My Journey with Covid-19 Long Haul Symptoms

By Lynne Pinterics

As a member of the Wellness Group, I am sharing my Covid 19  journey with post-Covid -19 long term effects with you, with some trepidation, in order to deepen understanding of this tricky virus in this wonderful coop community, so that we all can continue to keep ourselves and others safe by following all the protocols inside the coop and outside of it.  

Everyone has an understandable degree of anxiety about ourselves and loved ones contracting Covid 19, and grief and sadness about how this virus has changed our lives and the world as we knew it. However, only recently, has there been more information and research indicating that approximately 10% of people who have had mild to medium Covid-19 and were not hospitalized, experience persistent prolonged symptoms, and have not regained their pre-Covid health months later. This includes many younger people who were very physically fit and active before becoming ill. The impact of these longer-term effects adds another layer to the psychological effects of this illness. The general public is only gradually learning about these concerning effects through the media interviewing “long haulers”, after physicians who were long haulers themselves, presented to the World Health Organization resulting in the WHO prioritizing funds for research and physician education and awareness worldwide. 

My story began when I travelled to Edmonton on March 6, 2020, to visit and support my daughter who had a recent severe concussion. News of the virus was just beginning to surface. I became ill on the fifth day of the visit, with headache, nausea, dizziness, and fatigue. After returning home, I was very ill for two weeks, with additional symptoms of fever, muscle aches, swollen lymph glands, sore throat, dry cough, and heavy pressure on my chest. I took the online Covid-19 assessment, and, as I had not travelled outside of Canada within the last couple of weeks and was able to breathe (although with difficulty), I was not eligible for testing, and so isolated at home.  By the time the testing criteria changed, and I was eligible, I tested negative. I have subsequently learned that unless the testing is done during the acute two-week period, the results will probably be negative, and even then, there is a 30% chance of a false-negative result.

After two weeks, the symptoms were less acute, and I thought I was recovering from the virus for a few weeks. To my surprise, the symptoms increased again with new ones added.  As time went on, my symptoms would diminish, and I would think I was getting better. I would begin to do a few more things in my daily life and then the symptoms would intensify again, with some of the same, plus new, and different symptoms. My life as I knew it has changed. I went from being someone who slept well, woke early and full of energy, and enjoyed a busy active life. Instead, throughout the last seven months, any exertion, whether physical, emotional, or mental, would cause increased coughing and breathing issues, dizziness, cognitive impairment (brain fog), various muscle and bone aches, and fatigue.

The journey with the medical system has been difficult and frustrating, as this virus is new for them, and my general physician, as well as my heart and lung specialists, was often confused and therefore dismissive because of my negative Covid tests. However, they gradually acknowledged I had “presumed” Covid-19 post-viral symptoms.  All their regular test procedures could not explain my myriad of symptoms, other than finding that I now have high blood pressure for the first time in my life, and my heart has a left bundle branch block, but with no underlying causal heart issue. Thankfully, I have a new primary physician who prescribed an asthma puffer four times a day, which is helping my breathing and I gradually have more energy. I also, fortunately, have found two alternative health practitioners who have recommended supplements that seem to be making a difference. I am slowly and gradually improving, and am so thankful for my amazing partner Jean, as well as family, and friends from outside and inside the coop who offered support and connection. I am also grateful to both the Canadian and American long haulers FaceBook group that normalized everything I was experiencing and therefore saved me from feeling totally crazy, hopeless, and depressed during these last seven months.

Scientists are now positing several theories of the long-term symptoms, one related to an immune response causing autonomic nervous system dysregulation which controls physiologic processes such as heart rate, blood pressure, respiration, and digestion. Additionally, they are thinking, that after entering through the lungs, it travels through the vascular system in the endothelial cells lining the blood system, and from there can attack all the major organs, including the brain, resulting in cognitive impairment. Scientists are at this point uncertain if organ damage is permanent, or temporary, but I am believing as I improve slowly, that the endothelial in the vascular system cells can regenerate.

I am reassured that I have not been contagious since the acute phase in March, but I welcome any of you to contact me if you have questions or concerns, or want to understand how to be supportive to others struggling with Covid or post- Covid symptoms. As a member of the wellness committee, I will take to the committee any suggestions you might have regarding ideas for mutual support in our community during this difficult time.   

If you are interested, more information on the recognition and research on post-Covid 19 long haul can be found at the following links:

  1. An excellent video done by a UK physician who is himself a long hauler on Recognition and Research
  2. An American article: Long haulers stump experts
  3. Covid-19 Long haulers
  4. Survival Guides
  5. Covid’s under the radar victims
  6. COVID-19 long-haulers may be experiencing multiple syndromes: NIHR review

 

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