Breathing Pattern Disorder

I recovered at home from acute COVID-19 in the Spring of 2020 during a pandemic when access to healthcare and knowledge about disease progression was limited. My respiratory consultant explained, much later, that I had been recovering from COVID-19 pneumonia and would normally have been in Hospital for supportive treatment. However, only the most severely ill could be admitted at the height of the first wave; if your respiratory rate was <25 you stayed at home in order to prevent the National Health Service from being overwhelmed.

I contracted the virus at work in a Central London Community Hospital. After my first week of severe flu-type symptoms including muscle pain, fatigue, chest pain, loss of taste/smell I deteriorated and started having fevers, nausea and shortness of breath during activity when walking/taking stairs. In this second week I experienced ‘air hunger’ for the first time. It came in waves and lasted for a good while at a rate of 23 breaths per minute. This fast and deep respiratory pattern was new and felt quite nice to me, it was like a big fan had switched on in my lungs. It was like my lungs were ‘running’ whilst I was just sitting or lying in bed doing no activity at all. The vigorous shaking from my chest and abdomen would ‘disturb’ my sleep or when reading it made my iPhone bob up and down. As it felt nice to me I wasn’t worried. I was fascinated by this feeling that I had no control over (it is brain stem generated), but the physiotherapist inside me counted the rate. I was relieved it was <25 as that would mean a trip to the Emergency Department (A&E). These feelings of peacefulness during air hunger alternated with crying from exhaustion combined with total body pain when I was awake. I was later told I may have experienced ‘happy hypoxia’. At some stage my partner had to advocate for me to arrange a GP phone-appointment as urgent medical services were overwhelmed. Despite me mentioning COVID-19 several times, the consultation was musculo-skeletal focused around my back and leg pain, my worst symptom, and I was prescribed Co-codamol so I could sleep. I felt vulnerable, but assumed I was okay following this 5-minute phone consultation.

In week 3 I felt a bit better when fatigue, air hunger and pain reduced and I tried some light activity and stretching to reduce my residual body pain. As I was resting from some activity I had an arrhythmia with blackout followed by tachycardia. As I felt completely fine again an hour later when an ambulance came I declined to go to Hospital. My ECG and vital observations were normal again apart from high blood sugars (BMs). The following two weeks, however, I had severe dizziness, bradycardia, tachycardia, extreme fatigue, chest pain, low blood pressure and almost no urine output. My GP could not refer to cardiology or bloods at that time but told me to ‘push the fluids’ which I did. I couldn’t talk or walk without coughing uncontrollably and my voice was hoarse.

I tried to return to work with adjustments but the fatigue, chest pain, palpitations and breathlessness remained. After 8 weeks, I suddenly felt better and tried to run immediately. After that week of gentle returning to exercise my body shut down completely as I could not tolerate any activity anymore. I felt broken. All my symptoms returned but were worse including fatigue, chest pain, hoarse voice and weakness with episodes of breathlessness after activity. I had no access to any services as GPs could not refer to services with hospitals still overwhelmed. Exercise precautions following pulmonary and cardiac inflammation are 3-6 months which I had unwittingly overstepped as ‘most COVID-19 cases were supposed to be mild’ according to daily announcements in the media. I had pushed myself too soon but was also thinking I could have developed post viral fatigue.

Having a diagnosis after 4 months of illness was a huge relief and I am forever grateful to the UCLH Long COVID clinic. Being given a word to describe my problems was empowering. I was recovering from covid pneumonia and my cardiac bloods were okay 4 months after the arrhythmia. My sit to stand test did not cause desaturation and my chest XRAY was clear. The respiratory physiotherapist advised me to avoid mouth breathing, as I was gasping for air after the test (Heart Rate144, Respiratory Rate 35, Oxygen Saturation drop by 1%) and gave me a leaflet with breathing control exercises. I didn’t really think there was anything wrong with my breathing but had noticed when resting after activity, that my breathing remained faster (Respiratory Rate18) using abdominal and apical breathing. Management of crippling fatigue, my main symptom, had overshadowed the fact that my breathing wasn’t quite right. It was insidious and intermittent but may have always been there since the acute illness. When I became aware I tried to change it. The harder I tried the more breathless I felt but pursed lip breathing helped. My triggers were walking and talking.

My respiratory physiotherapist colleague and friend mentioned breathing pattern disorder to me for the first time. The two Zoom sessions we did together on a Saturday morning were eye opening for me. She explained how I should avoid coughing and sighing during talking as these are ‘sneaky ways’ to over breathe. She pointed out to me how elevated my shoulders were during conversation and that I should try to relax. We went through breathing control in supine which I have taught many times myself to patients. I had, however, simply lost control of what normal breathing felt like after 7 months of ongoing symptoms. The air hunger, useful in the acute stage, was no longer required but ironically caused breathlessness now. Once diagnosed, it took me 8 weeks to overcome it with education as the first step. The second step was trying to change habits. I stopped talking when walking, took breaks in between zoom calls and when the breathing pattern disorder struck I didn’t force changes but lay down to control my breathing focussing on letting go rather than forcing change. I could not sense how to let my exhale go as my chest felt like a big balloon overfilled with air. But in supine the tension in my lower ribcage and abdominals eased and my normal breathing had a chance to emerge again.

This advice combined with speech and language therapy (SALT) support were invaluable. My friend, previous SALT, in a London voice clinic explained to me that many SARS and MERS patients had struggled to regain control over their breathing and had hoarse voices as well. Inefficient respiratory patterns cannot support the breath properly causing strain on vocal cords when speaking. She gave me voice exercises focussing on making my exhale longer as well as advice to care for my vocal cords. Plenty of small sips of water, swallowing rather than throat clearing when secretions sit on vocal cords. None of this was a quick fix but daily, frequent and short practice of breathing control, cough and sigh suppression and rest after a conversation or activity really helped.

Ten months on I joined the ENO breathe programme, a collaboration between respiratory consultants and opera singers. Suzi led our online group of 20 people into singing lullabies and a range of breathing and voice exercises. This fantastic project made it fun to regain control and strengthen respiratory muscles such as the diaphragm. Slowly, my chest pain in between my ribs and diaphragm reduced and my voice became clearer and stronger. After 12 months my costochondritis pain reduced. This horrendous pain, triggered when opening the fridge or lifting small bags of groceries was initially sharp during movements on the left side of my chest and would linger as a central chest pain. It was different to the ‘lung burn’ pain experienced during activity or coughing in the first few months.

Having worked as a respiratory physiotherapist for many years before specialising in neurology I had never fully appreciated:

i) How ill and fatigued you feel when your cardiopulmonary system is affected

ii) How post viral fatigue and post-exertional malaise (PEM) can lengthen recovery significantly

iii) How hidden symptoms are

iv) How symptoms fluctuate

I am truly grateful for the help I received from colleagues, friends, Long COVID Physio and peer support. I hope that this story can offer some solidarity for those with Long COVID, often a long lonely journey full of surprises. Services have really not been timely and efficient and I count myself lucky to be a healthcare professional who could rely on my own knowledge and friends working in health care. Recently, I had a respiratory physiotherapy review via Zoom. It was a pleasant surprise that there was a follow up 9 months later from the Long COVID clinic. She was pleased with my progress and said I was doing all the right things combining rest, light activity and return to work. Increasing activity very gradually as symptoms allow and breathing control practice at rest and during activity remains important. In terms of exercise she recommended walking at a faster pace using breathing control to strengthen my diaphragm prior to running. Maybe in the next few months I will try a run or rollerski for a few minutes.

This blog is a feature in our Breathing Pattern Disorder resources page