Breathlessness and air hunger in ME/CFS

sea said:
I don’t think we know what the mechanism is for shortness of breath in PWME. I do know that for me it isn’t related to doing more than my fitness allows because it is too variable day to day. A healthy person’s level of fitness dictates relatively consistently what activity they are able to do before becoming breathless. If it didn’t then exercise tests would have no value.
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I sometimes get shortness of breath while eating and although I am not in a great shape I would submit that I am obviously not in that bad of a shape. Zero to do with deconditioning, even though of course higher exertion brings it up but if it can happen while at rest it's clearly nothing to do with fitness.
 
I ask if this "air hunger" or "breathlessness" or what it is - if it´s not because of muscle weakness, accumulation of lactic acid in muscles or histamin intolerance (breathlessness is one of the symptoms).

I have ME/CFS for 20 years. I went through different stages - now I am stabilised and if I respect my limits I can walk 10 000 meters a day. So in my case it cannot be decondition. Still I often feel air hunger. It was never that bad except the last 2 weeks. I dont know why it happend - I didnt feel exhausted when I walked but I felt breathlessness - I hope it will go soon away.

During my ME/CFS I always felt muscle weakness and accumulation of lactic acid - the muscle weakness often circulates through my body. So maybe breathlessness can appear when the muscles which are responsible for breathing are too exhausted. It would be interesting to know if the patients with muscular distrophy feel the same kind of breathlessness. Or maybe if this breathlessness occur more in ME/CFS patients who have muscle weakness.

It´s strange for me that sometimes when I walk uphill with a friend who is not in a good condition - I see that he is fast out of breath - me I mostly breath slowly if we dont walk too fast and it seems that I manage it much better than him. Still I can feel that I dont get enough air into my lungs. But he can walk like this next 10 hours, me maybe 1 hour. Strange, strange, strange this ME/CFS.
 
Kalliope said:
I'll start off with adding a new word into this; yawning.

In severe periods of my illness I've had frequent, long lasting yawning spells leaving me unable to talk. The yawning was quite extreme, and the sigh that usually accompanies a yawn was more like howling. The yawns were very long, something I was not in control of, and they could go on repeatedly for quite some time.

Once I had one of these "spells" when hospitalised and was able to measure the oxygen levels. They were 100%.

I'm in a better period now and no longer have these yawning spells, but yawning is still a sign of having overdone things.

I've never had the chance to discuss this with an ME clinician, and have always wondered if others experience the same and if this is how the ME symptom "air hunger" is to be understood and if others agree it's different from "breathlessness".
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@Kalliope and @Midnattsol

Early on with ME (gradual onset), I would start yawning several times when starting aerobics classes. I did it every class.

I get out of breath with exertion. I also have asthma. Sometimes my breathlessness feels like air hunger - with mild activity. But that's not often. The breathlessness is most noticeable with more exertion. And, my leg muscles start to really hurt within a few short minutes. Like I've just run a long distance.

This is all very difficult to explain to physicians not well versed on ME.
 
NelliePledge said:
I get out of breath very quickly if I have to walk uphill or stairs. I always put it down to being overweight but I can go a lot further on the level without gasping. I think I’ve always been a shallow breather and was absolutely hopeless at cross country running at school - I had to resort to walking every time. Because I’ve noticed my chest being irritated/tight especially when lying down I’ve thought of trying to get checked out for mild asthma by the GP but I’m a bit reluctant in case I haven’t got it and it gets seen as hypochondria.
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Yes up hill and stairs - out of breath, and very painful leg muscles (lactic acid?) I think most doctors don't know ME includes shortness of breath. This makes things complicated with other diagnoses such as asthma.

Agree, pwME risk being labeled hypochondriacs. That's happened to me a number of times (of course).
 
I wondered if this article might be of interest here. There are some references to exercise, so you have been warned, but it isn't all about exercise:

https://www.painscience.com/articles/respiration-connection.php

Title: The Respiration Connection
Subtitle : How dysfunctional breathing might be a root cause of a variety of common upper body pain problems and injuries

I was taught breathing exercises when I struggled with hyperventilation about 15 years ago. As well as breathing in a shallow fashion, and far too fast, I had also been breathing using my neck and shoulder muscles, and it was very painful and very tiring. Unfortunately, having (apparently) breathed badly for most of my life, although the breathing exercises I was taught helped enormously I tend to relapse frequently, and have to start the exercises again. I'm going through a relapse at the moment.

When I was at my worst I couldn't hold my breath for more than about 1 - 2 seconds. The exercises I was taught initially made me feel as though I was suffocating.
 
"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Defintion and Guidelines for Medical Practitioners An Overview of the Canadian Consensus Document", notes on page 6, " Breathing dysregulation include breathing irregularities, sudden attacks of breathlessness, exertional dyspnea, and holding the breath inappropriately."

https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf

The CDC also notes"Shortness of breath", near the bottom of the page:

https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html
 
hedgehog said:
I tried an inhaler, and it helps for a few minutes. I checked and am not taking any GABA substances. Does sitting up or lying down make a difference for any of you?

