Welcome to the rapidly developing world of Long Haul Covid. With all their usual linguistic finesse, science calls it Post-Acute Sequelae of Covid-19 (PASC), or (much simpler) chronic Covid syndrome (CCS) orLong Covid Syndrome (LCS). The press and the public simply refer to this growing list of chronic aches, pains, and symptoms as Long Covid or Longhaul Covid.
This article will examine all the most common symptoms in-depth and offer advice to those who are hesitant to seek out treatment.
The million-dollar question. With so many varying symptoms, ranging from leg pain and breathing difficulty to brain fog and depression, healthcare is still trying to get a proper feel for the after-effects of Covid in certain individuals. Here are a few key facts you should keep in mind.
So, about those symptoms. Pull up a chair, it’s a long and growing list and you can expect additional symptoms to be added to this list over the coming months and some to fall away as our understanding of the condition improves.
In the 2020 study referenced above, the following was found among 3,762 respondents from 56 countries. We’ve used this report as the basis for this article as it encompasses the broadest set of symptoms we’ve seen described and contains more detail than other reports.
Prevalence of 205 symptoms in 10 organ systems was estimated in this cohort, with 66 symptoms traced over seven months. Respondents experienced symptoms in an average of 9.08 (95% confidence interval 9.04 to 9.13) organ systems. The most frequent symptoms reported after month 6 were: fatigue (77.7%, 74.9% to 80.3%), post-exertional malaise (72.2%, 69.3% to 75.0%), and cognitive dysfunction (55.4%, 52.4% to 58.8%). These three symptoms were also the three most commonly reported overall
To best describe the findings in this cohort we’ve dissected the graphs published in the report and reproduced them below, as per the reports license Attribution-NonCommercial 4.0 International (CC BY-NC 4.0). We’ll start with the neuropsychiatric symptoms (brain and mood-related). Bars represent the percentage of respondents who experienced each symptom at any point in their illness and are divided into nine sub-categories. When all rows in a given panel use the same denominator, the first row, labeled “All,” indicates the percentage of respondents who experienced any symptoms in that category. Error bars are 95% confidence intervals. Base scale is prevalence (in percentage)
Nest, we’ll move on to the non-neuropsychiatric symptoms. In other words, everything to do with the rest of the body, but excluding the brain. Bars represent the percentage of respondents who experienced each symptom at any point in their illness. Symptoms are categorized by the affected organ systems. When all rows in a given panel use the same denominator, the first row, labeled “All,” indicates the percentage of respondents who experienced any symptoms in that category. Error bars are 95% confidence intervals.
As the lists of possible symptoms are lengthy, we’ve summarized them below and you can view prevalence for each in the linked report. To simplify finding your symptoms, we have again separated these as per the report and graphics above, neuropsychiatric symptoms are shown first followed by non-neuropsychiatric.
Memory symptoms, cognitive dysfunction, and the impact of these on daily life were experienced at the same frequency across all age groups. Of those who experienced memory and/or cognitive dysfunction symptoms and had a brain MRI, 87% of the brain MRIs (n=345, of 397 who were tested) came back without abnormalities.
Those who spoke two or more languages had changes to their non-primary language. Speech and language symptoms occurred in 13.0% of respondents in the first week, increasing to 40.1% experiencing these issues in month 4. 38.0%of respondents with symptoms for over 6 months reported speech and language symptoms in month 7.
Tingling, prickling, and/or pins and needles were the most common at 49% of respondents. Refer to Supplemental Table S3 (shown below) for the most commonly affected anatomical locations.
78.6% of respondents experienced difficulty with sleep. The table below lists each type of sleep symptom, as well as the percentage of respondents with that symptom who also listed it as pre-existing (before COVID-19 infection).
Headaches were reported by 77.0% of participants, with the most common manifestations being ocular 40.9%, diffuse 35.0%, and temporal 34.0%. 24.0% of respondents reported headaches after thinking/mental exertion and 23.0% experienced migraines. Of those experiencing migraines, 56.4% did not list migraines as a pre-existing condition. 46% of all respondents reported headaches during week 1, 54% of respondents experiencing symptoms in month 4 reported headaches in month 4, and 50% of respondents experiencing symptoms in month 7/reported headaches in month 7.
Of those who reported anxiety, 61.4% had no anxiety disorder prior to COVID. Of those who reported depression, 55.0% had no depressive disorder prior to COVID.
