For the last three years, Covid long haulers have had to become their own advocates and researchers as they lobby for recognition, funding and proper healthcare. Their knowledge has been hard-won against a backdrop of sickness. They’ve pushed through symptoms that ravaged their previously able-bodies and become the experts of their own disease. 

That is why we decided that all the symptoms on this website should be written by patients, for patients.  As our co-founder Jenene Crossan says “They poured their hearts, their souls and their deep determination to find just enough energy to put their experiences down for others to benefit from”. 

Although we do not intend to give medical advice, the articles have been fact-checked by a wonderful doctor who is suffering from Long Covid too. 

About the author

I caught Covid during the first Omicron wave in May 2022, aged 28. At the time, I was working hard on improving my cardio fitness – but then those dreaded double lines showed up on the RAT. After my diagnosis, I spent one week feeling terrible with symptoms such as breathing difficulties, fatigue and headaches.

After complete whakatā | rest for two weeks, I gradually eased back into mahi | work. I was determined not to overdo it, and fortunately, overall my recovery went well. However I did experience some lingering symptoms, including brain fog, fatigue and an unexpected sense of claustrophobia.

I continued to improve and did little or no exercise for two months, then rejoined the gym to get my fitness back on track. Less than a week later and still less than 90 days since my first infection, I caught Covid-19 again.

The second round felt much more bearable, with just a sore throat for a couple of days and some fatigue. Nevertheless, I took the week off mahi | work and rested. Once my isolation period was up, I immediately got back to normal life and the gym. A couple of weeks later, I caught an upper respiratory tract infection, which triggered a severe asthma flare-up. Since then, there’s been an onslaught of various symptoms and illnesses, most of which I’d never experienced before Covid-19. 

I now live with constant fatigue, brain-fog episodes, unexplained gut disturbances, swallowing problems, intermittent pain and breathing difficulties. I have yet to receive an official diagnosis of Kowheori Roa | Long Covid.

– Female, NZ European, Tāmaki Makaurau/Auckland

“Breathless Battleground” by Tracey Thorp

A brief explanation of Breathing Difficulties and Long Covid

Breathing difficulties in Long Covid occur because of Covid-19’s impact on the lungs. The virus disrupts the process of oxygen entering the bloodstream, by triggering the immune system’s inflammatory response in the airways. Oxygen and carbon dioxide cannot move through the lungs well, and fluid can build up. These factors can make it hard to breathe.

Symptoms vary from individual to individual, and the experience can range in intensity and sensation. At the severe end, breathlessness can cause prolonged gasping as the patient struggles to catch their breath. Shortness of breath may be triggered by physical activity, or occur even during periods of whakatā | rest.

A bad case of COVID-19 can produce scarring and other permanent lung issues, which can lead to long-term breathing problems. But even mild infections can cause persistent shortness of breath.

Breathing issues can also be a result of damage to the autonomic nervous system and is a symptom of POTS, a syndrome which commonly occurs alongside Long Covid.

Breathing Pattern Disorder

Breathing problems after Covid-19 can be due to a Breathing Pattern Disorder, which is an abnormal respiratory pattern. Though we do not yet know how Covid causes this disorder, it may have something to do with the disruption of the autonomic nervous system or damage to the lungs.

Normal breathing is when you breathe easily through your nose and gently move your tummy. If you notice that your chest and shoulders are moving a lot while breathing normally, or you are breathing loudly or through your mouth, yawning or sighing, this could be a Breathing Pattern Disorder. You may take large breaths while talking or have chest, neck or shoulder pain from muscle strain while breathing. You may also have ‘air hunger’, where you feel you aren’t getting enough oxygen or you may have to stop often while walking.

A breathing pattern disorder means you may be breathing faster than you should (hyperventilation) or have dysfunctional breathing. More of the waste gas, carbon dioxide, gets breathed out, instead of absorbed into the blood. But carbon dioxide is key to healthy breathing. Your blood will have lower levels of carbon dioxide gas, which unbalances the acidity of the blood. This causes symptoms like heart palpitations, dizziness, fatigue, and pins and needles in the limbs.

It can be useful to see a physiotherapist who specialises in breathing problems, like Breathing Works. These programmes help you to retrain your breathing into a normal pattern. Exercises can include nose breathing, diaphragmatic breathing, and slower breathing.

