A Satisfying Breath of Air?

A.  YES!

Deep Breathing Reactions and Feelings of Air Hunger

CFS and/or OI breathing problems are difficult to describe, whether they're chronic, with every breath, as with air hunger, or acute, as with multiple deep breaths.

Air hunger is a term I've heard for the breathing problems we may have, whether we suffer with CFS, FM or the poor circulation / dysautonomia conditions known collectively as OI, orthostatic intolerance. OI arises from a dysfunction, a struggle of the  of autonomic nervous system to maintain adequate blood flow to all needed places when one is in an upright and still position, standing or sitting.

Air hunger is associated with dyspnea....
  dyspnea
  (n. Labored, difficulty breathing; root: dys-Hard, pnea-Breathing).
but his is probably too strong a term, medically, for what I mean by air hunger because dyspnea is more often connected to heart or lung disease, which is  not what most of us have.  Like many CFS/OI symptoms, this breathing thing is chronic and low level won't measure much on standard tests or well push harder for the test and look normal. Regular medical terms do not fit.  Air hunger seems to really fit and describe the sensation of never being satisfied with a breath. We have mild and persistent air hunger.... and just trying to force ourselves to do breathing exercises may go counter to the body's wisdom of adapting the breath to be more shallow for its own survival.

Many patients have this mild air hunger but they use terms for it that are less descriptive and inadequate. Language to describe body sensations is so imprecise! And then there are the cognitive and memory problems on top of that! Words we can't think of, making up words, mixing up words.

Shortness of breath doesn't fit well. Difficult breathing fits, but ours is not dramatic enough for most of us or doctors to notice. It is also not severe enough for pulmonary tests to pick it up since we work harder at breathing normally during tests, then replapse later.  Tests come back normal so we still have a puzzle.  We are sometimes dismissed, told we're fine. "Not able to get a satisfying breath....." is accurate for me, but it's usually misunderstood.  No matter how I try to alter my breathing, I don't feel better; 
I often feel worse and in need of more breath. One thing that is complicates our attempts at exercise is this hard to breathe thing.

Air hunger is an important and common clue that few patients and doctors are paying attention to. I learned about it from a Richmond support group leader in the early 90's  and CFS expert, Paul Cheney, MD, PhD. I began to be able to recognize and understand it somewhat better when I learned about dysautonomia. There are probably other mechanisms involved, but here's how I talk about it at the MVPS/D and the CFS/FM meetings:

It falls more under and provokes people into the rest and digest response of the nervous system... which is generally a good stress reduction technique, but if one has symptoms, is too sensitive to dilating blood vessels and lower or dropping blood pressure side of things, it can bring on and/or maximize the feeling weak and spacey, lightheaded and/or nauseated feelings (the neurally mediated hypotension (NMH) symptoms). (Short shallow gasps can help raise BP again if one feels like they have over relaxed into a bad place.)

Maybe it's related to the lung's blood vessels being too dilated (from heat, some meds - beta blockers do this to me) or too constricted (stress, other meds).  I hate breathing warm air, and I avoid taking stuff out of the oven and stirring things at the stove.  If I use the oven, I make sure other people are around to put stuff in and take it out, or I stop my breathing while the oven door is open. If sun is on my skin and I can feel my breathing getting more difficult, I make this face I call my "heat sickness face" because I don't want to breathe, it's so uncomfortable.  I usually breathe better in a POTS episode, which encourages me to move around, pacing and to overdo.  Then I can get out of breath quickly, huffing and puffing, but I still prefer that to the oven. People thought I was afraid of the oven, had some bad oven memory. Nope,  just don't like being around things that make it hard to breathe. I didn't like sitting close to the camp fires at girl scout camp either and I got dumber every June in school because we didn't have air conditioning and my energy went to surviving in the heat, not math or  reading. Sticking my face in air conditioning vents to constrict my lung blood vessels is still one of my sure ways to pull back to feeling better from an episode.

It's interesting to see both conditions in myself, POTS  + NMH.  Some doctors insist you cannot have both... ... I feel as though I can have both at the same time in different body parts. Tilt tests are usually for finding one or the other, not providing the stimulus to 
provoke both... so they often only find one or the other.

One good way to know if you have a dysautonomia which causes problems in breathing is to answer the question:

How do I handle the breathing part of a medical exam when doctors listen to my lungs?

If we're asked whether we can take one deep breath, or even two, we'll say yes, we can.  We think nothing of the question, and, generally, we don't connect deep breathing to relapses after deep breathing portions of exercise/relaxation classes. Deep breathing is 
supposed to relieve stress and we believe in it enough to do it when asked!  If we're asked about breathing problems, we probably don't give straight answers, or we say no, because we know people with severe breathing problems.  We have so much else to complain about, we don't bother talking about it.

When asked about doctors' tests requiring 3-4 deep breaths for listening to our lungs, how we feel during deep breathing, we tell all kinds of stories: I can't do it as fast as they want; I can't really finish that part; by the 4th one I ask to lie down I get so tired, I bow my head while deeply breathing to keep from feeling sick, etc.  I know all kinds of circulatory chaos has begun from tickling the deep breathing nerves. But patients don't/won't report it because most of them don't know precisely what they're feeling, 
besides feeling terrible.  We're so relieved not to have to take a 5th deep breath, and to move on to the next thing while blood comes back to our brains a little. By then, the doctor is onto 3 or 4 more questions or knee reflexes and the patient is just trying to keep from sounding embarrassingly stupid. I'd bet physicians have to repeat the next thing they say 90% of the time after that lung part  of an exam with us.

Yes, shallow breathing is in self defense which perpetuates our breathing problems, or air hunger, but I haven't found a better accommodation. I've seen so many of us fall into a pattern of shallow breathing for 5-10 minutes, then a single big catch up breath/sigh.  Shallow breathing isn't the source of the problem.

Even when I know I'm beginning to faint in really slow motion (fortunately, I only go about 1/4 of the way toward fainting), I know almost no one is going to understand, even if I describe it well, which, in such a faint, is extremely unlikely. I usually just save my breath and do not try to explain it anymore.

What is important about breathing and CFS is that it is something worth noticing. It can provide you clues to when you are doing well and when you are overdoing. There is likely an emotional/spiritual tie in to feeling a lack of breath as well. I leave that for each to ponder if so desired.

Related topics:

-The exercise physiologists like to talk about CFS and carrying a high oxygen debt and how aerobic exercise and anaerobic exercise are affected in CFS. Staci Stevens did when she addressed our group. She had several helpful suggestions which were also listed in her articles.

-There is plenty of research into high oxidative stress / heavy load of free radicals in CFS. Non-stimulating anti-oxidant supplements are some of the most consistently helpful CFS treatments out there. Use Vitamin C is stimulating, so really listen to your body's reaction to it. It may feel good in the short run, but be wearing you out more over time.

Elly
with Toni
Adapted from a support group meeting summary to CFSupport in 2005.