Phantom smells were accompanied by a write-in question asking for a description of the smells, in which the most common words were “smoke,” “burning,” “cigarette,” and “meat.” Changes to smell and taste were more likely to occur earlier in the illness course, with 33.2% occurring in week 1. 25.2% of respondents with symptoms for over 6 months experienced changes to taste and smell in month 7.
The most common hallucination reported was olfactory hallucinations 23.2%, mentioned above. Visual hallucinations were reported by 10.4% of respondents, auditory hallucinations by 6.5%, and tactile hallucinations by 3.1%.
3.0% (113 respondents) experienced a continuous fever (>100.4F) for 3 or more months, and 15.0% (563 respondents) experienced an elevated temperature, continuously, for 3 or more months. Skin sensations of burning, itching, or tingling without a rash were reported by 47.8% of respondents.
Sexual dysfunction occurred across genders, experienced by 14.6% of male respondents, 8.0% of female respondents, and 15.9% of nonbinary respondents. 10.9% of cis male participants and 3.2% of nonbinary participants reported pain in testicles.
Cardiovascular symptoms were more common over the first 2 months than in later months. Even so, 40.1% of respondents with symptoms for over 6 months experienced heart palpitations, 33.7% experienced tachycardia, and 23.7% experienced pain/burning in the chest in month 7.
To screen for POTS, participants were asked whether they had the ability to measure their heart rate, if their heart rate changed based upon posture, and if standing resulted in an increase of over 30 BPM. Of the 2,308 patients who reported tachycardia, 72.8% (1680) reported being able to measure their heart rate. Of those, 52.4% (570) reported an increase in heart rate of at least 30 BPM on standing.
Musculoskeletal symptoms were common in this cohort, seen in 93.9%. In month 7, chest tightness affected 32.9% of month 7 respondents and muscle aches affected 43.7% of month 7 respondents
20.3% of respondents (n=765) reported experiencing changes in sensitivity to medications,
Since being infected with SARS-CoV-2, 2.8% of respondents reported experiencing shingles (varicella-zoster reactivation), 6.9% reported current/recent EBV infection, 1.7% reported current/recent Lyme infection, and 1.4% reported current/recent CMV infection. Detailed results are shown in the table below.
28 symptoms were defined as symptoms of the head, ears, eyes, nose, and throat (graphic above). All respondents experienced at least one HEENT symptom. A sore throat was the most prevalent symptom (59.5%) which was reported almost twice as often as the next most prevalent symptom, blurred vision (35.7%). Within this category, symptoms involving vision were as common as other organs. Notably, 1.0% of participants reported a total loss of vision (no data on the extension and duration of vision loss were collected).
Ear and hearing issues (including hearing loss), other eye issues, and tinnitus (ringing in the ears) became more common over the duration studied. Tinnitus, for example, increased from 11.5% of all respondents reporting it in week 1 to 26.2% of respondents with symptoms for over 6 months reporting it in month 7.
Dry cough was reported by half of the respondents in week 1 (50.6%) and week 2 (50.0%) and decreased to 20.1% of respondents with symptoms for over 6 months in month 7. Shortness of breath and breathing difficulties with normal oxygen increased from week 1 to week 2 and had a relatively slow decline after month 2. Shortness of breath remained prevalent in 37.9% of respondents with symptoms in month 7.
Of respondents experiencing symptoms after month 6, 20.5% reported diarrhea and 13.7% reported a loss of appetite in month 7.
COVID toe, petechiae, and skin rashes were most likely to be reported in months 2 through 4 and decreased thereafter.
The survey asked participants whether they have experienced “worsening or relapse of symptoms after physical or mental activity during COVID-19 recovery”. Borrowing from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) terminology, this is referred to as postexertional malaise (PEM). 89.1% of participants reported experiencing either physical or mental PEM.
For some respondents the time PEM started varied. A high number of the respondents with PEM (68.3%) indicated that the PEM lasted for a few days. For physical exertion, the mean severity rating was 7.71, and for mental exertion, the mean severity rating was 5.47.
Now you know the possible effects of LCS the next question on everyone’s mind is an obvious one. Is this permanent or do people recover, and if they do, what sort of time frames are we looking at.
