Internal tremors, buzzing, vibrations, electrical zaps and humming have all been described extensively by those with Long Covid. Many were disbelieved by the medical profession. Finally these symptoms have been documented in "Internal Tremors and Vibration Symptoms Among People with Post-Acute Sequelae of SARS-CoV-2: A narrative review of patient reports" - a preprint, so not yet peer reviewed, in medRxiv on the 3rd December. I have edited it to make it an easier read.
Overall, these patient narratives described intense suffering, and there is still no diagnosis or treatment available.
Long Covid is a condition that is marked by symptoms that vary considerably among its sufferers. There are however specific clusters of individuals who are suffering from similar symptoms. Proper clustering may enable efforts to identify biological signatures that help us understand underlying mechanisms and can guide the development of diagnostics and therapeutic tools and strategies.
Some people with Long Covid manifest symptoms that they describe as vibrations and tremors. To date, these symptoms, as experienced by patients, have not yet been well described. There are reports of patients with myoclonus - a brief, involuntary, irregular twitching of a muscle or a group of muscles. It is a clinical "sign" as doctors can see it. No underlying cause of the myoclonus episodes among patients with Long Covid has been identified.
What was their aim?
The goal of this study was to give voice to the patient perspective and identify a potentially important cluster of similar symptoms that people with Long Covid were reporting.
What did they do?
They uses Survivor Corps, a grassroots COVID-19 patient advocacy group, to gather information from people in their Facebook group suffering from vibrations and tremors. They conducted a qualitative analysis of the responses and organized them according to prominent themes.
What did they find?
After review of the data, respondents’ comments reflected 7 domains that formed the basis of characterizing their experience with vibrations and tremors. Below are examples of the data they recieved from participants:
“Sometimes my entire body feels like it’s humming and trembling. It’s like I’m sitting on a huge speaker with the volume all the way up. Through the progression of the last few months, the complete body humming has slowed down, but still happens 5-8 times a month. My hands and legs also began tremoring about the same time as the whole body. My legs bop up and down aggressively at times. I’m not cold, I’m not restless, but my legs visibly move up and down like I’m tapping my foot. My hands have been the worst of it. I felt like they had improved a few months ago, but they’re back with a vengeance. I’m not hungry ever. I know I need to eat, and my go-to has been soup. By the time I get the spoon 4 inches above the bowl, and close to my mouth, all of the broth has been “shaken” off. My handwriting.. awful. Sometimes I absolutely cannot stand myself and just go to bed. That happens more often than not. I usually try to hide my hands in my pockets or under the table, but am not always able to do that. When my whole body is tremoring, I find it a lot more difficult to focus and to get anything accomplished.”
“I contracted COVID from an ICU patient in May 2020. A few days later terrible headaches, loss smell, lung, cardio, eye damage. Ongoing problems fatigue, Headaches, Migraines, Imbalance, Dizzy, Vertigo, SOB, COPD, Brady/Tachycardia, SVT, chest pain, Gastric, swallow, voice, cognitive, exercise intolerance, several leaves of absences off work. I had many scans, tests, labs with both normal results and damage results. I have all Records. Then few months later unrelenting Neuro issues vibrations, ripples, tremors, became intense foot cramps, painful ankle, foot drop, leg spasms started mostly r foot. I had to wear ankle brace use cane. Very difficult to sleep. Husband could see ripples under skin and feel the vibrations at times. Body is constantly “on”, pain, numb, burning, briar patch, walking on nails, spikes r foot, can’t put r foot flat. Also forearms, hands, r side worse.”
For more validating examples of peoples experiences with tremors, vibrations, buzzing and neuropathic pain please go read the paper in full. See reference below.
These 7 domains were as follows and into these fitted 22 themes:
1. Symptom experience, description, and anatomic location
Theme 1. Vibrations and tremors were described concomitantly, with descriptions of internal vibrations, visible tremors, and some people experiencing both.
Theme 2. Vibration or tremor site varied, from the entire body to localization in extremities, chest, abdomen, and other locations.
Theme 3. Vibrations and tremors occurred with other symptoms of varying number.
Theme 4. Vibrations and tremors could cause severe pain.
2. Initial symptom onset
Theme 5. Vibration and tremor initial onset varied, from the day of initial infection to weeks or even months later.
Theme 6. Vibrations and tremors occurred following or during acute COVID-19 infections that varied from mild to severe.
3. Symptom timing
Theme 7. Vibration and tremor episodes could be brief, or could be prolonged, even constant.
Theme 8. Vibration and tremor episodes could occur constantly, daily, or only when relapses occurred.
Theme 9. Vibration and tremor symptoms could completely resolve temporarily and could return up to months later.
Theme 10. People experienced vibrations and tremors over different time periods (even if they were episodic), and some did not have improvement in symptoms after more than a year.
4. Symptom triggers or alleviators
Theme 11. Exercise and activity were associated for some with onsets of tremors and vibrations.
Theme 12. A variety of self-treatment strategies, such as diet modifications and humming, were used to alleviate tremors and vibrations.
5. Change from baseline health status
Theme 13. People with vibrations and tremors had varying health states before their COVID-19 infection, from those who were completely healthy to those with pre-existing conditions.
6. Experience with medical establishment
Theme 14. Medical testing failed to reveal the mechanism of either tremors or vibrations.
Theme 15. Tremor and vibration symptoms were sometimes doubted or dismissed by doctors.
Theme 16. The vaccine was associated with both improvement in symptoms for some people, and a relapse in symptoms for others.
Theme 17. Medications have been provided for tremor symptoms, with varying results.
7. Impact on people’s lives and livelihood.
Theme 18. Vibrations and tremors were associated with mental health effects, including anxiety, depression, and suicidal thoughts.
Theme 19. Vibration and tremor symptoms caused disability for some people.
Theme 20. Vibrations and tremors could disturb or prevent sleep.
Theme 21. Vibration and tremor symptoms could prevent people from working or carrying out daily life activities.
Theme 22. Vibration and tremor symptoms could cause financial stress, through a combination of medical care costs and loss of income from medical leave.
What did they decide from this?
These findings suggest that a group of people who report experiencing Long Covid exhibit a prolonged and debilitating symptom complex that prominently involves vibrations and tremors. While symptom experiences were different—in symptom timing, medical history, and initial infection, for instance—there were also common themes in how people described these symptoms and their effects. People also reported how testing and medical care have not yet identified possible mechanisms or successful treatment for these symptoms.
The report attempts to add a larger, broader overview of experiences of these symptoms, including symptoms described among individuals who might not have sought medical care.
There are several key implications of the work.
Internal vibrations and tremors are causing severe suffering for a group of people after self-reported SARS-CoV-2 infection.
While the overall scale of these symptoms is still unknown, this group of people experiencing the symptoms have not recovered from the symptoms nor have they received specific diagnoses or been given treatment that completely alleviates their suffering.
The descriptions of feeling internal vibrations and tremor symptoms were similar across this group of patients. The emails were not seen by the other participants.
The Facebook comments Word Cloud revealed that the 10 most common words used in comments were: tremors (64), covid (55), pain (51), vibrations (43), months (36), burning (29), feet (24), hands (22), legs (21), back (20).