‘Belly breathing’ or diaphragmatic breathing is long, slow breaths through the nose, feeling your tummy expand as you inhale and deflate as you exhale. Slower breathing is generally done by lengthening the exhale and has many benefits. It can lower your heart rate, improve parasympathetic nervous system activity and help you to relax.

These exercises will become more natural over time, leading you to regulate your breathing pattern. While addressing a breathing pattern disorder is unlikely to be a treatment for overall Long Covid, it may be able to improve specific symptoms.

Breathing difficulties can be tiring and challenging. Sophie Harrison, who wrote about her experience for The Tyee, said, “It’s hard to appreciate how much energy breathing takes until you’ve experienced the bone-deep fatigue that makes you acutely aware of the effort to expand your ribcage for each breath.”

In my experience

Since my second Covid infection, I’ve had many episodes of breathing difficulties. I can’t inhale deeply, and get pain in my left shoulder and back. Sometimes I feel as if I can’t yawn properly due to lack of air. An episode often affects my quality of moe | sleep.

Despite this disabling symptom, my oxygen saturation is always within the normal range of 95-100. This is frustrating, as there is no obvious cause or medical proof of how I feel. It also means a doctor’s ability to diagnose anything is limited.

As an asthmatic, any breathing issues make me concerned and anxious, particularly if I am home alone. It’s very troublesome, as it’s difficult to distract yourself when something as natural and necessary as breathing becomes laboured.

What others say having breathing difficulties is like

While the experience of breathing difficulties can vary widely between people, a common theme is patients struggling to “get a full lungful of air”. One person describes it as having to “focus on the physics of breathing instead of it just happening naturally in the background. Breathing becomes work.”

Another described the feeling of their lungs being “full of fur”, and as if they were “breathing through layers of clothes”.

Those with milder breathing difficulties say it’s more of a “winded” feeling or having to “yawn to breathe”.

“I had to take a deep breath to finish sentences, but most times, deep breaths wouldn’t quench my thirst for air.”

– Jared

What I and others have tried

Breathing difficulties vary between people, depending on the severity and the underlying cause. If you have worsening shortness of breath, or your breathing difficulties are accompanied by chest pain, fainting, nausea, a blue tinge to your lips/nails or a change in your mental alertness, please seek urgent medical āwhina | help.

What I have tried:

  • regular use of inhalers
  • increased water intake (to reduce the mucus in my throat)
  • breathing exercises

What others have tried:

  • ginger tea
  • conscious breathing techniques used in yoga/meditation
  • breathing exercises for singing
  • a small amount of CBD oil and some chamomile tea were very effective for one person
  • seeing a breathing physio, such as BreathingWorks
  • an Oscillating Positive Expiratory Pressure device, such as AirPhysio
  • NoZovent anti-snoring device if struggling with breathing through a blocked nose

Best advice I received

The single best piece of advice I received was to focus on strengthening my neck and diaphragm muscles. A physio told me that desk jobs and poor posture can weaken your diaphragm and lead to improper, shallow breathing. By focusing on effective ‘belly breathing’, I can often calm my nervous system and wait for a wave of breathing difficulties to pass.

How others can help

I’d like people to understand that this is not simply the same as being unfit, and exercising can often do more damage in people struggling with Kowheori Roa | Long Covid. If I’m having an episode of breathing difficulties, it’s helpful if people simply stay by me. They need to realise it’s easier if I don’t kōrero | talk while I try to get my breathing back under control.

Clinical information

Dyspnoea, (the medical term for shortness of breath), refers to the symptom of abnormal awareness of breathing or the feeling of uncomfortable breathing. It can be acute (just lasting a few hours or days) or chronic (lasting more than four weeks). In severe cases, medical attention is needed.

Managing any existing conditions (such as chronic obstructive pulmonary disease or heart disease) well, and staying well fed and hydrated, can āwhina | help patients increase the chance of minimising lung damage.

Top 5 things to try

  1. Ask your doctor about getting inhalers.
  2. Increase your water intake.
  3. Practise breathing exercises regularly.
  4. See a respiratory physio.
  5. Strengthen your neck and diaphragm muscles.

For more information see:

Long Covid Physio’s and POTS UK’s explanation of breathing pattern disorders.




DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE

Content shared on this website is for informational purposes only. It should not be taken as a substitute for professional medical advice. Always seek the advice of a qualified healthcare professional regarding a medical condition, diagnosis or possible treatments. Long Covid Support Aotearoa is not liable for risks associated with using or acting upon the information provided on this website.