ME/CFS/fibromyalgia asthma hayfever anxiety snoring sleep apnoea
Not the most catchy title I admit but read on if you have ME/CFS, or a teenager with it, or unexplained anxiety.
If there is one thing worse than having ME/CFS, it is watching your child go through it; their life and education on hold, unable to leave the house, with little support or understanding. If I had found this information earlier, I may have been able to help my son more, I hope it helps you.Continue Reading
Most lists of self-help tips for ME/CFS/SEID will emphasise that acceptance of the disease is important; the patients who accept rather than push and rail against the disease tend to have a better prognosis. Hostile resistance also increases hyperventilation. These patients may be thinking “but I can’t afford to be ill”, or “what am I if I cannot do the work that defines me”, or “I am useless if I cannot support my family” –and judge themselves harshly.
So self- compassion is the order of the day, again something I hear about a lot, but listening to self-compassion expert Kristen Neff’s video I understood it more fully: self-criticism and harsh judgment of ourselves can be considered as part a primitive defence response – a harsh motivator that can help us succeed – but it can activate the fight or flight or sympathetic (threat) part of the autonomic nervous system, releasing stress hormones and contributing no doubt to breathing disorders.
(I wrote a blog post about a link between ME/CFS/SEID and fight or flight or freeze)
So even if harsh self-criticism did not have a role in your disease onset, it may slow down your recovery –it is very hard for someone with such a disease to avoid self-criticism in the presence of such disability and possibly lack of understanding from health care professionals and friends and family who might think that you are malingering rather than sick.
So learning self-compassion can be a step towards switching from “fight or flight” to parasympathetic “relax rest and restore”.
Breathing can be considered to be the bridge between the emotions and the body, and breathing retraining for ME/CFS/SEID also helps calm the sympathetic nervous system and restore a more healthy breathing pattern – where parasympathetic activation is favoured -that can get oxygen more efficiently to all body systems.
Dr Peter Litchfield, a breathing expert notes that “Overbreathing can be a dangerous behaviour immediately triggering and/or exacerbating a wide variety of serious physical and mental symptoms, complaints, and deficits in health and human performance.”
So does overbreathing or hyperventilation play a part in ME/CFS/SEID?
1) Hyperventilation symptoms are very like those of ME/CFS/SEID
“Hyperventilation syndrome (HVS) can show itself in different ways. Most people with HVS will experience some, or many, of the following symptoms:
Respiratory: breathlessness tightness around the chest fast breathing frequent sighing
Tetanic: tingling (e.g. in fingers, arms, mouth) muscle stiffness trembling in hands
Cerebral: dizziness blurred vision faintness headaches
Cardiac: palpitations tachycardia (rapid heart beat)
Temperature: cold hands or feet shivering warm feeling in the head Gastrointestinal: sickness abdominal pain
General: tension anxiety fatigue and lethargy insomnia”
(this information was taken from my local Derbyshire NHS Community Health info on Hyperventilation Syndrome, and it is great that they recognise it).
Any and every system in the body can be affected. Here is a more detailed list, not everyone has the same symptoms, genetics also plays a part.
2) Hyperventilation depletes the tissues of oxygen
a. Low levels of CO2 stop release of oxygen from the blood
Short of breath? Breathe less! Says Dr Myhill, well known CFS expert.
“Many patients, particularly asthma patients, but also CFS patients, have a sensation that they are not getting enough oxygen to their tissues. Their response to this is to breathe more deeply. However blood cannot become more than 100% saturated with oxygen. All that happens is that more carbon dioxide is washed out of the blood. This makes oxygen cling more fiercely to haemoglobin in red blood cells and therefore oxygen delivery to the tissues is made worse! Paradoxically, to improve oxygen supply to the tissues you have to breathe less! Breathing less increases carbon dioxide levels and improves oxygen delivery.”
b) Low levels of CO2 reduce blood flow to the brain
Dr Medows researches orthostasis (feel worse when standing) and ME/CFS “Some of those with ME/CFS and orthostasis (feel worse when standing) also experience very rapid, deep breathing during an orthostatic challenge, like trying to catch your breath after strenuous exercise. This hyperventilation, in turn, leads to reduced carbon dioxide (CO2) levels, or affecting the pH of the body. And, guess what? One of the most powerful modulators of brain blood flow happens to be CO2. The lower the CO2, the lower the cerebral blood flow.”
Dr. Medow’s hypothesis: that the reduced cerebral blood flow and brain fog occurs, at least in part, because of impaired control mechanisms for regulating C02 and/or blood pressure.
3) Learning to breathe less can help ME/CFS/SEID symptoms
Breathing normalization by re-education can help; you can find some success stories here.
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The fight or flight (or freeze) response is useful to deal with an immediate threat or danger, for example to fight or escape from a predator; or perhaps freeze in the case of a baby animal too small to run or fight, wanting to escape the predator’s gaze by keeping still. Fight or flight is when the sympathetic part of the autonomic (automatic or involuntary) nervous system is in charge (rather than the parasympathetic – rest and restore).
