Long COVID
Mild → somewhat betterIll 4 years before improving or writingNeeds ongoing treatment
Long COVID with PEM, muscle weakness and tinnitus, now somewhat better
- Condition
- Long COVID
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 4 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
I am a 46m and have had long COVID, me/CFS since December of 2022.
In context ↗ - At worst: Mild
at least I was still able to work before - barely.
In context ↗ - Now: Somewhat better
Then I've made steady improvement since and I am now objectively better than I was before getting covid this February.
In context ↗ - Began after: COVID
I started long hauling since a suspected covid infection in Dec 2022.
Read from 165 of their posts and comments; links to the 54 this page draws on
- Nov 2025
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Summary
Their long COVID/ME/CFS began with a suspected COVID infection in December 2022; they kept working through PEM, muscle weakness, tinnitus and sound sensitivity, and regret exercising hard in the first months. After a rough February 2024 reinfection they felt better than before it, but a June 2024 reinfection left them with digestive/GI problems. They continued working but had PEM crashes and significant symptoms; a deviated septum surgery was planned, with no outcome reported.
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What they tried
What they credit
Also tried
Ablation· Helped a lotBisoprolol· Helped a lotDayvigo· HelpedZyrtec / reactin (cetirizine)· HelpedChlorphenamine maleate· HelpedREAL gravol· HelpedCPAP· HelpedPregabalin· HelpedTrazodone· HelpedPepcid AC (famotidine)· Helped · wore offPantoprazole· HelpedAdvil (ibuprofen)· HelpedQiviviq· HelpedDomperidone· HelpedRed light panel· HelpedOatmeal before bed· HelpedTylenol 1 (codeine)· HelpedMagnesium· No changeNatto (nattokinase)· No changeRapamycin· No changeCoQ10· No changeHRT (testosterone)· No changePaxlovid· WorseLDN· WorseHydrocortisone· WorseIV steroid anti-inflammatory· WorseZopiclone· Much worseClonazepam· Much worseMelatonin· Not saidMethylene blue· Not saidVitamin D supplement· Not saidCreatine powder· Not saidZolpidem (Ambien)· Not said
Their words about each treatment
- Ablation · Helped a lot
7 years ago I had an ablation that was highly successful at curing my PVCs.
In context ↗ - Bisoprolol · Helped a lot
So about 1.25 mg and it does a very good job of keeping the heart calm.
In context ↗ - Zopiclone · Much worse
I've been through zDrug (zopiclone) tolerance withdrawal which forced me to crossover to Klonopin (Clonazepam) because of the longer half-life.
In context ↗ - Clonazepam · Much worse
A long gradual taper followed by a year of protracted withdrawal syndrome was hell on earth.
In context ↗ - Dayvigo · Helped
For me, the next day muscle fatigue is too much to handle to take it multiple days in a row.
In context ↗ - Zyrtec / reactin (cetirizine) · Helped
I'm taking 2 zyrtec (20mg) in morning and 2 zyrtec in evening.
In context ↗ - Chlorphenamine maleate · Helped
I am able to get back to sleep sometimes if I take zyrtec or chlorpheneramine maleate (spelled wrong) two hours before bed.
In context ↗ - REAL gravol · Helped
Also REAL gravol can help me drift off again sometimes.
In context ↗ - Direct sun exposure · Helped
I honestly feel so much better with direct sun on my body.
In context ↗ - Melatonin · Not said
Know if I take melatonin I get really groggy next day
In context ↗ - Magnesium · No change
I tried magnesium very early on chasing better sleep and it did nothing for that
In context ↗ - Paxlovid · Worse
I tried taking paxlovid and I had to stop on the second day because I couldn't take the side effects.
In context ↗ - CPAP · Helped
I love my CPAP especially when I'm exhausted. It makes breathing in so much easier.
In context ↗ - Natto (nattokinase) · No change
I've started taking natto and it hasn't made me worse.