I think I’m panicking because it’s night and I can’t go to the doctor, plus feeling too sick to go. I have an appointment tomorrow with a doctor I’ve been to before that isn’t sure cfs exists and thinks I’m fine. (I told him I’m bedridden, and I went in a wheelchair, and he asked me how work is going and said, “but you’re good right?”).

I contacted my specialist days ago and didn’t receive an answer, so I assumed they thought it wasn’t serious. Perhaps they were out of the office though.

It feels like there’s no place for us to go when it comes down to it. Where should I go? The ER would find nothing wrong and discharge me. A specialist would take months to get a first appointment. My primary care doctor thinks I have ptsd and nothing else.

I just repeat to myself that I’ll be okay and make it through the night. Probably being afraid is exacerbating the problem. Sorry for venting.

-Edited for clarity
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I've only just seen these posts but fascinated by this because - if your description of air hunger is right it is insightful and takes the timline back to where I assumed with more precision:

I used to be an athlete
I started getting an inability quite often to get a full breath and would sit there trying to get the breath 'far enough down' or spending a lot time trying to get a yawn. I got it on the odd occasion during sport. It was hugely regular when I was doign lots of sport and v full calendar of other things. This eventually became interpreted as panic attacks. BUt I also got such bad treatment from others these actually started too.

I notice that looking back these stopped over the space of a year where I wasn't doign sport anymore. It was at the same time, and ever since that I started to need windows wide open when I slept no matter how cold it was outside. I couldn't breath and would get all sorts of horrible symptoms if not. Even if not sleeping I needed airflow. This has been the case ever since.

I have got out of breath on walks when I was really quite ill (colleagues would drag me on the odd one then note it) but still able to.
 
Lately I've had concerning levels of some kind of breathing problem or air hunger. Undoubtedly in part caused by the hot summer, but I also noticed how it got worse during physical activity and lasted a day.

Maybe a return of my childhood asthma, now in more insidious and chronic form instead of attacks?

How common is lung damage caused by asymptomatic / low symptom level covid-19?
 
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I have recently learned that the breathing symptoms I attributed to ME may be due to asthma, and my uncontrolled asthma could contribute to the fatigue and brain fog.

I have had exercise induced asthma for many years. In 2018 it got a lot worse (and I had become very, very fit and strong). Instead of upping my asthma treatment, my doctors told me it was anxiety. Over a very long period of time I gradually stopped exercising and was diagnosed with ME early 2020.

I stopped using my baby dose of steroid and reliever because it made no difference and the doctor had convinced me it was either anxiety or ME. If they had been willing to increase treatment for asthma symptoms, I would have. This all led me to believe that it wasn't asthma (asthma meds don't make it better so must be something else, right?).

I have breathing symptoms like air hunger and constricted chest and very very slight cough every day, as well as the symptoms associated with asthma attacks (fatigue, brain fog, tons of yawning and sighing, feeling heavy and weak, breathlessness, etc). I also have more sudden attacks at least a few times a week, all of which I manage with concious breathing and positioning and so on. It can take a while to calm it down, I have never needed to go to hospital, but according to my new asthma plan I should have been going regularly.

I had an asthma review recently and didn't talk about the breathing symptoms I put down to ME and anxiety, just the clear cut sudden 'attacks', because she asked about 'attacks' and it didnt even occur to me that the ME stuff was relevant.

Afterwards it all dawned on me so I booked another review. I explained all of the above, she didn't seem to hear it. I had to say "so, tomorrow when I wake up and have air hunger and my inhaler doesn't relieve it within x time, I need to GO TO HOSPITAL? And same the next day?". She asked me to repeat how long these daily symptoms have been going on, and again I said - years. She thought it was just in the last few weeks since our first conversation, I guess she thought I've suddenly started paying attention to my breathing and am getting anxious about it and over thinking it?

When I said "at least three years, daily" she went a bit quiet. Then stepped me up to a combo inhaler, and then also decided to refer me for spirometry and booked me for another review in six weeks.

Hmm. Looking forward to seeing whether this new level of support affects my breathing, and potentially the fatigue it must be causing or adding to.

Eta spelling
 
From the thread Brainstem volume changes in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID patients

Midnattsol said:
We have a thread on breathlessness and air hunger in ME, where more of us report not getting enough air/at least feeling like we don't get enough air
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Thank you. I can add my note.

Air hunger was the very first symptom I noticed when "the switch was flipped", then I realised my heart rate was also up. It was mild initially, but clearly abnormal. It got substantially worse but is infrequent now, but can occur after meals along with tachycardia.

In those very early days after I initially thought generically "Huh, I must have a virus", I wondered if I might have accidentally exposed myself to a toxin affecting the ANS, which is a good illustration that doctors clearly do not know enough about postviral conditions. (Retrospectively, fatigue had been setting in, unnoticed).
 
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