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Breathlessness and air hunger in ME/CFS

Discussion in 'Cardiovascular and Respiratory' started by hedgehog, Dec 30, 2017.

  1. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    A very significant symptom for me, that is breathlessness not air hunger.

    Too late to write now but I will try and get back to this thread in the next day or two. Very interesting.
     
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  2. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    Had this constantly when severe and still get it sometimes. Just like others one of the first ever worrying symptoms for me was labored breathing and lightheadedness after climbing stairs (lived on the 4th floor when the whole thing started for me). The descriptions from Long Covid patients seem very familiar (speaking specifically of those without observed damage that would explain the symptoms).
     
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  3. Joeblow604

    Joeblow604 Established Member (Voting Rights)

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    Air hunger for me is this feeling like I just don't get a full breath. Chest feels a little heavy. Not wheezing or gasping or out of breath just more like my lungs only open 75%. I do have more brain fog and a heavy feeling in head and body when it happens. I find quercetin relieves the symptom within about 15 min of taking it. I normally take 250mg in morning and afternoon and 500mg at night and keeps it away completely. Stopping it it takes a day or 2 to come back. One blip however was I had an abdominal CT scan last week and when they injected the contrast it came on right away. I had to take extra that day.
     
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  4. NelliePledge

    NelliePledge Moderator Staff Member

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    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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  5. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    One of the problems I noticed when I first became ill was when swimming. At the time I didn't put this down to breathing but maybe it is a factor now that I'm thinking about it from that angle.

    Pre ME I used to happy swim about 50 length of a 25 metre pool in about 45- 50 minutes. The limit being a self imposed no more than 50 as once I'd warmed up I could happily stay in there much longer.

    Pre ME once I was on my 7th or 8th length my body would stiffen, my breath would be less free and my timing wouldn't be quite as synchronized. It would literally feel like swimming uphill. Keeping a steady pace, by length 10 at most, this would disappear. Suddenly my movement and breath just freed up and flowed and synchronising breath with movement was effortless - unless I really pushed the pace.

    Post ME in the very early days & way before I could be accused of being deconditioned the stiffness & lack of flow in movement & breath happened much sooner & no matter what tactic I tried it didn't disappear. It got worse. I never seemed to be able to get through that warm up phase but was trapped there.

    While some of that has to be down muscle issues, I think breathing has to play some part. I could no longer get it to just flow and synchronise again and the more I tried, the worse it got.

    When I say the more I tried, I don't necessarily mean pushed myself more, though I tried that too. I went slower, and tried to maintain a steady pace, I tried taking little breaks, I ditched the pace and slowed down as I went along. I switched to using the breast stroke only (I used to mix up 10 lengths or so of different strokes normally) as I found the breathe synchronisation is marginally easier. Once I got ME that easy, free flowing movement, synchronised with easy, free flowing breath became a thing of the past.
     
    Last edited: Oct 7, 2020
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  6. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Breathlessness has become a severe issue for me since about 2016, not so much in the earlier years of the illness. In fact in the several years before the illness took hold in 2007, I had become something of a gym bunny as well as doing yoga and tai chi classes. It was the fittest time of my life and I could climb stairs easily. I continued to be able to do some carefully limited physical activity in the first years of my illness.

    I should mention however that climbing produced some problems from about adolescence onwards in the sense of being unfit if I had to climb hills. For example youth hosteling with school friends in Snowdonia had me struggling to keep up but when diagnosed with mitral regurgitation in 2016, that made some sense, in that I had probably been affected for a lot of my life.

    Now exhaustive testing of the heart and lungs at a leading hospital
    has pronounced that my breathlessness is something of a mystery.

    This breathlessness on walking pre ME only affected going uphill not walking on the flat. in fact one of my favourite activities on Xmas Day for many years was walking alone briskly for several miles at the end of the afternoon. It swept away the chaos of the day. Now I struggle to walk more than a few yards because of breathlessness.

    Back to 2016-almost 10 years into ME. I saw a cardiologist who did an informal stress test by asking me to accompany him around the hospital at his speed ( I was 69) wearing a pulsox monitor and some sort of heart tracer. The stairs were a nightmare. When we stopped my HR was 142 and I was completely breathless.

    I had arrived at the hospital as an ambulant patient and left needing a wheelchair. I felt very ill on the day of the hospital visit but that passed through but the breathlessness never did. I really miss being able to go for a walk. It feels as if something broke that day. I have tried hard to regain capacity without success.

    Air hunger- not a usual symptom apart from several weeks earlier this year after an MRI scan which had required me to hold my breath AFTER exhaling. For some reason I found this hard, told the staff who slowed things down but this meant I was in the scanner for an hour and a half. Heavy pem followed and then I couldn't seem to catch a full breath. Fortunately this passed but it's an unpleasant sensation so sympathy to those who experience it a lot.

    Breathlessness, alongside pem and orthostatic intolerance are my worst symptoms. I should add that breathlessness is much worse when in pem.

    There seems a lot of it about on this thread.
     
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  7. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Compared to many of the people who replied to the thread I would class my breathlessness as occasional and mildish.

    It doesn't happen all the time to me. So I could go for a walk tomorrow and struggle (especially if walking up a slope) but next week I could do the same walk at a similar speed and be absolutely fine.

    Is it variable/intermittent for you, or does it happen all the time?
     
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  8. Aslaug

    Aslaug Senior Member (Voting Rights)

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    Variable/Intermittent in my case, but from starting out at being a very transient thing it can now last for days.
     
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  9. Rosie

    Rosie Senior Member (Voting Rights)

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    At very severe ME I had exhaustion, every cell in my body felt exhausted. I think this was due to the complications of very severe ME where various systems in the body start to express or border on very scary other complications as like a cold or flu can end up with pneumonia. (?)

    At severe ME I noticed one symptom of PEM was feeling like I had run a marathon. It would sometimes take a whole day for the breathlessness to ease.

    When it comes to sitting or standing it feels like the opposite to the PEM breathlessness where the lungs are expanding more rapidly. With sitting and standing the breathing feels more slowed down and laboured with difficulty. A melting feeling where it feels the breathing could stop.
     
    Last edited: Oct 13, 2020
  10. Mij

    Mij Senior Member (Voting Rights)

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    I forgot to mention that my breathlessness and increased heart rate occurs in the a.m hours and early afternoon. The contrast is like night and day. I can barely walk 2 blocks or climb a set of steps without feeling out of breath in the mornings, and yet in the evenings I can climb 11 flights of steps quite easily.

    If I have a viral infection then I feel easily feel short of breath no matter the time of day- but even then the mornings are worse.
     
  11. mango

    mango Senior Member (Voting Rights)

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    I often feel out of breath, which in my case seems to be related to orthostatic intolerance. Sometimes just from sitting up in bed. PEM makes it much worse.

    When I'm having severe PEM it sometimes feels as if I'm on a very high altitude, as if the air is way too thin, as if there isn't enough oxygen in the air that I breathe, no matter how deep breaths I'm taking. I wouldn't describe it as difficulty breathing though (there's no sense of heaviness, quite the opposite), it's just a "lack of oxygen" kind if feeling. It tends to make me sigh very deeply, repeatedly.
     
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