The brain becomes aware of danger due to messages received from the senses. Hormones are released and the sympathetic nervous system sends signals to various parts of the body to produce the changes seen below which “turn down” systems not needed immediately and focus on getting blood to the leg muscles for example :
Normally, when the immediate danger or threat has passed, the red alert or threat response should subside, but this does not happen efficiently when hyperventilation becomes chronic. A disordered breathing pattern usually includes chronic hyperventilation, often mouth breathing, and upper chest breathing, with the stomach held in tightly. People frequently have a wide range of symptoms. They are constantly on red alert, even when there is no threat. This condition is sometimes called the “fat folder syndrome” as patients are sent for multiple tests and may have many medical reports in their file. Any system in the body can be affected; nervous, respiratory, immune, circulatory, digestive, musculo-skeletal e.t.c. This adaptation of the body is now not helpful but very unhealthy; it can keep people in pain and discomfort and disability with a very poor quality of life.
A more comprehensive list of symptoms is here.
Breathing is such a basic and fundamental need that it is often overlooked by the medical profession with the assumption that “it takes care of itself”. Luckily it can be corrected, and many symptoms are often dramatically reduced. The symptoms can start to reduce once breathing is improved, becomes more relaxed, calmer, gentler, quieter -allowing the parasympathetic rest and restore to dominate and oxygen reaches the tissues more efficiently.
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It is fascinating to note that before World War 2, the normal minute volume for breathing was 4-6 litres per minute, but this increased to ~12 litres per minute by the 1990’s.
Something has been going on:
Dr Buteyko defined stress as anything that causes you to breathe more than you need to.
A good example is someone I know who sustained a very nasty broken leg in a skiing accident. She had the initial physical stress and pain of the injury to deal with; suboptimal surgery in a non- state -of -the -art foreign hospital, of painful travel home; emotional stresses insurance to sort out, weeks off work, immobility, worry about the future, many, many visits to hospital for X- rays that showed lack of annealing of the fracture; the stress of expecting to see the consultant who could handle the complicated case but seeing junior doctors who gave conflicting advice; further surgery and bone grafts; physical stress of more pain and 6 months of having to sleep on her back to keep the injured leg straight. (You can breathe up to twice as much sleeping on your back as your side).
Not surprisingly her breathing pattern suffered. You get the picture, chronic stress can lead to chronic hyperventilation/disordered breathing pattern.
And what are the symptoms of disordered breathing/hyperventilation? Numerous, including increased pain and panic, which can make you breathe more, depleting your body oxygen and causing a vicious cycle.
A client with ME/CFS described rather well the time leading up to her health collapse as “a decade of crises”- the breathing can slide into abnormality without you noticing, and stay that way as it is eventually accepted as normal. For some, ill health comes out of the blue or “I was fine until I had that cough, then I never really got better” but for many “I just didn’t feel right for several years” with IBS/anxiety e.t.c. creeping up on them.
So physical factors causing stress could include: pain; illness and injury; infection; toxic environment/pollution, and emotional stressors could be: work stresses (indifferent, bullying or inconsistent management); or not having a job; financial worries; toxic relationships; exams; bereavement; new baby e.t.c, e.t.c
Many women in their 40’s may find themselves sandwiched between the demands of teenage offspring and aging parents, also holding down a job, with their own needs being ignored. 
With today’s culture, many people put their job before their health, dosing up on decongestants when they have the flu and soldiering on rather than resting and recuperating.
The work/life balance is a difficult one, I heard someone say she doesn’t have time to look after her health while she is working –it’s OK for retired people! Something badly wrong there….
Luckily a disordered breathing pattern is something that can be put right; surely it is worth it to safeguard your future health, or improve your current health…
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The diaphragm is a large, thin sheet of muscle dividing the thoracic (chest) cavity from the abdominal cavity (belly), and is the major muscle of breathing. As the diaphragm contracts, the lungs move downwards, expand and fill with air. Diaphragmatic breathing, along with breathing through the nose (not the mouth) is essential for healthy breathing. However, as a breathing educator I see many clients –especially those with ME/CFS/fibromyalgia or anxiety who make little or no use of this important muscle! Instead, they often breathe though the mouth, the breathing is obvious in the upper chest, accessory muscles in the upper chest and neck and shoulders do the donkey work of lifting the ribcage, and posture is often slumped.Continue Reading
I consider myself incredibly lucky, not only have I recovered from the debilitating disease (pit/hell) of ME/CFS, but also I now help others recover, by retraining their breathing.
(Plus I live in the beautiful Peak District and can go on lovely walks from my front door. And it is spring!)
Breathing education has been the most rewarding thing I have ever done, and nothing I had ever imagined or expected to do. Poles apart from my previous role in health care where I had been a bench scientist, doing preclinical research into new painkillers for a drug company, and rarely even seeing a patient! I loved the research but the job was high pressure.
Then I was a sick person; at one time I wondered if I would ever be able to do anything useful again.Continue Reading
I was invited to give a presentation on better breathing last week by FibroMacc, Macclesfield’s fibromyalgia (FM) support group.
I read out a long list of symptoms, which the audience recognised as very typical of FM. However they were surprised when I revealed that I was not reading from a review of FM or ME/CFS symptoms, but a review of the symptoms of chronic hyperventilation.
