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Catherine’s Story

Published 05.10.20

12 March 2020 – On the pavement I passed a runner who was in a bad way. He was gasping for air and was half jogging / half walking – focused on getting back home and not going to stop. I suspected it was COVID-19. At the time we were being told to wash our hands – there was nothing about face covering or social distancing. I could not go on the main road because of traffic. As I passed him on the pavement, I held my breath – but could not hold it long enough. I felt air started to be drawn up my nose. 14 / 15 March I noticed I had sudden wet coughs after eating (particularly chocolate). Also had acid reflux whilst lying down and turning over.

16 March – Dreadful symptoms came on suddenly after having lunch. Raspy sore throat, legs felt like lead, I felt very dizzy, I could not spell when texting, I self-isolated and went to bed. By early evening I had a raspy pain under sternum, and pain in the left side of my chest and left arm as my heart beat – my heart was pounding. All happened very quickly. Day 2 – My chest hurt when breathing and when I got out of bed I could not bend over as there was so much pain in my chest, it was hard talking. Day 3 I felt sick and lost my appetite. Day 4 There was a belt like pain around my lower ribs and pain where my kidneys are.

I was very tired over all this time. I noticed my eyes were always pink in colour. Day 5 – I was relieved when it no longer hurt to breathe, but other symptoms continued. My glands came up and I felt I was fighting the infection okay.

The following week my sore throat returned. I found milky drinks helped make my throat feel less dry. A month later my chest still hurt when I walked and I felt breathless at times. I moved my arms around as I walked outside to get air into my chest. I started again to get palpitations over the weeks that followed and on the advice of my GP stopped drinking caffeine drinks. I had numbness in legs and arms at times – and tried various things like changing my diet – including yeast extract, eating more fish etc. I also had fleeting arthritic type pains in my hands. Things did improve.

Over the months that followed there were days when I felt shaky and my eyes did not focus when doing jobs at home, sometimes I dropped things. Strange things happened for example I would try to read articles by looking at sentences all over the page – finding it difficult to scan down and read a sentence at a time. I would then switch off the computer or put down the book or paper and decide to delay reading until another time. These neurological symptoms passed. I tried to walk as much as possible, using hills nearby to improve my fitness. I sort advice from a physio regarding abdominal pain – back exercises helped.

Now in September, 6 months on, I regularly have night sweats. I sweat after eating, and sometimes when I think about eating (a bit like dumping syndrome). I often feel thirsty and dehydrated – and have a metallic taste in my mouth. I get palpitations at times (particularly if I try a cup of tea or coffee), and chest pains regularly at night in the early hours. I walk a lot and feel energetic for a few days, then feel wiped out for the next week. Bowel movements have changed from being very loose, in the first months after COVID-19, to being hard – even though I have plenty of fibre in my diet. Increasing fluid intake is helping. I’m losing weight (half a stone in a week) but food intake has now increased and weight is more stable. After eating a bit of high energy food, I can sometimes feel much better.

I have been saddened by the lack of good information on websites across the world, both on the breadth of COVID-19 symptoms, and also results of research into Long-covid. Provision of the physiological reason for each Long-covid symptom would be helpful – with hints on how to overcome each. Thanks for all you are doing at Covid-19 Recovery Collective to rectify things and to share information openly.

June 2022 Update

In November 2020 the kidney pain that I had during covid returned. My dryness symptoms (e.g. thirst and dry eyes) got worse and I became photosensitive. An Antinuclear Antibody (ANA) test came back strongly positive. In April 2022 I was diagnosed with Undifferentiated Connective Tissue Disease. I am now taking hydroxychloroquine which seems to be helping with some of my symptoms. I have been helped by Lupus UK and by their online HealthUnlocked Forum.

I’m relieved that there is research that is now helping to explain my symptoms. An example is that being undertaken at Dell Medical School, University of Texas – Austin.

A clear account of the possible basis of neurological symptoms of long covid is given 26 minutes into the following talk by research director Esther Melamed, MD.

Post-COVID-19: The Long Haul of the Pandemic, UT Health Austin Webinar, September 27, 2021

July 2022 Update

Long-COVID Patient Education – July 11, 2022, 11 minutes in

W. Michael Brode, MD discusses Long COVID-19 as part of the enduring pandemic. As the medical director for the Post-COVID-19 Program at UT Health Austin, Dr. Brode and his team work together to diagnose and treat patients experiencing long-COVID symptoms through his comprehensive, multidisciplinary model of care.