Managing Long-COVID: A respiratory physiotherapist's perspective

The first thing I learned in physio school was “prepare the area” – in other words get everything you need for your treatment session and make sure the space is clear and safe for you and your patient.

The second thing I learned was “treat what you find” – which basically means do your assessment and then manage the symptom you see. It’s meant to help novice therapists feel better about not knowing everything. You don’t need to know EXACTLY what is going on to help. Your assessment finds the symptoms you can treat. Experience is generally what’s required to then fully understand the underlying mechanism.

And this is how I feel helping people manage long-COVID. I’ve been treating what I find. I’ve been plunged back to novice – not completely, I’ve been doing this for 16 years of my life, but I don’t have my usual ‘when someone presents like this, I do this, and they get better because evidence and my clinical experience tells me so’.

It’s a weird situation but I really feel like I’ve learned so much and I’m hoping I can pass on some knowledge which can help others.

Disclaimer – this is my personal experience and viewpoint based upon my clinical knowledge and reasoning. I am not claiming to be completely right or to have this whole thing figured out. At this stage we can’t provide evidence-based practice for long-COVID.

So, what have I found so far??

Everyone with long-COVID presents differently. One person will have one symptom set and one will have another. And that symptom list is almost endless.

95%, maybe even 99%, of the people I have seen were already stretched either physically or emotionally prior to infection.

Some are type-A go getters who live on the edge of exhaustion, some were training physically for an event and some were dealing lots of emotional stress. It’s almost as if their body wasn’t in a great place to then deal with coronavirus.

EVERY single person I have seen with long-COVID breathes poorly. All of them. And many were very likely to be poor breathers pre-COVID, because when I start to dig into their past health they realise that they were already not breathing well. Many people have said that others had actually commented on how they breathe – the classic one is “you’re sighing a lot, are you ok?”!!

This could be because I have only assessed people who present with respiratory symptoms and it’s not as prevalent as I think, but it is a very interesting finding that breathing pattern dysfunction has been present in each individual I have seen. It certainly warrants further research and investigation. Particularly as around 10% of the general population has some form of dysfunctional breathing, irrespective of COVID.

Why do I think people are getting long-term symptoms?

I can’t be 100% sure and there will be underlying mechanisms which I’m not aware of, but this is what I’ve seen so far……

1 – The virus has caused damage to the body. I’ve seen papers and clinical cases where people have been diagnosed with pulmonary emboli or cardiac damage for example. Do I think this is everyone? No. The important thing is that anyone who has symptoms is reviewed medically before they seek help from someone like myself. If I believe further investigation is necessary based on my assessment I always refer back to the medical team.

2 – Everyone I have seen so far has an autonomic nervous system which isn’t working well. The sympathetic branch doesn’t seem to switch off! A presentation of constant ‘fight or flight’, and little evidence of the parasympathetic ‘rest and digest’ branch doing its job.

This disturbance ranges from fairly mild symptoms to all out dysautonomia such as postural orthostatic tachycardia syndrome (POTS), and everything in between. These symptoms include high heart rates, dizziness, urinary and digestion issues, visual disturbances – in other words cardiac, respiratory, gastrointestinal and neurological symptoms. The whole spectrum.

It’s like COVID has short circuited the autonomic nervous system, fried it. I’m not sure if that’s because of the virus itself, possibly in some cases. Or because we’ve never experienced an illness in modern history where we’ve been bombarded with tales of intensive care, ventilation and death – that’s enough to put anyone into ‘fight or flight’. Or because the numbers of people who have been infected are so high. Or because these people were in a sympathetically dominated state previously. Or a combination of multiple factors. A perfect storm. I don’t know.

3 – Some people are presenting with post-viral fatigue, chronic fatigue syndrome/ME. Again, this isn’t everyone. Some people are living with the classic fatigue cycles where they’re laid up after doing the smallest task such as showering, hours or even days later. Others don’t report fatigue at all. So, it isn’t just a fatigue-based presentation.

4 – And finally, some people only have a breathing pattern disorder. Their symptoms and presentation respond really well to breathing pattern re-education. People with breathing dysfunction also fall into the autonomic dysfunction group above. Breathing poorly will keep you in a fight or flight state too. And as every person I have seen breathes poorly it’s essential we manage this as part of treatment.

What have people with long-COVID found helpful to improve symptoms?

I’m not going to go into huge amounts of detail here – the blog will end up 100 pages long and I really want to focus on breathing (obviously!) – but here are some of the more commonly accepted management tools.

· Ensure you are being appropriately medically managed. Some people require further investigation and medication.

· REST! – this isn’t something you should be pushing through. Your body needs to recover. Be kind to yourself.

· Pacing – you have limited energy supplies. Break up your daily tasks. You may only get to the ‘must dos’ and that’s ok. Take regular breaks. Set alarms to make sure you don’t get engrossed in computer work. It’s not just physical tasks, mental exertion will also cause fatigue.

· Hydration and nutrition – your body needs fuel to repair. Eat well and get plenty of fluids. Some people are vitamin/mineral/electrolyte deficient. This should be confirmed by blood tests and appropriate supplementation started.

· Sleep – you need lots of it! Ensure your run up to sleep is good – no caffeine after 3pm, no screen time for a few hours before bed, maybe a warm bath to relax. A sleep hygiene regime which works for you is essential.

