Q&A: One GP’s lived experience with long COVID

Nearly 18 months ago, near the end of February 2022, Moss Vale GP Dr Fiona Mackintosh contracted COVID-19.
 
While the dangers and risks associated with the disease are well known, for most people symptoms resolve within a matter of weeks and it is not long before they can return to a normal life.
 
However, Dr Mackintosh has had an altogether different experience, with long-term post-COVID symptoms of fatigue and pain often preventing her from being out of bed for more than a few hours at a time, let alone returning to clinical practice.
 
To provide a window into the lives of people with long COVID and help inform the care and management of these patients, she agreed to sit down for a question-and-answer session with the GP lead of the South Western Sydney COVID-19 Working Group, Dr Ken McCroary.
 
In the first section of this special two-part Q&A, Dr Mackintosh recounts what it was like in the weeks and months after contracting COVID-19, from interactions with the healthcare system to the impact it has had on her family.
 
KM: Fiona, tell us about contracting COVID, your experience of the infection and the subsequent events of ongoing symptoms and eventual long COVID.
 
FM: I contracted COVID at the end of February 2022 and had a mild-to-moderate case. I had a week of feeling pretty awful with temperatures and aches, and I remember being very fatigued at the time.
 
I had a little bit of coughing, just that horrible chesty feeling. What I noticed after that was the ongoing and persistent fatigue. I had to sleep every day for a few hours … I would get up, have a little bit of activity in the morning and then I would have to go back to bed and sleep for two or three hours.
 
After a couple of months, it was still there … [and] the more I did the more I would get fatigued, to the point where I felt like I was walking through quicksand.
 
I would seize up if I walked too quickly or if I walked from the car to get the milk at the back of the supermarket, that sort of level of exertion. What I also started to notice was I would become quite tachycardic when I was tired, even going to the shower.
 
I wouldn’t say I was the fittest person beforehand. I was working full-time as a GP, but I was exercising at least three or four times a week, I’d take a good 5km walk with a friend and do other things. This was a considerable slowdown for me and, at that time, we were getting a lot of information [from the World Health Organization] about chronic fatigue and long COVID being post-12 weeks.
 
In those early days I just monitored my symptoms to see how long this was going to last for, and doing sensible things like cutting back my activity to a level I could cope with and seeing if it would just naturally settle. Then, of course, it hit the 12-week mark and then the six-month mark and now it’s 12 months later.
 
The other interesting thing that happened was the change over the 12 months. Initially, it was very much the post exertion of malaise and exertional fatigue up until about six months when I was eligible for a second booster or a fourth COVID vaccine.
 
I had a vaccination at the end of July and my symptoms changed, where the fatigue improved a little and I noticed particularly the foggy brain feeling of fatigue change. I felt a little more alert during the day, but I then got some chronic pain. After that booster, I started to get a very generalised body ache.
 
It is a strange feeling … you are just extremely exhausted and your whole body starts to ache. It is a heavy pain and quite unusual – the insides of my elbows and strange areas ache.
 
I notice that too much exertion – if I carry too much, if I do a thing that is too heavy or over-exert myself – causes the pain as well as the fatigue now.
 
KM: What is it like with the cough, the chest, fatigue, the malaise and the post-exertional stuff? You can have a rest and it doesn’t get any better, does it?
 
FM: I just get these small improvements if I am rested … I would sleep for 10 hours, and I would wake up tired.
 
I’d sort of get myself moving and start to feel that tiny bit better after breakfast. I would [then] have a couple of hours where I would feel a bit alert and I could maybe do something like hang up half the washing or check an email, [but] by 9.30 am I would be tired again.
 
I would try to push on until about 11.00 am, have something to eat, then by about 11.30 I would be back in bed. I’d have two or three hours’ sleep and then I would sort of lay around for a while before I got going again. I’d be okay for dinner break with the family, I could potter around and be up and going for a few hours in the evening before I went back to bed.
 
That was the pattern of the fatigue in the first six months.
 
The coughing was initially with the first infection. My son had it at roughly the same time and he had something similar where he described a tight irritated chest – not chest pain per se, but what I imagine is more a sort of pneumonitis or an irritation.
 
It’s that irritating cough I noticed, and then it triggered for me exercise-induced asthma. I had some breathlessness that continued until we recognised and treated it. That was the cough pattern for me.
 
KM: You also had some experience with the long COVID clinics as well. Could you expand on that?
 
FM: Luckily or unluckily, who knows, it was about the time in March when my GP and I realised that maybe I did have long COVID as the symptoms were persisting for a bit longer.
 
The COVID clinic at St Vincent’s was opening and my GP suggested we put in a referral and get things looked at. We did that and I had the barrage of blood tests and made the referral. It was noted the only unusual thing in my blood was my Epstein-Barr virus was quite reactive – both my IgM and IgG were reactive.
 
We now know that happens in long COVID. Unfortunately, the clinic had so many referrals it was six months, in August, until I was reviewed.
 
I had a review by the rehabilitation specialist, which was very comprehensive in the sense they looked at all of the symptoms of long COVID – I really only had breathlessness and the fatigue at that point – including functional capacity and things like that.
 
