Breathlessness and air hunger in ME/CFS

I've had periods when I feel out of breath from doing very little. So for me it is not PEM related unless I'm in a severe PEM state and have all the other symptoms to go with it.

Over the years breathlessness was caused by several factors, below normal ferritin (5), low magnesium levels that when corrected with mg/taurine injections went away, and viral/immune issues.

The only time a medical person asked me if I felt out of breath a lot was a biochemist who did my consultation for a panel of tests. My OAT in particular showed below normal markers. He did mention that the possible cause could be viral.
 
In the beginning when I was still working out, and still was in good physical shape from before I got ill, I was surprised by how extremely out of breath I got from walking the stairs at my school, along with lactic acid building up very quickly. I still get out of breath like that, and while now it could maybe be explained by not doing much exercise, I don’t think it could be back then. It was a pretty sudden change.

I also struggle to fill my lungs completely, or to expand my ribs. It feels like it’s too fatiguing, so I think I breathe pretty shallowly. Maybe that is part of the breathless feeling for me now.
 
Thanks to everyone who is sharing. It's all interesting to read and it seems so far that these symptoms are a bit different to different people.

Invisible Woman said:
Regarding the yawning and sighing. When I was first diagnosed hyperventilation was all the rage in ME circles. Yawning and sighing was often attributed to that. I'm not convinced about the whole hyperventilating thing but it might suggest that increased yawning or sighing was fairly commonly reported.
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I remember reading a theory about yawning being a brain cooling method. It was about the same time Jarred Younger's theory on a higher temperature in ME brains arrived, so I thought it was interesting. But have no idea if there really is any connection. The yawning spells I had were not painful and far down on the list of bothersome symptoms, but would be nice if there was an explanation.
 
Those of you that get "out of breath", do you mean breathing heavily or something similar? Because I don't get that, and would not explain myself as "being out of breath" during these episodes.

I remember one incident very well, I had crashed some weeks earlier but was back on my feet and biking home from campus. On my way home there is a long uphill climb which I'd done several times a week (even with a mask on that I now struggle to use as I feel I'm not getting enough air) and suddenly I could not get enough air. It was like a switch turned off. It didn't help to slow down, it didn't help to take the pollution mask of, it didn't get better rolling down the slope on the other side and doing as little as possible strenous to get home. But I was not "breathless" as I understand/use the word.
 
I know I brought this subject up a couple of days ago. Others probably also did. I suggested that breathlessness might be more common if we did not recognise early signs and adopt our behaviour to avoid it.

What made me think of this is that I have this year discovered that I can walk up a hill nearby to gain access to some flat walks. I used to be able to manage it only when very well. It is a short 1 in 5 gradient. The way to do it is to reduce speed to such an extent that breathing never becomes laboured, and to finish breathing as I was at the start. A couple of days ago with the assistance of one dog power I overlooked this. After three uphill steps breathing changed, I had to slow to a crawl to recover and then got on OK. The reponse was much too rapid to be normal, and had i continued unchecked would have become seriously out of breath.

I used to go reasonably quickly up mountains.

This is clearly an aspect of our exercise intolerance, but no amount of "conditioning" will cure it.
 
I don’t generally get out of breath but then I don’t do very much! But I DEFINITELY get very breathless when I’m having a bad(worse)patch, getting up the stairs is exhausting and I have to rest several times and literally catch my breath. But it doesn’t necessarily coincide with a raised heart rate - like my heart rate can stay relatively low but my breathing rate can be really high, and vice versa. I normally only take about 8 to 10 breaths a minute when I’m awake (my Garmin VivoStyle watch measures it’s for me). Interestingly, I can’t hold my breath for more than about 10 seconds and I can’t sing much either because I start to feel like I’ve run out of air very quickly. I’d definitely describe it as “air hunger”, that’s a great way to explain it. I was a runner before I got ill so I was good at “breathing” and controlling my breathing patterns, but that all changed almost overnight.

Now I also get this weird (and horrible) thing where I dream I’m being strangled or I’m stuck somewhere and can’t move or I’m being squashed, and when I wake up in a panic, I’m breathing very hard and gasping for air. I can only sleep in one position, on my left side (due to hip arthritis), and I think what happens is that as I relax when I’m asleep, my head slides down off the pillow so my chin ends up resting on my chest and somehow this causes me a kind of positional sleep apnea (as my doctor describes it). I have to sleep with one hand under my chin now to stop this happening as it’s not much fun. I don’t have traditional sleep apnea, but as I do also have POTs my autonomic nervous system is already borked, so I wonder if it’s got something to do with that. It’s very unpleasant, though ☹️. The Garmin watch says my O2 says can get down to 88% during sleep, but I’m not entirely sure how accurate that is.
 
Very slight but constant for me. Never a truly fulfilling breath, but it never feels worrying. I get out of breath quickly but run out of energy before so it basically has little impact. Doing anything above very mild, say scrubbing the floor for 10 seconds, really gets me breathing faster for a few minutes, but it never feels like I'm out of oxygen, just a bit off, never gasping, just breathing more.

I do often, probably dozens of times per day, forcefully exhale whenever I just did something that needed a bit more energy, mostly climbing stairs. So I'm wondering if part of this isn't oxygen in but rather CO out.

