Long Covid Patient: ‘I Thought Maybe It Was In My Head’

Revathi M. Murugappan, a usually very fit person, says in her post-Covid rehab, she had to rest for 10 minutes after just sitting and standing five times because her heart rate was racing.

KUALA LUMPUR, July 22 – More than two years since the start of the Covid-19 pandemic, scientists and medical experts are still working to find out what causes long Covid and how it can be treated.

The World Health Organization (WHO) says long Covid or post-Covid conditions occur three months from the onset of Covid-19 and lasts for at least two months. The United States’ Centers for Disease and Control and Prevention (CDC) defines long Covid as the returning or continuation of symptoms at least four weeks after the initial Covid-19 infection.

Common symptoms include fatigue, shortness of breath, and brain fog. However, long Covid patients have also reported other unusual symptoms such as sexual dysfunction, shingles, memory loss, and blurred vision.

For Revathi M. Murugappan, a traditional dancer and a health journalist at The Star, long Covid meant experiencing prolonged gastrointestinal symptoms like diarrhoea and nausea months after her initial Covid-19 diagnosis.

Revathi had been suffering from irritable bowel syndrome (IBS) prior to her Covid infection. It has been suggested that Covid can exacerbate pre-existing health conditions.

“When you have Covid and you have diarrhoea, they (doctors) will tell you not to take the diarrhoea pills because the diarrhoea will stop the virus from getting on the body. 

“I couldn’t take any diarrhoea pills, so post-Covid, my diarrhoea continued for six weeks. It was just a nightmare when I think about it,” Revathi said at a panel session at BFM’s Health and Living 2022 “The Next Normal” Live by AIA Vitality in Kuala Lumpur on June 18.

Revathi also continued to suffer from palpitations and nausea, two weeks after she was discharged from the University Malaya Medical Centre following treatment for Covid-19.

In the weeks that followed, she consulted many specialists, including a gastroenterologist, a psychologist, and an infectious disease specialist – but with more than 200 symptoms, many physicians find long Covid hard to diagnose.

“Then I started doubting myself. I thought maybe it was in my head. But I mean, I’d raise my hand up and my heart was 118, and you’re looking at someone, not to brag, whose resting heart was 53. That’s how fit I was,” Revathi said.

A normal resting adult heart rate ranges from 60 to 100 beats per minute. In general, a lower heart rate at rest implies more efficient heart function and better cardiovascular fitness.

“It’s very, very frustrating when you want to exercise, you are an exercise person, and then you’re wondering what’s happening to my body,” Revathi said.

The Long And Unclear Road To Recovery

Panel session on long Covid at BFM’s Health & Living Live 2022 by AIA Vitality held in Kuala Lumpur on June 18, 2022. From left to right: Tee Shiao Eek (Presenter, Health & Living, BFM89.9); Prof Dr Norlinah Mohamed Ibrahim (Consultant Neurologist, Hospital Canselor Tuanku Muhriz UKM); Dr Helmy Haja Mydin (Head, Lung Centre, Pantai Hospital Kuala Lumpur); Revathi M. Murugappan (Long Covid patient). Picture courtesy of BFM.

Revathi is one of many long-haul Covid patients who remain sick and are in desperate search of answers. Despite the many long Covid treatment clinics and rehabilitation centres that have opened up all over Malaysia, there is still little consensus on how to treat it.

According to Revathi, her post-Covid experience also involved various tests to assess her persistent symptoms, including a VO2 max (maximum oxygen uptake) test that measures the amount of oxygen a person consumes during intense exercise. 

“It’s like a stress test, but the only thing is you are strapped to the mouth where they measure your oxygen uptake – and I failed. Within maybe five minutes, from the first to second level, my heart rate went up to 167 and the doctor was very shocked because he knows me as someone who is very fit, so he knew something was not right,” Revathi said.

“Unfortunately, at the government hospital, you can’t see the next specialist immediately. You have to wait,” she said. In between the tests, Revathi continued to work. 

“I still had to work. No one was going to give me a medical certificate (MC) month after month, but nobody was telling me which doctor I should go to as well,” Revathi said. 

“I was very fortunate that one of the persons I was interviewing was a rehabilitation physician and when she spoke about long Covid rehabilitation, everything she said ticked the boxes for me,” Revathi said. “That was when I shared my story with her.”

It was then that Revathi was introduced to post-Covid rehabilitation.

What started as a twice a week session quickly became a weekly session as each visit  resulted in a lot of strain that would “put her out” for a week. “I couldn’t get up. I literally couldn’t get up, and I tell you, it was just an easy exercise. 

“It was just sit and stand, five times. And then I would rest for 10 minutes because my heart rate was racing, and then one or two other exercises, and then we did the spirometer.

“The first time I did the spirometer, the doctor said, ‘my 93-year-old mother-in-law has better lung capacity than you’, but I said my lung X-ray is clear. She said the X-ray is clear but the function, something is not right,” Revathi said.

“So I’m still doing the spirometers. It’s been six and a half months, and I’m much better thankfully. Thanks to rehab.”

The Struggle To Define Long Covid

Respiratory physician Dr Helmy Haja Mydin, who heads the Lung Centre at Pantai Hospital Kuala Lumpur, speaking at a BFM Health and Living 2022 “The Next Normal” panel session in Kuala Lumpur on June 18. Picture credit: BFM Radio’s Facebook page.