In context ↗ - Pregabalin · Helped
Pregabalin seriously takes the edge off for me.
In context ↗ - Trazodone · Helped
Trazadone has been very helpful for me too.
In context ↗ - LDN · Worse
I could tolerate a couple of days on it, but then I'd start to feel terrible by day three.
In context ↗ - Low glutamate diet · Helped
Pregabalin is helping me 100mg a couple hours before bed, as is a low glutamate diet.
In context ↗ - Pepcid AC (famotidine) · Helped
I was taking pepcid ac 20mg to successfully keep that in check.
In context ↗ - Hydrocortisone · Worse
Took hydrocortisone. Feel awful? Anyone else?
In context ↗ - Pantoprazole · Helped
Then, at the end of January I started with pantoprozol 40 in the morning
In context ↗ - Rapamycin · No change
I took it for two months and got up to 4 mg per day.
In context ↗ - Jello fasts · Helped
I've recently been doing 2 day stints of only jello (Not sugar free) and water.
In context ↗ - Lorazepam · Helped a lot
It just melts PEM and most of the rest of the symptoms by 75-85%
In context ↗ - Methylene blue · Not said
Im taking .25ml of 2% solution which equates to approxinately 5mg.
In context ↗ - Advil (ibuprofen) · Helped
Ya, Advil helps me a bit for sure, but it's hard on the stomach
In context ↗ - Double jaw surgery · Helped
I don't even feel long-covid-y really.
In context ↗ - IV steroid anti-inflammatory · Worse
This stuff jacked my heart-rate and blood pressure into the hypertive range.
In context ↗ - Qiviviq · Helped
In the last two months I've started Qiviviq, and while it took a few weeks to notice some changes, I have seen improvement in the sleep quality I get.
In context ↗ - Domperidone · Helped
And while that helps, i also get bad diarrhea with it.
In context ↗ - Diazepam (Valium) · Helped
Diazepam seems to work so much better for me over a few days than lorazepam because of Diazepams longer halflife.
In context ↗ - Red light panel · Helped
I think the small panel helps a bit
In context ↗ - Vitamin D supplement · Not said
I actually take a vit d supplement anyways.
In context ↗ - CoQ10 · No change
COq10. IDK why I keep taking this.
In context ↗ - Creatine powder · Not said
Creatine powder in my shake for PEM recovery
In context ↗ - Oatmeal before bed · Helped
a bit of oatmeal at bed takes my sleep quality from a 2/10 to a 7/10
In context ↗ - HRT (testosterone) · No change
Though I did try HRT for a while. ... there wasn't much change at all.
In context ↗ - Tylenol 1 (codeine) · Helped
I've noticed that low dose opiates give me some overall improvement in symptoms and energy
In context ↗ - Zolpidem (Ambien) · Not said
I actually developed tolerance to ambien and started getting interdose withdrawal.