It was a very targeted review and, at that time, I got the impression what they were looking for was, ‘Did we need to do an MRI for brain fog and confusion? Did we need to do further testing on scans for lungs? And did I need to have anything else done?’
 
It was decided ‘No, I did not’. It was predominately fatigue, so it was very much ‘Okay, go off and manage your fatigue and here are some resources you can use, but we don’t have any capacity to follow that up’.
 
That didn’t seem particularly useful for me at that time, and maybe the two reasons for that were they had not really defined what they were doing with the clinic, or what the clinic was. Were they just screening for those more significant people or cases or looking for other possible complications? We hadn’t been dealing in fatigue management and rehabilitation for the post exertional sort of symptoms.


Dr Ken McCroary is the GP lead of the South Western Sydney COVID-19 Working Group.
 
KM: It is one of my frustrations as well. As GPs, we have been dealing with post-viral syndromes, chronic fatigue syndromes and myalgic encephalitis for decades. Then you get these tertiary centres or quaternary centres setting up clinics to deal with breathlessness, [when] the vast majority of people are not actually hypoxic, are they?
 
FM: There are a few with those symptoms and that is something that should be managed through primary care, but that is not how things are prioritised these days.
 
KM: You have an interesting dynamic in terms of the physician becoming the patient. I find that concept quite interesting and terrifying. How was it?
 
FM: It was interesting because you are suddenly a study, and you start researching and trying to look at chronic fatigue literature and doing your own searches and finding all sorts of off-label things that people have used or trying out, like COQ U10.
 
There is lots of ‘will that work?’, ‘won’t it work?’ or ‘is it worth giving it a trial?’. So we tried, but it didn’t make any difference.
 
You start doing those sort of processes as well as just trying to reassure yourself you must be patient sometimes and go with the flow. You observe the symptoms more and see what you can do to control that anxiety about ‘how long is this going to be?’ and ‘when can I go back to work?’.
 
It’s an interesting process. Over the whole year our information boomed as well. The information about COVID was very little and suddenly over 12 months we had so much more.
 
KM: With the whole patient experience, obviously there is a lot of vulnerability we are not used to. Did that have any benefits as well, in terms of empathy and compassion as a physician?
 
FM: I think so, absolutely. We have heard many stories about doctors who become unwell and then write books or articles about their experiences. It reminds you the systems and processes are sometimes long-winded, complicated and confusing.
 
Sometimes, when seeing specialists, the communication isn’t clear. You pick up different things to what they think they are saying or what us GPs are saying.
 
We think we are explaining things well, but sometimes we are just not on the same page or giving that same impression – I’d pick up something widely different to what my husband thought the specialist was saying.
 
Communication is really important, especially when there is this complex uncertainty around the disease process. It can be very difficult to settle with it, calm yourself and go with the flow. Because we don’t really know, it is hard to sit with that uncertainty sometimes.
 
KM: I think being so forthcoming with sharing your experiences is helpful for us as well, because it has obviously had a major impact on your life, home life, professional life – everything – hasn’t it?
 
FM: Yes, it has. I haven’t returned to clinical work in 12 months so that has impacted on my patients. They have just disappeared, unfortunately.
 
I had been working seven sessions plus administration and as a GP supervisor. I had two registrars and suddenly I was not available at all.
 
My clinic has taken over that load and I’ve managed to do some teaching and some gentle once-a-week teaching for the registrars. In regard to more formal things, I haven’t been able to return to that patient load.
 
Family-wise, I was lucky I had put in some income protection in our self-employed status. I think we should all have some income protection in place in our insurances. I was fortunate I had done that many years ago.
 
But it is hard on my husband. I get tired, I can’t do housework, take kids to places or do things to support the family. I have a 16-year-old daughter in Year 11, and she has stepped up to do some things maybe she wasn’t ready for.
 
KM: A lot of adjustment for everyone.
 
FM: Yes, it is hard. Socially you can’t go places very much. I feel I’ve gone through my COVID lockdown again because I don’t really leave a small area around my house. I am stuck to a small location.
 
KM: How do you cope with that change in your life? Suddenly, one day, you have a chronic illness.
 
FM: When I first started looking at information, I thought to myself, ‘Okay, if this lasts over 12 weeks then on average this may take up to 12 months to settle down’.
 
I had that in my head from very early on that I would have to just relax into it. This is going to take time and go away eventually, but you are just going to have to do what you have to do to get over it.
 
I was very certain about that and then I think I was so tired and sleepy that I couldn’t really become too worried about it. I found a rhythm of just being, doing my mindfulness, doing the relaxation, doing the calm things, doing what I could during the day and taking each day as it came.
 
I tried to cut it down to that daily pacing, the only way I could manage, and that kept me comfortable mood-wise and functionally it helped me get through what I needed to do. That was the only way I could think about it.
 
Part two of the Q&A will focus on chronic fatigue and post-viral symptoms, coping strategies, tips for clinicians, and the importance of having a trusted GP.
 
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