These are both difficult questions, particularly as we are still only getting to grips with the condition and we don’t have a long enough frame of reference yet to answer the question definitively. Obviously, the degree to which your organs have been affected, pre-existing conditions, and the type of symptoms you exhibit all play a role. Let’s look again at the cohort from the report above.
Patients with Long COVID can experience relapsing-remitting symptoms. A minimum of 85.9% of respondents reported experiencing relapses. Respondents characterized their relapses as occurring in an irregular pattern (52.8%) and in response to a specific trigger (52.4%). The most common triggers of relapses, or of general worsening of symptoms, that respondents reported were
Heat and alcohol were other triggers of relapse. Triggers that were written in by respondents included food with sugar and high histamines (reported by 70 respondents); lack of sleep or rest (64 respondents); cold air (39 respondents); overworking or schoolwork (28 respondents); smoke, pollution, and chemical odors (24 respondents).
Approximately half (51.7%) of respondents indicated that their symptoms have slowly improved over time, while 8.9% indicated that their symptoms have gradually worsened and 10.8% have had symptoms rapidly worsen over time.
Only 164 out of 3762 participants (4.4%) experienced a temporary break in symptoms. The remaining participants reported symptoms continuously, until symptom resolution or up to taking the survey. A total of 2454 (65.2%) respondents were experiencing symptoms for at least 6 months. For this population, the top remaining symptoms after 6 months were primarily a combination of systemic and neurological symptoms. Over 50% experienced the following symptoms:
In addition, between 30%-50% of respondents were experiencing the following symptoms after 6 months of symptoms:
Again, let’s examine the data from the cohort. Most patients (83%) reported at least one pre-existing condition. The most commonly reported pre-existing conditions were;
Other conditions of note include acid reflux (12.2%), irritable bowel syndrome (12.9%), vitamin D deficiency (11.8%), obesity (10.7%), hypertension (9.1%), hyperlipidemia (7.4%), and myalgic encephalomyelitis / chronic fatigue syndrome (2.5%).
In the United States, the prevalence of asthma in the general population is 7.7%. While this cohort is not representative of the U.S. population, the prevalence of asthma (17.07%) should be noted.
We’ve added these, not to concern you, but to allow you a deeper understanding of the extent to which LCS can affect your life and if you’re experiencing these symptoms, to assure you, you not losing your mind. We strongly urge you to seek help from a trusted medical practitioner who is knowledgeable in the field of LCS.
“mother has started to help me take the medications I’m on because I can’t remember if I’ve taken them immediately after having the bottle in my hand”
“was trying to fill out a mortgage application form and couldn’t remember our rent. I put £3750 a month. My partner said, no it’s £1375. So I put £13750. My partner said no, so I tried several more times — I was just guessing numbers”
“sitting on the toilet to pee and had to stop for a second to think if I was really there and not about to pee myself or the bed”
“don’t remember what I did in March or April up until the last week of April. I had almost nothing on my schedule. I don’t know what I did”
“put food on the gas stove and walked away for over an hour, only noticing when they were smoking/burning”
“forget how to do normal routines like running a meeting at work”
“felt lost driving and had to stop and find my position in a GPS to be able to drive back home. It’s a route I have done hundreds of times”
“have trouble comprehending new ideas”
“can’t hold multiple trains of thought […] If I tell myself I have to water my plants, I must do it before another thought comes into my mind because otherwise, I will forget”
“can’t follow plots in movies or tv shows, have to write everything down, have to remember to look at notes”
“had to terminate many phone calls because I could no longer comprehend the speakers nor communicate clearly with them”
“used to do the New York Times crossword puzzle every single day and I can’t even manage the mini ones now”
“can’t focus on reading complex texts, and it makes me feel very tired to do that”
“Found that I had become dyslexic — and knew it was happening at the time, could not remember how to spell words — also found I was missing words from sentences and sometimes writing things that did not make sense”
Medika’s advice on this is no. Your first port of call should be a doctor qualified to recognize the symptoms of LCS. The right provider can assist you with an appropriate treatment strategy without necessarily resorting to psychotropic drugs and antidepressants which can have serious long-term implications for your mental health.
First, explore the probable diagnosis of LCS with a qualified medical practitioner, particularly if you’re experiencing a number of the symptoms listed above.
If you would like to share your personal experiences of LCS, we encourage you to use the form below and we’ll add your voice to the conversation.
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