Long COVID, sometimes called Post-COVID or Long Haul, is rather difficult to define. Essentially it is symptoms that either continue beyond the normal recovery time for COVID (which varies depending on the severity of the infection) but it could also be symptoms that return or begin weeks or months later that have no other cause.
These symptoms may begin at some point during recovery, but they may also show up weeks and months later. In some people the symptoms are ongoing and in some they come, go, and change – meaning they have different symptoms at different times for no apparent reason.
While it impacts many people who had severe cases of COVID, it also impacts those who were asymptomatic or who had very mild cases.
It can be tricky because there are so many symptoms that correlate to it, but it affects everyone differently. Some people only experience severe symptoms on occasion, others experience symptoms all the time. Some people have mild symptoms that only occasionally disrupt their normal day-to-day lives, and others are nearly completely incapacitated. Some individuals go through periods where they cannot function without help and then other periods where they are okay; and still, others struggle with symptoms all the time.
One article suggests that there are at least 55 symptoms currently associated with Long COVID. Here is a list of some of those:
- Fatigue that interferes with normal life activities or after physical/mental activity
- Intermittent fever
- Shortness of breath or difficulty breathing
- Persistent or intermittent cough
- Chest pain or tightness
- Heart palpitations (pounding heart)
- Rapid heart rate (tachycardia)
- Brain fog (difficulty thinking or concentrating)
- Headache
- Sleep problems
- Dizziness
- Pins and needles sensations
- Change in smell and taste
- Depression and/or anxiety
- Digestive issues (diarrhea, constipation, stomach pain)
- Joint/muscle pain
- Rashes
- High blood pressure (new hypertension)
- Low blood oxygen
- Difficulty losing weight (due to metabolic impact)
- Inability to stop losing weight (due to changes in appetite)
- Difficult with motor function or speech
- Sore throat
- Chills
- Vomiting
- Urgent bowel movements/bowel incontinence
- Earache
- Ringing in ears or hearing loss
- Nausea
- Hair loss
- Sweating
- Attention difficulty
- Increased resting heart rate
- General pain
- Sleep apnea
- Chills
- Pulmonary fibrosis
- Arrhythmia
Again, not everyone has all these symptoms, and the symptoms can come, go, and change over time. So someone may have a handful of these symptoms and then new symptoms may start and others may improve (or not).
This means the landscape of the life and health of those experiencing Long COVID is ever-changing. And it’s frustrating for everyone involved because so many people just don’t know what to expect and there are more questions than answers.
Long COVID seems to defy everything you might think of when dealing with illness. Pushing through often makes symptoms worse. Where you might think walking and doing cardiovascular exercise to strengthen the heart and lungs would be helpful, quite often it’s exactly the opposite and can cause a relapse or worsening symptoms. The body simply can’t handle the stress of the activity. And stress is a huge trigger for new and worsening symptoms as well as relapse to symptoms that had appeared to be resolved.
Some studies claim that Long COVID creates a dysregulation of the Autonomic and Central Nervous Systems, causing bodily systems to miscommunicate with one another and stopping them from operating in harmony. The parasympathetic nervous system, which is responsible for the fight or flight responses, seems to be in overdrive; while the sympathetic nervous system, responsible for rest, digestion, and recovery is underresponsive. This dysregulation not only creates chaos in the mind and bodily functions but also means that organs may appear normal in tests but misfire in real life because of the messages being sent from the nervous system.
With a medical system that is just learning about Long COVID and many doctors unaware of the many possible components of it, patients have to advocate for themselves and learn as much as possible on their own in order to educate their primary care providers. Those who are blessed to have a knowledgeable care team still must do a tremendous (and exhausting) amount of work educating their friends, families, and communities if they are going to get the support they need, adding more stress to an already stressed nervous system.
The inconsistency and unknowns are all part of the difficulty of living with Long COVID. Not knowing from one moment or one day to the next what you will be capable of and what will take you out for days or weeks is challenging. It makes it difficult to make plans, attend appointments, to participate in normal activities. And it can leave people feeling lazy, disengaged, and unreliable, even though they are none of those things.
Imagine, one day you appear to be functioning normally. You can clean, hold conversations, and maybe even go to work. The next day you burst out in tears as your feet hit the floor because of the pain shooting through every muscle, as another fever and headache ravage your body. When you finally recover, sometimes days or weeks later, you find yourself exhausted and incapable of putting sentences together or getting in and out of the bathtub by yourself. This is what life can be like for someone with Long COVID.
And, for those who had severe cases of COVID and were hospitalized or in the Intensive Care Unit for treatment, symptoms may be compounded by Post-Intensive Care Syndrome (PICS). This can include difficulty thinking clearly, challenges with judgment, muscle weakness, and symptoms of Post-Traumatic Stress Disorder.
As the world celebrates the declared end of the pandemic, the 1 in 13 adults in the US affected by Long COVID are still figuring out how to function. There are few answers. It’s too new. No one can even say, “Here is how long it’s expected to last” because it varies by person and severity; or “Here is a path to getting better,” because it manifests differently in different people and each person responds differently to the options and every option feels like a shot in the dark.
COVID brought about unprecedented levels of isolation and disconnection; Long COVID only widens the gap between those who are well and able to go about their daily lives and those who are living in a continual state of the unknown and uncertain, not just in their health but in every area of their lives.
Following are some of the articles used in the writing of this post:
https://www.cognitivefxusa.com/blog/does-covid-affect-your-nervous-system
