There are several clusters of Long COVID symptoms:
Fatigue, Post-exertional malaise (PEM), and Cognitive fatigue are the three, most common symptoms and are often among the most severe from a patient perspective. Fatigue is a general lack of energy to do things. PEM is a sudden severe lack of energy in response to overexertion. The level of activity that triggers PEM is variable from long-hauler to long-hauler. It can be triggered by sweeping the floor or going for a walk/hike. The PEM “crash” may be immediate or delayed until the next day. Cognitive fatigue can occur gradually or suddenly from carrying on a conversation, listening in a conversation, driving, or watching TV. Any type of sensory information processing can use-up the limited reserves of the Long COVID brain.
The frequency of 36 of the most common patient reported symptoms; data from my 2024 Long Covid Symptom Survey (n=195).
Neurocognitive issues
Commonly called “Brain Fog“, this can be broken out into Cognitive Fatigue, Difficulty Concentrating, ‘Difficulty finding the right word’, Memory issues, Sensitivity to Light, Sensitivity to Noise, and Head Pressure or Headaches may be present as well. Some also report Dissociation; feeling disconnected from their thoughts, feelings, memories, and surroundings.
Sleeping Difficulties – often people mention they are “wired but tired” or they fall asleep ok, but they wake up in the middle of the night feeling wide awake. Some wakeup suddenly in a panic or feeling like they stopped breating. New sleep apnea may occur. Finally, some people sleep too much rather than too little.
Ear, nose and throat
The sensitive hair cells of the inner ear may be impacted resulting in ringing in the ears (tinnitus). Inner ear issues may also cause balance issues or even a “bobble-head” or “seasick” feeling. A persistent runny nose or sinus congestion may be present. Dry mouth from a lack of saliva production is common. A few report a burning tongue or tongue soreness. Swallowing difficulties or even difficulty speaking may be experienced. Loss of taste and loss of smell can persist for months or years in a small percentage of long-haulers.
Eyes
About 65% of long-haulers are reporting new or worse Dry Eyes. For about half it is mild but for almost 30% it is serious or severe. If the dryness affects the surface of the cornea, making it bumpy, it may contribute to blurry vision. 15% report worse floaters in their eyes, 14% report burning eyes, while 10% are reporting eye redness or conjuctivitis.
Anxiety, Irritability, and Depression: of these Anxiety and Irritability are most common.
Vagus nerve issues
The SARS-CoV-2 virus is able to infect the cells of various nerves including the vagus nerve which influences heart rate, digestion, temperature control, other internal organs, sweating and swallowing. Impaired functioning of the vagus nerves likely causes the cluster of symptom known as Dysautonomia. Common dysautonomia symptoms include: Light-heading feeling or dizziness, hot or cold hands and feet, feel bad after eating, rapid heart rate or tachycardia and heart palpitations. A failure to properly constrict blood vessels when standing up may cause sudden dizziness and a sudden increase in the heart rate. If the heart rate increases more than 30 bpm during a 10 minute stand test while the blood pressure remains faily stable, it is often deemed Postural Orthostatic Tachycardia Syndrome (POTS).
Cranial nerve issues
Pressure, soreness or twitching of any of the cranial nerves. Back of head or ‘Base of skull soreness’ is likely the pair of occipital nerves. Blurry vision and double vision issues likely reflect poor functioning of the cranial nerves that control the eye muscles. Sometimes long-hauler’s experience soreness, pain or very sharp pain behind an eye. That likely indicates involvement of the optic nerve. Soreness in the throat area and in the side of the neck are quite common. Muscle twitches in the face and soreness in front of the ear also likely reflect nerve and nerve ganglion involvement.
Muscle and joint issues
Muscle soreness (aka myalgia) and joint soreness / pain is quite common. Sometimes this impacts tendons, sometime specific joints, sometimes specific muscles.
Arm and Leg weakness
Arm weakness and difficulty walking are quite common. This can impact a person’s stability and their ability to navigate stairs. Some need to use a cane or walker or a wheelchair for mobility and safety. Leg weakness combined with balance issues can make mobility within a house or apartment challenging. Some report being mostly bed bound for months or longer.
Other symptoms
Heart pressure, heart aches and rib or chest soreness are common. Shortness of breath may also be experienced, although, a person typically has normal blood oxygen saturation. Pins and needles in feet and hands or numbness may be experienced. General nerve pain may be present. Back soreness or pain is not unusual, sometimes focused in the lower back, sometimes focused in other areas of the spine.
The digestive tract may feel bloated or tight. It may also be very sore or painful. Often this is accompanied by nausea. A few experience gastroparesis where food does not exit the stomach in a timely fashion and they often experience acid reflux as well. Constipation is fairly common, as well, although some experience diarrhea instead. Loose stools, long skinny stools, and even whitish clay-colored stools may occur.
Many report uninary tract issues or more frequent urination and a host of other issues.
The graph below show the frequency of another 37 additional patient-reported symptoms. Only 8% or respondents reported experiencing none of these symptoms. Notice that fever, even low-grade fever, was quite an infrequent symptom in the long-haulers that took this survey. About 10% reported ‘No taste or altered taste’ a symptom that has been clearly linked to SARS-CoV-2 viral persistence in the taste buds of the tongue. Some symptoms such as fever and loss of taste and smell are likely more common with acute covid or during the initial months of Long COVID symptoms.
Long COVID Severity Scores
The distribution of the Long COVID Severity scores shows a wide range of scores, from 2 to 139. Respondents rated the severity of 36 common symptoms based on the following scale: 0 = none, 1 = mild, 2 = moderate, 3 = serious, 4 = severe. An additional 37 symptoms are assessed at 1 point each. Sixteen percent of repondents had a score of 90 or above while seventeen percent had a score of 29 or less. The average score is 59. For men the average is 53 while for women the average is 62. One third of respondents are male while two thirds are female.
Number of Symptoms
The average number of patient-reported symptoms is 30. 25 of the 36 common Long Covid symptoms with an additional 5 of the check-box symptoms. Unfortunately, that is a LOT of symptoms!
Patient-reported symptoms can be very useful to track the severity of your Long COVID over time. If you wish to try this, click on the link below to access the ‘Score my Long Covid / Long Vax symptoms’ survey in Google Forms. After completion, you will be e-mailed a copy of your survey.
https://forms.gle/V9QbpbPL5dh8CKYbA
Not surprisingly, there is a rough correlation between the number of patient reported symptoms and the Long Covid Symptom Severity Scores. On average, the Long Covid symptom severity score is about twice the number of symptoms (2 = Moderate). Clearly, though, for scores above 90, the average symptom severity is worse.