In context ↗
Approaches: Benzodiazepines · Diet · Supplements · Surgery & structural
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 2022 | suspected COVID infection; acute illness then brief improvementI got sick Dec 2022. Was really bad for 1.5 weeks. Then got a better.In context ↗ | Mild |
| January to June 2023 | steady decline while trying to run and work outI had a steady decline from Jan to June. I was trying to run. Work out.In context ↗ | Mild |
| July 2023 | dropped off a cliffThen started to drop off a cliff in July.In context ↗ | Mild |
| December 2023 | slowly getting better and more predictableIt had slowly been getting better and more predictable by December 2023In context ↗ | Mild |
| February 2024 | COVID reinfection; three weeks off workI got reinfected a month ago. It hit me really hard for 2.5 to 3 weeksIn context ↗ | Mild |
| June 2024 | COVID reinfection leaving new gastroparesisThe except would be that June of 24, I got it and ended up with new symptom. Gastroparesis (confirmed by GI Dr and testing).In context ↗ | Mild |
| July 2024 | steady improvement to better than before the February reinfectionThen I've made steady improvement since and I am now objectively better than I was before getting covid this February.In context ↗ | Mild |
| November 2025 | double jaw surgery with no crashI haven't crashed. I don't even feel long-covid-y really.In context ↗ | Mild |
| October 2026 | sleep improved on Qiviviq; mild gastroparesis persistsIn the last two months I've started Qiviviq, and while it took a few weeks to notice some changes, I have seen improvement in the sleep quality I get.In context ↗ | Mild |
Adverse events
- Lemborexant (Dayvigo)“For me, the next day muscle fatigue is too much to handle to take it multiple days in a row.” In context ↗ Side effects
- Zopiclone (Imovane)“I took as prescribed and hit tolerance withdrawal very quickly.” In context ↗ Withdrawal problems
- Clonazepam (Klonopin)“I took clonazepam as prescribed, low dose, for 2 months and became physically dependent on them. A long gradual taper followed by a year of protracted withdrawal syndrome was hell on earth.” In context ↗ Withdrawal problems
- Zolpidem (Ambien)“I actually developed tolerance to ambien and started getting interdose withdrawal.” In context ↗ Withdrawal problems
- Lorazepam (Ativan)“if I take it one or two nights in a row, I get rebound insomnia on night 3 and 4 after my last dose.” In context ↗ Insomnia from treatment
- Bisoprolol (Concor)“Gave me wicked migraines for the first 2 days though.” In context ↗ Side effects
- Bisoprolol (Concor)“My blood pressure did swing on the low side initially. ... I'm certain I went down into the 90/50 range.” In context ↗ Low blood pressure or fainting
- Paxlovid / nirmatrelvir“Then about 20 mins later lots of dizzyness and a bit of nausea.” In context ↗ Side effects
- Hydrocortisone / cortisol“Anyone try hydrocortisone and have it make you feel awful? ... Feel like my blood pressure is low.” In context ↗ Side effects
- Low-dose naltrexone“withing a few days I seem to get an all around uptick in LC symptoms.” In context ↗ Made symptoms worse
- Low-dose naltrexone“It made me feel worse. I could tolerate a couple of days on it, but then I'd start to feel terrible by day three.” In context ↗ Made symptoms worse
- Rapamycin / sirolimus“Had a weird headache last night and most of day today, but it seems to be passing.” In context ↗ Side effects
- Domperidone“And while that helps, i also get bad diarrhea with it.” In context ↗ Gut side effects
- Corticosteroid pulses“I reacted very poorly to the IV steroid anti-inflammatory. ... This stuff jacked my heart-rate and blood pressure into the hypertive range.” In context ↗ Heart rhythm problems
- Pregabalin (Lyrica)“Take too much though, and it adds to my fatigue and sluggishness.” In context ↗ Side effects
- Melatonin“Know if I take melatonin I get really groggy next day” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
Now I'm in a huge flare with pem.
In context ↗ - Brain fog
I have brain fog. Tinnitus and sound sensitivity.
In context ↗ - POTS & dysautonomia
This helps me when I get POTSy
In context ↗ - Sleep problems
I pass out quick. But I still wake up between 3 and 430 most nights
In context ↗ - Pain & fibromyalgia
I find it's helpful for mild pain and my tinnitus/noise sensitivity.
In context ↗ - Headaches & migraine
more like migraines with full on nausea
In context ↗ - Gut problems
Lots of diarrhea, followed by stints of constipation.
In context ↗ - Light & noise sensitivity
Sensitive to sound.
In context ↗ - Heart symptoms & palpitations
I take bisoprolol. Very helpful for a racing heart.
In context ↗ - Muscle weakness
Have lots of muscle weakness in my legs.
In context ↗ - Neuropathy & tingling
sensitivity to light/sound/neuropathy issues
In context ↗ - Temperature regulation
Yes I have heat intolerance.
In context ↗ - Anxiety & low mood
Physical Anxiety
In context ↗
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