So it's very mild, but definitely has been there. I remember when my symptoms presented initially, I used to play drums in a band several evenings per week and in the months before I got really ill I would really struggle to breathe from the exertion and heat. One of the earliest symptom that was very noticeable. I was rather fit at the time so although drumming for hours is demanding, I was able to play higher intensity sports and recuperate fine not long before this started.

During remissions I was able to exercise fine at some points, so this is probabaly not related to some physiological damage.
 
Midnattsol said:
Those of you that get "out of breath", do you mean breathing heavily or something similar? Because I don't get that, and would not explain myself as "being out of breath" during these episodes.
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Good question - no, it doesn't always or necessarily feel like out of breath the way it would because I'd been running too hard when well for example.

When I was a kid I had asthma. Sometimes it happened at school. I would just slide down a wall and sit on the floor, wheezing horribly, unable to speak. I just had to focus on breathing. My best friend would field people who seem to think asking if you're alright is helpful when you can't speak (though it's very well meant). The sensation of not getting air in is more like that but without the prickling in the chest and wheezing.
 
I'd had what I call "air hunger" since my ME started as an acute viral illness. I feel as if I am constantly in a very stuffy room. It's feel like the one time I actually went to a high altitude where other people complained of not feeling "right".

I'm breathing with no problems and able to relax and control breathing but it feels as if there is no air .. in the air. My lungs move slowly in and out with no problems.

In my case it may be related to a family trait. Seen it in extended family. We keep the windows open even in Winter and hate the feeling of restrictive clothing. They didn't have a word for it though until I brought it up.

The first time I heard of "air hunger" as being hyperventilation was on one of the POTS forums. I'm not even sure if we are talking about the same thing. Years ago I was investigated for hyperventilation, hooked up to machine and bloods taken and cleared (as in told I wasn't hyperv). The breathing exercises I was taught there made no difference to the air hunger feeling.

Breathlessness is a new one for me. I had POTS for decades but only some puffing on exertion like climbing stairs. Some of the people on the POTS group have breathlessness at rest. There seems to be a big variation in symptoms and I'm sure it will be the same for ME.

Breathlessness has not been a major feature for me until just before I was diagnosed with cancer. Suddenly I was out of breath walking out into my garden or outside on the flat. Walking up stairs was much worse than it had been before. Being assessed at the Oncologists was the first time I have had my O2 sat levels taken regularly and sometimes my low level surprised them.
 
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chrisb said:
The way to do it is to reduce speed to such an extent that breathing never becomes laboured, and to finish breathing as I was at the start.
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Yep. This is what I find. Don't allow your breathing to become laboured.

On the occasions I manage to join my husband & dog on their walks, if they disappear off up a slope, I just plod, taking my time. How long it takes is determined by my breathing & I don't allow it to become the other way round.
 
chrisb said:
I know I brought this subject up a couple of days ago. Others probably also did. I suggested that breathlessness might be more common if we did not recognise early signs and adopt our behaviour to avoid it.

What made me think of this is that I have this year discovered that I can walk up a hill nearby to gain access to some flat walks. I used to be able to manage it only when very well. It is a short 1 in 5 gradient. The way to do it is to reduce speed to such an extent that breathing never becomes laboured, and to finish breathing as I was at the start. A couple of days ago with the assistance of one dog power I overlooked this. After three uphill steps breathing changed, I had to slow to a crawl to recover and then got on OK. The reponse was much too rapid to be normal, and had i continued unchecked would have become seriously out of breath.

I used to go reasonably quickly up mountains.

This is clearly an aspect of our exercise intolerance, but no amount of "conditioning" will cure it.
Click to expand...
I think the same, no amount of puling help from my dog made any difference to the speed I was able to hold comfortably, if I let him pull me so I walked faster than I was able I would feel miserable, it did not make the walk easier in any way.. (which, on the contrary, it did for my not-that-used-to-hiking friend I sometimes let the dog pull up mountains).

The dog was sold before I got the air hunger symptoms though, breathing never came into it.
 
I can't get my printer to scan atm, so I took pic with my phone but it's too blurry.

The markers in the "Energy Production" panel that are below range are:
Citrate 263 (ref range 400-2000)
Isocitrate 37 (ref range 50-300)
2-Ketoglutarate 1 (ref range 5-80)
Oxaloacetate 337 (ref range 950-2800)

Fumarate is on the border. Most other values are on the low side. I have a low citric-acid cycle:

The citric acid cycle captures the energy stored in the chemical bonds of acetyl CoA (processed glucose) in a step-by-step process, trapping it in the form of high-energy intermediate molecules. The trapped energy from the citric acid cycle is then passed on to oxidative phosphorylation, where it is converted to a usable form of cellular energy, ATP (adenosine triphosphate). We can then use that energy to move, breathe, make our hearts beat, and think (among other things)!
 
i have seen a lot of post on the fibro myalgia site mentioning air hunger it seems to be very common and yet is not frequently mentioned in symptom list . perhaps this is because of the adverse effects of psychologizing of illnesses to benefit vested financial interest . i know when visiting my gp back in the 90 s i would only mention one or two of the most bothersome symptoms (pain and exhaustion ) after a decade of that i stopped expecting any kind of useful help from the british medical profession .
 
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