Breathlessness and air hunger in ME/CFS

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.

 

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).

 

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.

 

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.

 

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.

 

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?

 

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.

 

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.

 

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.

 

This post has been copied and the ensuing discussion of breathlessness in ME/CFS moved from this thread: Paul Garner on Long Covid and ME/CFS. BMJ articles

Something that this discussion makes me think of may be of more general relevance.

The person with fatigue due to heart failure and the PWME are almost opposite in a sense. It always seemed odd to me that Julia Newton thought that they had the same problem - 'fatigue'. The difference is this:

The person with heart failure walks right in to their physiological problem, unaware that anything is going to hit them and suddenly finds themself impossibly short of breath at the time. Their warning systems are not working.

In contrast the PWME feels muscle pains or is unable to stand (OI) or has brain fog - in a sense the warning system seems to be in overdrive. It is also malfunctioning in that it may kick in much later. But that delay shows that the symptoms are not directly due to shortage of oxygen or whatever at the time but to warning systems that the body uses to protect itself from getting in to dangerous physiological situations.

 

I'm in my 30's, my neighbor in her 60's. We sometimes walk together. The last time I observed that initially I'm the one with apparently better cardiovascular fitness and strength, as seen by her breathing heavily while walking uphill and being a little slower. But she can keep going, while my initial energy wears off relatively quickly and I start to slow down, lose strength and begin feeling unwell. The next day I had a mild crash and had some difficulty going upstairs in the house. It's not normal for a person in their 30's to need to grasp handrails on the stairs because of fatigue and weakness resulting from walking a little longer than usual on the previous day.

 

The shortness of breath that occurs when someone does more than their fitness allows is different from the situation in heart failure. The person with heart failure brought on by exertion is suddenly hit by extreme breathlessness because of oedema building up in the lung. There is no warning. They turn blue and cannot do anything for several minutes. PWME do not turn blue from hypoxia. Some sort of warning signal occurs before tissues run out of energy supply.

 

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.

 

Dr Paul Cheney had a theory that desaturation is not occurring at tissues in PWME due to blood alkalinity in response to intracellular acidosis. He described experiments with a pulse oximeter which showed a high oxygen content on the blood, so high it showed desaturation was not occurring properly and this would also cause the blood to be red, not blue, even though the PWME feels deprived of oxygen, re: not blue in the face observation. i.e. its a bit insidious, like carbon monoxide poisoning turning the blood cherry red.

He said alkalosis was due to bicarbonate loading of the blood to feed cells a neutralising ion. Cheney theorised the cellular acidosis was due to metabolic dysfunction resulting in proton build up from mitochondria, a couple of decades ago, from his clinical observations in the USA.

From personal experience, when I consume foods with bicarbonate in the oxygen starvation feeling gets worse. When I eat acidic foods and or take NADH it improves though NADH has other neurologically stimulating effects I do not tolerate well.

High sugar diet makes me feel rough but in a slightly different way, not sure if its related, due to the products of metabolism. A moderately ketogenic diet is also moderately helpful but a purely ketogenic diet is not. High lipid diet with restricted complex carbs seem to be a happy medium. L-carnitine which is recommended for PWME (along with D-ribose) is a lipid transporter which moves lipid into mitochondria, which may be related. I like the tartrate form best.

I have gravitated to a diet which besides the above includes dilute apple cider vinegar with mother in mineral water as a drink i.e acidic and I also eat celery every day, which has some coumarins, blood thinner, in it. This all seems to help.

FYI

 

Feeling out of breath for me has always been viral or magnesium deficiency (many years ago). I've been able to keep some sort of fitness over the last 30 years with ME, so it's not related to fitness for me.

 

I think for me this feeling mostly comes with high heart rate. It feels like being out of breath but I wouldn’t say I’m panting or gasping for air but it feels the same if that makes any sense at all.

I had to answer the phone the other day and then take a 2 flight of stairs trip to the computer which I don’t ever do. At the top of the stairs I had to take stock....the raised heart rate feeling together with a feeling of not having enough oxygen (light headed, slightly nauseous, unsteady on ones feet). They all feel familiar (like being out of breath) but for me it’s subtlety different. I am probably not explaining it right. But it’s hypoxia-like but not out of breath like when you have run a mile.

 

You can experience temporary dyspnea after a short burst of energy expenditure, and since our energy/stamina is compromised, then I would assume that feeling out of breath w high heart rate would be normal for us?

 

Typically I have to be awkward. I found the reverse happened when my T4 dose was off. I got into a bit of a mess and my TSH rocketed. Unfortunately, for some of the symptoms were masked by another problem.

I felt breathless (without really panting hard if I recall), extremely dizzy, weak and light headed. I had just come up the stairs a bit quick.

I collapsed into a chair at the landing and after a minute had the wit to check my HR (nearly forgot I was wearing a monitor at the time). It was 50 & rising. What it dropped to I really don't know (unfortunately I wasn't recording).

I would have bet a fortnight's benefit that it would have been racing, i felt like I was having palpitations.