 internists in 6 years looking for just one that won't argue the existence of ME/CFS! My pain doctor sent me to a new one that she said liked "complex" cases. He did not deny, confirm or argue the existence of the disease but seemed very interested in discussing my illness, my health history, and my parents, grandparents and siblings health history. I spent an hour taking tests and giving blood and about 30 minutes or more talking to the doctor. Our discussion was transcribed by a nurse and in 3 weeks I go back to discuss what he learned from me, my blood and one other test.

    The other test I took was 15 minutes long and was given by a nurse using a computer program. It is called the ANX 3.0 by ANSR Medical. It measures your heart rate and BP as you "relax" and the nurse periodically talks you though some breathing exercises. He looked at the test quickly and commented that he had never seen the heart rate and BP follow each other in nearly identicle patterns. I told him that as soon as the nurse said relax I automatically started meditating. Apparently the test recorded it. He asked me if I liked to read medical info and printed out the test results and the full report that explained the test results and the test itself.

    The only portion of the test that I did poorly on was the last 3 minutes of the test where you stand in place. Since I did not break out in a cold sweat and felt only slightly light headed I thought I had passed it too. I generally don't feel like I am going to sit down or fall down until around 5 minutes. Yesterday was also the first day out of bed after 2 week crash. The report says that during the "stand response" my heart rate was supposed to increase by >10% but instead it dropped initially and then increased <10%. And while standing the BP cuff failed to get a reading. I am going to print out one of Dr. Bell's reports on OI and take it to my next visit. I would like to take a test where I have to stand for 5 or 10 minutes.

    I am hopeful that I have found an ally. He did not know about the potential connection of XMRV and CFS but seemed eager to learn. This is a first for me. I live in Georgia. Turns out he is from Maryland!
     
  19. richvank

    richvank Senior Member

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    Hypothesis for breathing interruption abnormality in CFS

    Hi, all.

    I'd like to describe my hypothesis for the breathing interruption that many PWCs report. This is part of the overall GD--MCB hypothesis for CFS.

    Normally, our breathing rate and depth is automatically controlled by the respiratory center in the brain stem. The respiratory center controls our breathing based on observing the pH and carbon dioxide content of the blood it is receiving arterially. It does not base the routine control of breathing on the oxygen content of this blood, because if it controls the breathing based on the CO2 and pH, the oxygen supply to the cells will normally be taken care of properly. However, it does have an emergency trip level for oxygen, so that if it goes too low, it will promote gasping in order to raise the oxygen level as fast as possible.

    O.K., so the idea is that the respiratory center adjusts the rate and depth of breathing (the so-called "minute volume" to keep the carbon dioxide level within a normal control range. The faster and deeper that we exhale, the more CO2 we pull out of the blood. It's important not to let the CO2 level get too low, as occurs in a person for example who has asthma and hyperventilates. That's what the paper bag treatment is used for, to get the CO2 level back up. It's also important not to let it get too high, because that will lower the pH of the blood too much, and it will also mean that the oxygen level in the blood will be going too low.

    Now, what happens to this control mechanism in CFS? Well, there is mitochondrial dysfunction. That's well established. In my hypothesis, it's due to glutathione depletion and the partial methylation cycle block. Others have other views about the cause of it, but I think there is now good evidence that the mitochondria are dysfunctional.

    One result of this is that they do not produce carbon dioxide from oxidation of food as rapidly as normal. The result of this is that the CO2 content of the blood tends to be lower than normal.
    In response, the respiratory center lowers the rate and depth of breathing. That's basically it. Sometimes it completely stops the breathing because the CO2 level is so low. If this happens while the person is sleeping, the oxygen level may eventually hit the trip point, and they will wake up with a gasp.

    There's good evidence in the literature for low carbon dioxide in the gas that is exhaled by PWCs. I think there are at least four studies showing this hypocapnia. However, in all these studies, the authors did not consider mitochondrial dysfunction. They just assumed that the rate of CO2 production was normal, so they attributed the hypocapnia to hyperventilation, which is the standard medical explanation for hypocapnia. However, none of them actually measured the ventilation rate. There is another study in which the ventilation rate was measured in PWCs, and it did not find hyperventilation. So I think this fits together.

    Dr. Cheney likes to put a pulse oximeter on his patients and have them hold their breath as long as they can. He finds that their % oxygen saturation does not drop as rapidly as it does in normal, healthy people. This is evidence for lower utilization of oxygen by the cells, and it also corresponds to mitochondrial dysfunction, because most of the oxygen we utilize serves as a terminal electron acceptor for the mitochondria, and is converted to water.

    I'd be interested to know if this hypothesis seems to fit people here. There seems to be a variety of breathing abnormalities that have been reported in this thread. Maybe some of them match this hypothesis.

    Best regards,

    Rich
     
  20. BEG

    BEG Senior Member

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    Whatever the scientific reason is that we are shallow breathers and breath holders, two specialists have given me sound advice. Staci Stevens: "A few times a day, take 3 deep breaths. Don't do it all the time; just a few times a day."

    Second, practice belly breathing daily. Lying down, place your hands on your abdomen. When you inhale, your abdomen should rise, and then fall upon exhale. So simple, relaxing, and so helpful for the moderately severe patient.
     

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