Long COVID
Very severe → no benefitIll for 22 monthsNeeds ongoing treatment
Long COVID: unable to eat without severe pain, still as ill a year later and heavily medicated
- Condition
- Long COVID
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 22 months
- Last post
- Oct 2022
In their words
- Condition: Long COVID
I have lots of issues from LC since first infection in December 2020.
In context ↗ - At worst: Very severe
I have very severe LC in other ways
In context ↗ - Now: No benefit
I am exactly as sick as I was a year ago in the hospital
In context ↗ - Began after: COVID
I had a severe initial infection that messed up my lungs primarily for the first 4 months
Read from 17 of their posts and comments; links to the 10 this page draws on
Summary
After a December 2020 COVID infection wrecked her lungs and nervous system, this 22-year-old woman's lung symptoms eased with an inhaler by April 2021. Since May 2021 she has been unable to eat without severe pain, and a stomach flu in June 2021 led to 11 ER/ICU visits through July. Gabapentin eased her nerve pain and tinnitus but caused mental health side effects, so she switched to pregabalin. By August 2022 she was as ill as a year before, heavily medicated.
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What they tried
Also tried
Gabapentin· HelpedPregabalin (Lyrica)· HelpedInhaler· HelpedHeavy pain meds· HelpedCBD (isolate tinctures, gummies, vapes)· HelpedOTC ear drops· HelpedSteam from a mug of boiling water held to each ear· HelpedBandana/headscarf/thick headband covering the ears· HelpedHormonal IUD· HelpedMuscle relaxers· Not saidSteroids given by ENT· Not saidCannabis (THC, marijuana)· Not said
Their words about each treatment
- Muscle relaxers · Not said
my doc switched me to meds for nerve pain instead of muscle relaxers
In context ↗ - Gabapentin · Helped
I started on Gabapentin and saw my energy levels increase and my nerve pain (primarily in my stomach and intestines) decrease very quickly. ... Gabapentin really helped with my tinnitus.
- Pregabalin (Lyrica) · Helped
now I’m slowly building up a dosage of Lyrica and I think it’s helping my tinnitus a little bit already
In context ↗ - Steroids given by ENT · Not said
An ENT then gave me some steroids, but the ear issues have kind of just hung around.
In context ↗ - Inhaler · Helped
4 months after infection, I got a prescription for an inhaler that really helped ... my lung issues are largely gone!
- Heavy pain meds · Helped
I’ve been relying on heavy pain meds ever since ... heavily-medicate now to keep the pain sort of dulled
- CBD (isolate tinctures, gummies, vapes) · Helped
CBD is helpful for me to fall asleep because my LC nerve pain keeps me up. ... And CBD is huge for my mental health right now.
- OTC ear drops · Helped
OTC ear drops aren’t perfect but they do help.
In context ↗ - Steam from a mug of boiling water held to each ear · Helped
My fastest relief comes from filling a coffee mug with boiling water and holding the steam up to each ear in turn for a few minutes
In context ↗ - Bandana/headscarf/thick headband covering the ears · Helped
I have taken to wearing a bandana/headscarf/thick headband around my head and covering my ears every day. It has been stopping me from getting overstimulated without having to exit situations.
In context ↗ - Hormonal IUD · Helped
it was actively helping my severe period symptoms and had been for many months
In context ↗ - Cannabis (THC, marijuana) · Not said
I’m allergic to THC
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| December 2020 | COVID-19 infection; lungs and nervous system damaged, narrowly stayed out of hospitalI have lots of issues from LC since first infection in December 2020.In context ↗ | Severe |
| April 2021 | inhaler eased lung symptoms4 months after infection, I got a prescription for an inhaler that really helpedIn context ↗ | Moderate |
| June 2021 | stomach flu; could not digest food; ER/ICU 11 times through JulyIn June 2021 I what doctors told me was a bad stomach flu, and landed in the ER/ICU 11 times through July because I couldn’t digest food.In context ↗ | Severe |
| July 2022 | gabapentin raised energy and cut nerve pain, kept her out of hospital for monthsI started on Gabapentin and saw my energy levels increase and my nerve pain (primarily in my stomach and intestines) decrease very quickly.In context ↗ | Severe |
| August 2022 | still unable to eat without severe pain; as sick as a year before, heavily medicatedI am exactly as sick as I was a year ago in the hospital, only I am heavily-medicate now to keep the pain sort of dulled.In context ↗ | Very severe |
Adverse events
- Gabapentin (Neurontin)“the mental health side effects forced me to come off of it” In context ↗ Mood or psychiatric effects
- “it does make me fall asleep during the day sometimes” In context ↗ Side effects
- IUD (hormonal or copper)“spent 3 days bouncing in and out of the ER with a huge ovarian cyst after the removal ... my hormonal issues are back that the IUD was treating” In context ↗ ER visit
- Cannabis (THC, marijuana)“I’m allergic to THC” In context ↗ Allergic reaction / anaphylaxis
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPain & fibromyalgiaTinnitus
Their words about their symptoms
- Tinnitus
LC gave me tinnitus and the bandana slightly muffles sounds
In context ↗ - Brain fog
dealt with a lot of long covid issues (tinnitus, brain fog, muscle fatigue, etc.)
In context ↗ - Muscle weakness
I got some strength back in my lungs but dealt with a lot of long covid issues (tinnitus, brain fog, muscle fatigue, etc.)
In context ↗ - Breathlessness
However, my lung issues are largely gone!
In context ↗ - Gut problems
I haven’t been able to eat anything without severe pain since May 2021
In context ↗ - Pain & fibromyalgia
still cannot digest food without severe pain
In context ↗ - Neuropathy & tingling
my nerve damage/neurological issues are only getting worse
In context ↗ - Headaches & migraine
it helps my headaches as well to give me slight pressure on my temples
In context ↗ - Light & noise sensitivity
sound contributed to me getting overstimulated more than anything
In context ↗ - Anxiety & low mood
CBD has also been huge in regulating my bad anxiety
In context ↗ - Mast cell (MCAS) & allergies
I’m allergic to THC and I struggle to find CBD without THC added
In context ↗