· Exercise – you’re expecting me to say, “get up, start moving, get the heart rate up and the blood pumping”. You’d be wrong. For most people I’m suggesting not exercising initially, especially those with fatigue – particularly aerobically. You don’t need further sympathetic stimulation! Once we’ve reach stability then absolutely, we need to slowly get you moving again, but you shouldn’t be ‘pushing through’.

· Avoid stimulants – caffeine, alcohol, sugar. I know it’s the fun stuff but again stimulation isn’t what you need. You may need to gradually reduce your intake rather than abruptly stopping.

· Stress management – life is so stressful at the minute for most (home schooling, WFH, can’t see your friends and family), and 100x worse if you have long-COVID. I know it’s difficult but try to keep the stress under control. Ask for help where you can.

· Relaxation – that doesn’t mean chill in front of the tv, go for a run or mindlessly flick through social media. I mean actual relaxation, formal relaxation. A time to switch off. To check in with yourself. To focus on your breathing.

Final point on this topic – I think we’re underestimating the mental affect that being unwell with COVID is having on people. Many people I’ve spoken to were extremely frightened when they were poorly. This will inevitably affect their ability to recover. I’ve recommended counselling or talking to a professional who can help them process their experience. And to add to this people are trying to come to terms with how COVID has changed their lives. They can’t do what they did before, many unable to work, look after their children or do the activities they enjoy. There is a huge loss of self. A feeling of helplessness and isolation. Many feel let down by their healthcare systems. No wonder mental health is suffering.

Foundations

The way I’ve been looking at this is – those important factors are the foundations. The foundations need to be right. And COVID has played a part in unbalancing the foundations – like an earthquake.

If our foundations are shaky how are we meant to build a stable house? COVID has meant the house has fallen down. We need to build it back up again on strong foundations.

Also, in my view one of the vital parts of the foundations has been left out……breathing.

Rest, hydration, sleep, diet and pacing get a lot of press. We know they are important, and we know they work. But how we breathe is just as, if not more important! Why do we not talk about it? Why does it not get the attention it deserves?! In the case of long-COVID, poor breathing will keep driving that sympathetic nervous system and those respiratory symptoms. It is a fundamental part of symptom management.

How have I been helping people manage their symptoms?

I’m aiming for stabilisation first. Stopping the boom-and-bust type pattern. Getting the foundations in place and providing support and direction where needed. I’ve begged. Actually begged people to stop pushing themselves to make better progress in the long run.

Education – lots of it! Education about general self-management and education around breathing. Everyone is astounded by what they learn! My aim is to give people back some power and feeling of control. There is something you can do to help you feel better!

I’m an ear. I listen and I understand. I hear your struggles and I provide as much support as I can.

Then I do what I do best. Fix your dodgy breathing!!

The dysfunction I’m seeing is different for each person – some have classic hyperventilation syndrome. Breathing at 20-25 breaths per minute into their upper chest. Some people are shifting huge volumes of air per breath. Some are really CO2 intolerant, with breath holds of 2-3 seconds. Many have significant respiratory muscle weakness requiring breathing pattern re-education and inspiratory muscle training (IMT). Some have a combination of everything! I’m also using breathing work to cool off the autonomic nervous system. Slow, abdominal breathing with longer exhales to try and reduce that heart rate.

I think it’s really interesting that not one of my clients realised their breathing was dysfunctional! And the dysfunction is often quite significant. In fact, when I take their respiratory rate (how many breaths they take in 1 minute) they all tell me it feels slow, but they’re actually breathing twice as much as they need to!! To read more about ‘normal breathing’ please check out some of my other blogs.

So far I’ve seen some promising results – with breathing retraining we can get on top of many symptoms, and not just the respiratory symptoms. Once good breathing is restored many people have found a reduction in a range of symptoms and this has meant we can start reintroducing work and leisure activities gradually. It’s a long process – weeks rather than days, but as I keep saying to my clients ‘small wins are good’. Moving in the right direction, no matter how slowly is how we get your life back!

I can’t promise 100% recovery for every person with breathing retraining. For some people, that is definitely possible. But if you have dysfunctional breathing you will get symptom relief to some extent and it needs to be in your foundation building toolkit.

Final thoughts…..

Long-COVID is a thing. People are suffering and they need help. We also need research and a more cohesive approach in management.

There isn’t a one size fits all plan. Each person will require a different approach with a focus on one area more than another. But….. get your foundations in place. And please include your breathing in your foundations. Not just for now but for the rest of your life. There’s nothing more important than breathing well.

I can’t help but wonder, if good breathing was accepted and understood as much as diet and exercise, would we be seeing such a significant impact from COVID-19?

It’s also really made me think about how we manage CFS, ME, post-viral illnesses and autonomic dysfunction. Breathing needs to be a staple management technique. It’s overlooked too easily. Yes, it’s hard to spot. To an untrained eye most look like their breathing is ok. But it could be the technique to provide the turning point for so many.

Will this be the catalyst to raise the importance of breathing well for good health? Not faddy breathing methods. Just breathing as our bodies need us to…..I really do hope so.

Please get in contact if you have any questions. You can DM me on social media – The Breathing PT – or email me at thebreathingpt@gmail.com

Breathe well,

Kelly