Respiratory physician Dr Helmy Haja Mydin, who heads the Lung Centre at Pantai Hospital Kuala Lumpur, described Revathi’s case as “emblematic” of how much remains unknown about long Covid, though he was quick to note that it shouldn’t be dismissed or taken lightly.

“There are different manifestations of the disease,” Dr Helmy said. “One of the key concepts behind long Covid where people feel very tired, drained, fatigued is that the system doesn’t stop – they’re constantly switched on and this is something that a lot of studies have identified as being key factors on why you’re feeling the way you do.

“One of the biggest challenges is that it’s a very subjective thing. If you go to 10 doctors, there is no way for them to kind of say she gets a vaccine or not, or there’s no way, no objective measurement like the lung function test. 

“The lung function test where you breathe tells what your lung strength is, but that alone doesn’t tell you how you’re feeling very fatigued as an individual.

“Even when you breathe, it’s not just about whether there’s any damage to the lungs itself, but the muscles are a key factor on how you breathe and you can have muscle fatigue or a diaphragm infection – things which are not easily captured.

“So when you don’t capture something easily, you can see how it is difficult to treat something properly, how to identify the problem, how to do studies on it, because everyone is doing things very differently,” Dr Helmy said.

He said the complexity of long Covid has resulted in some doctors dismissing patients, especially when nothing shows up on standard tests.

“That’s when you’ll end up seeing doctors or health care workers who think, ‘It’s all in your mind, I can’t find anything wrong with you so therefore, something is wrong with you upstairs’ and it’s a rather paternalistic, lazy way of expressing something that we don’t understand.

“I think one thing that Covid has taught us is we need to be very humble with our knowledge, whether it’s Covid or long Covid, we have to recognise what we don’t know and look into these issues and as time goes by, then we start to see things that do work,” Dr Helmy said.

However, he cautioned that not all post-Covid symptoms are linked to long Covid.

“We can get, for example, myocarditis or inflammation of the heart when you are infected with Covid, but at the same time, if you have an underlying heart disease, that can trigger your angina. So, we have to make sure that whatever is underlying is also adequately addressed and you’re not missing out on anything. 

“One example I’ve had is this guy who has been suffering since December and it was only last month that he had a more thorough investigation and found out that he, in fact, had infective myocarditis, which is an infection of the heart,” Dr Helmy said.

“So I don’t think, on one hand, we must not dismiss long Covid. On the other hand, we must not be quick to place the blame on it every time we see a patient who is not getting better.”

Chances Of Recovery High Over Time

Prof Dr Norlinah Mohamed Ibrahim, consultant neurologist at the Hospital Canselor Tuanku Muhriz UKM (HCTM), speaking at a BFM Health and Living 2022 “The Next Normal” panel session in Kuala Lumpur on June 18. Picture credit: BFM Radio’s Facebook page.

Prof Dr Norlinah Mohamed Ibrahim, consultant neurologist at the Hospital Canselor Tuanku Muhriz UKM (HCTM), said for some cases, Covid may “unmask” underlying conditions that a person may have.

“What Covid does is it taps on certain predispositions that people have. For example, Revathi had IBS. So, the main symptoms that she experienced were gastrointestinal symptoms. For somebody who has a sinus problem, the main symptom may be sinusitis. 

“Similarly, somebody who may have underlying cognitive issues, maybe as they age, they may have, or Covid may unmask that and that’s not to say that everyone that has mental fog or brain fog have underlying cognitive difficulties, but I’m just saying that it could unmask an underlying issue.

“But there’s a spectrum – there’s mild brain fog, severe ones – so what we need to do is we need to rule out, as Dr Helmy pointed out, we can’t just attribute everything to long Covid. We need to investigate. Sometimes we may need a scan or do a follow up with patients.

“But most of the time, for mental fog, they will recover. Some patients may not require rehabilitation at all. Some patients recover on their own, they exercise. Data shows that for mild long Covid symptoms, patients will normally recover with time,” Dr Norlinah said.

Citing data from Malaysia’s main hospital for Covid-19 treatment and rehabilitation, Sungai Buloh Hospital (HSB), Dr Norlinah said statistics show that patients will recover over time.

“We don’t know how long it (recovery) will take. But I would like to give a positive kind of message here because data have shown that patients recover over time.

“This is data from our HSB rehab which actually received the largest post-Covid patients. In fact, over the past year, they’ve treated up to 7,000 patients and over time, they recover. 

“But some patients may require rehabilitation and some don’t. It’s just that we need to get them into rehabilitation early, if they require it,” Dr Norlinah said.

Dr Helmy added that while it is difficult to determine if an individual will recover from long Covid, from a cohort perspective, a high percentage of people will get better.

“I was going to say that it may be difficult to say for the individual, but as Prof (Dr Norlinah) said, as a whole, the majority of patients do recover, especially after six months and by 12 months, probably 90 per cent will recover. 

“But it’s difficult to say for the person in front of you that you’ll be okay in six months because we don’t know which pathway or which spectrum the individual is heading towards,” he said.

For Revathi, while she is optimistic about getting better, the road to full recovery seems a distance away. 

“I’ve sort of accepted it (recovery takes six to 12 months) because it has been six and a half months now and I can see that I’m maybe 50 to 60 per cent better? So hopefully, in the next six months I will be 100 per cent, I don’t know,” Revathi said.

BFM’s Health and Living conference by AIA Vitality also provided a long Covid kit and mental health kit.

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