Long COVID
Moderate → relapsedIll 2.5 years before improving or writingNeeds ongoing treatment
Long COVID nerve pain, buzzing and dysautonomia eased by duloxetine, then relapsed
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2.5 years
- Last post
- Sep 2025
In their words
- Condition: Long COVID
I've had LC since August 2020.
In context ↗ - At worst: Moderate
I was functioning at about 60% capacity before this. Now down to about 20%.
In context ↗ - Now: Relapsed
I'm absolutely convinced that I was on a trajectory bent toward real recovery before I got reinfected, and my doctor agrees. Now I don't know what'll happen from here.
In context ↗ - Began after: COVID
My LC started in August 2020 and is still very much a thing
Read from 23 of their posts and comments; links to the 18 this page draws on
Summary
Moon 30474 has had long COVID since August 2020, with nerve pain, buzzing, dysautonomia, tinnitus and heat intolerance. High-dose duloxetine eased the nerve pain and autonomic symptoms for about 22 months before it began to fail, but caused weight gain and raised cholesterol and blood sugar. Surgery in 2023, a reinfection in 2024 and a 2025 stress flare that left them at about 20% capacity each cost ground; a walk flares them the next day.
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What they tried
Also tried
Melatonin· Helped a lotStaying well-hydrated· HelpedGetting sufficient sleep· Helpedbenzo· HelpedElevating the head of my bed by 6 inches· HelpedSleeping in a cold room· HelpedModerna COVID vaccine and boosters· No changeGradually increasing my activity level· No changeannual flu shot· Worseother meds for neuropathic pain and depression/anxiety· Worseshingles vaccine· Worseabdominal surgery· Much worsetetanus shot· Much worse2.5-month pain program at a hospital· Not said
Their words about each treatment
- Duloxetine (Cymbalta) · Helped a lot
It was like the symptoms never existed for almost 22 months. The problem is, as of recently the drug is starting to fail.
In context ↗ - Limiting sugar intake · Helped
Limiting sugar intake, staying well-hydrated, and getting sufficient sleep also help
In context ↗ - benzo · Helped
My doctor prescribed a benzo to knock me out enough to get past it
In context ↗ - Moderna COVID vaccine and boosters · No change
the Covid vaccine is the only one that doesn't cause me to flare
In context ↗ - annual flu shot · Worse
I have a 2-4 week flare every time I get a flu shot.
In context ↗ - Elevating the head of my bed by 6 inches · Helped
the single best change I've made to my bed is elevating the head by 6 inches. Helps with my gastro symptoms and sleep disturbances, and I have fewer heart palpitations.
In context ↗ - Sleeping in a cold room · Helped
Sleeping in a cold room is another big help, in my case.
In context ↗ - other meds for neuropathic pain and depression/anxiety · Worse
my side effects on other meds for neuropathic pain and treatment-resistant depression/anxiety have been much worse
In context ↗ - abdominal surgery · Much worse
an abdominal surgery in 2023 kicked everything back into high gear and added new symptoms
In context ↗ - tetanus shot · Much worse
Previous severe flares were caused by a surgery, my annual flu vaccine, and a tetanus shot.
In context ↗ - 2.5-month pain program at a hospital · Not said
I was diagnosed with dysautonomia and small fiber neuropathy during a 2.5-month stay in a pain program at a presigious hospital
In context ↗ - Melatonin · Helped a lot
Melatonin never worked for me when I took it an hour or two before bed ... it's actually best to take it 4-6 hours beforehand, and it was a game changer
In context ↗ - Gradually increasing my activity level · No change
Gradually increasing my activity level doesn't help.
In context ↗ - shingles vaccine · Worse
My covid-induced dysautonomia flared up pretty bad after my first shot, too. I still got the second shot, though.
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. The chart starts 2.4 years after onset: the story doesn’t say how ill they were before that. 3 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 23 August 2020 | long COVID onsetfirst LC symptoms appeared 23 August, 2020In context ↗ | Not stated | |
| about a year in (2021) | lowest point of the illness in year oneI didn't regress back to where I was at my worst (about a year in)In context ↗ | Not stated | |
| early 2023 (year three) | significant improvement in year three; duloxetine startedI started seeing significant improvement in year threeIn context ↗ | Mild | Duloxetine (Cymbalta) |
| 2023 | abdominal surgery kicked symptoms back into high gearan abdominal surgery in 2023 kicked everything back into high gear and added new symptomsIn context ↗ | Not stated | |
| October 2024 | lost ground after a second round of COVIDuntil I had my second round of Covid last OctoberIn context ↗ | Mild | |
| February 2025 | stress-induced flare from Inauguration Day, the worst yetI was functioning at about 60% capacity before this. Now down to about 20%.In context ↗ | Severe | |
| September 2025 | still very limited; only some walking on cool, dry days and flared afterwardsI'm pretty wiped out and flared up the day after a walkIn context ↗ | Moderate |
Adverse events
- Duloxetine (Cymbalta)“I also sweat profusely with even modest activity, though some of that is from the Duloxetine I take for LC-induced nerve pain and autonomic dysfunction.” In context ↗ Side effects
- Duloxetine (Cymbalta)“It has *greatly* exacerbated my heat intolerance, and I sweat profusely with little provocation.” In context ↗ Side effects
- Duloxetine (Cymbalta)“It has also significantly increased both my blood sugar and triglycerides/total cholesterol. ... It also raised my blood pressure, cholesterol, and blood sugar/A1C considerably.” Other
- Duloxetine (Cymbalta)“Now I can't get off it because the discontinuation syndrome is intolerably severe no matter how slowly I titrate.” In context ↗ Withdrawal problems
- “I have a 2-4 week flare every time I get a flu shot.” In context ↗ Made symptoms worse
- “Previous severe flares were caused by a surgery, my annual flu vaccine, and a tetanus shot.” In context ↗ Made symptoms worse
- Other surgery (adrenal, lung, venoplasty)“an abdominal surgery in 2023 kicked everything back into high gear and added new symptoms” In context ↗ Made symptoms worse
- Shingles vaccine (Shingrix)“My covid-induced dysautonomia flared up pretty bad after my first shot, too.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“my only side effect (besides a sore arm) is a few days of multifocal PVCs (a type of heart palpitation).” In context ↗ Heart rhythm problems
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitusVision problems
Their words about their symptoms
- Post-exertional malaise
I'm pretty wiped out and flared up the day after a walk
In context ↗ - Brain fog
several mild-to-moderate cognitive impairments
In context ↗ - POTS & dysautonomia
autonomic nervous system is a mess
In context ↗ - Mast cell (MCAS) & allergies
I am now being treated for those diagnoses plus MCAS and ME/CFS at an LC clinic
In context ↗ - Sleep problems
the physical inability to fall asleep on my own
In context ↗ - Pain & fibromyalgia
joint and muscle pain
In context ↗ - Gut problems
Multiple GI issues
In context ↗ - Breathlessness
overly shallow breathing
In context ↗ - Heart symptoms & palpitations
high resting heart rate and frequent PVCs
In context ↗ - Neuropathy & tingling
I have the shocks and vibrations, too
In context ↗ - Anxiety & low mood
I'm on 120mg of Duloxetine per day for pain, depression, and anxiety.
In context ↗ - Tinnitus
low-tone tinnitus
In context ↗ - Temperature regulation
my greatest obstacle by far is heat intolerance from dysautonomia
In context ↗
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