Long COVID left them in bed much of the first year, now much better with meds and pacing

Condition: Long COVID
At worst: Severe (mostly bedbound)
Ill before improving or writing: 2.5 years
Last post: Apr 2025

In their words

Condition: Long COVIDI got even worse long Covid. In context ↗
At worst: SevereI totally couldn't walk and spent months laying on my bed In context ↗
Now: Much betterI'm not getting crashes anymore...I'm almost at 3 years and have improved somewhat for around 5 months now In context ↗
Began after: COVIDI was wiped out pretty badly with Omicron, and never really got better

Read from 121 of their posts and comments; links to the 40 this page draws on

Summary

Osprey 97796 got long COVID from Omicron in August 2022 and spent much of the first year in bed with PEM, nerve pain, insomnia and MCAS. They credit a large stack of medications - LDN, Valtrex, antihistamines, an SSRI, a benzo and cannabis - plus rest and pacing. Infections and colds repeatedly set them back; by April 2024 they were much improved, with PEM crashes shorter and less debilitating, though PEM was still easily triggered.

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What they tried

What they credit

Benzodiazepine (Ativan, Valium)· Helped a lot Benzodiazepine (Ativan, Valium)· Helped a lot Medical cannabis· Helped a lot · main Prozac (fluoxetine)· Helped Low-dose naltrexone (LDN)· Helped · main · wore off Metformin· Helped Paxlovid· Helped Duloxetine / Cymbalta (SNRI)· Helped Pacing· Helped Rest· Helped NAC· Helped Creatine· Helped Glutamine· Helped

Also tried

Zoloft (sertraline)· HelpedZopiclone / stronger sleeping pill· HelpedMelatonin· Helped Valtrex (valacyclovir)· Helped Zyrtec (H1 antihistamine)· Helped Famotidine· Helped Montelukast· Helped Prednisone· Helped · wore off Doxycycline· HelpedTrelegy (asthma preventer inhaler)· HelpedLymphatic massage· Helped Apple Watch HRV tracking· HelpedWhole-food diet and daily green smoothies· HelpedElectrolytes in 2-4 litres of water· Helped Kefir / yogurt· Helped Amoxicillin· No change Amitriptyline· No change Iron· No change Lexapro (escitalopram)· Worse Exercise (jogs, bike rides, gardening, walking)· Much worseVentolin (salbutamol)· Not saidCelebrex· Not saidVoltaren / ibuprofen· Not saidCodeine· Not said ADHD medication (Vyvanse)· Not said Vitamin D· Not said Magnesium and zinc· Not said Magnesium and zinc· Not said

Their words about each treatment

Exercise (jogs, bike rides, gardening, walking) · Much worseI started trying to go on jogs and bike rides, and it made everything a lot worse very quickly In context ↗
Zoloft (sertraline) · HelpedI was taking Zoloft and stopped taking it probably 6 months into having long Covid In context ↗
Prozac (fluoxetine) · HelpedI’ve ended up going back on Prozac and also a benzo daily In context ↗
Benzodiazepine (Ativan, Valium) · Helped a lotit’s the only thing that makes me feel almost normal In context ↗
Medical cannabis · Helped a lotthe one thing out of all the above that helped the most when things felt the roughest was medical cannabis In context ↗
Zopiclone / stronger sleeping pill · HelpedI got Zopiclone for a while that would help sleep In context ↗
Melatonin · Helpedmelatonin at a fairly high dose was good too In context ↗
Low-dose naltrexone (LDN) · HelpedLDN has helped a lot too In context ↗
Valtrex (valacyclovir) · HelpedI have been take Valtrex antiviral tablets daily for a few months now In context ↗
Zyrtec (H1 antihistamine) · HelpedI find only Zyrtec works for me out of all the antihistamines In context ↗
Famotidine · HelpedFamotadine definitely helps with MCAS reactions from food In context ↗
Montelukast · HelpedMontelukast which brings down MCAS reactions quickly for me In context ↗
Prednisone · HelpedI took prednisone for asthma (while still having long covid) and felt basically like I was better In context ↗
Doxycycline · HelpedI’ve had to take Doxycycline at different times after viral infections In context ↗
Amoxicillin · No changethe other normal ones like amoxicillin did nothing In context ↗
Trelegy (asthma preventer inhaler) · Helpedthat actually helps a lot if I have a PEM crash with breathing where nothing else does In context ↗
Ventolin (salbutamol) · Not saidam using ventolin every day along with the other preventative medications In context ↗
Metformin · HelpedI’ve just started taking them, and feel suddenly a lot better In context ↗
Paxlovid · Helpedi basically begged for a paxlovid prescription In context ↗
Celebrex · Not saidI was actually prescribed celebrex for arthritis, but had fixed that with weights In context ↗
Voltaren / ibuprofen · Not saidwould sometimes take Voltarin instead of iboprofen (or celebrex) In context ↗
Codeine · Not saidalso took on and off a lot of codeine In context ↗
Lexapro (escitalopram) · WorseLexapro also did not agree with me either In context ↗
Amitriptyline · No changeI think I was prescribed it when I had vertigo and dizziness but can’t really remember it doing anything In context ↗
Duloxetine / Cymbalta (SNRI) · Helpednoticed I overall didn’t feel as fatigued or weak feeling or aching everywhere In context ↗
ADHD medication (Vyvanse) · Not saidI’m prescribed adhd meds, which helps me the same as it did before, but didn’t really fix fatigue In context ↗
Lymphatic massage · HelpedI did it and it massively reduced that poisoned feeling In context ↗
Apple Watch HRV tracking · HelpedThe HRV measuring on the Apple Watch is great for gauging where you’re at In context ↗
Pacing · Helpedpersistently doing all of this and pacing (working out how much activity you can do before a crash comes on) is the only thing that has helped with progress In context ↗
Rest · Helpedit was really only when I started to ‘rest’ like that for months …that I started to improve In context ↗
Whole-food diet and daily green smoothies · HelpedEating a heap of fresh not processed food and a lot of fibre In context ↗
NAC · HelpedI also found creatine, glutamine, and NAC helpful In context ↗
Vitamin D · Not saidand also adhd meds LOL and zinc and vitamin d and magnesium and NAC In context ↗
Electrolytes in 2-4 litres of water · HelpedDrinking a about 2-4 litres water a day with also adding electrolytes In context ↗
Kefir / yogurt · HelpedI’ve found drinking stuff like kefir yogurt to help a bit too In context ↗
Iron · No changeIf that were the case taking iron would have fixed my CFS but it definitely did not In context ↗

Approaches: SNRIs · SSRIs · Amino acids and carnitine · Antivirals · Benzodiazepines · Other drugs and medicines · Pacing · Radical rest · Supplements

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	After
August 2022	Omicron COVID infection; long acute stage with pneumonia, never really recoveredI’m currently at 20 months since I was wiped out pretty badly with Omicron, and never really got better In context ↗	Severe
2023	months in bed with PEM, severe whole-body and nerve pain, extreme insomnia, fight-or-flight and MCASI was basically in bed and really super fatigued and with a lot of nerve pain and fight and flight, MCAS for what felt like eternity though In context ↗	Severe
April 2024	breathing, fatigue and nerve pain suddenly much better; rated about 90%a lot of my fatigue and nerve pain has suddenly just got A LOT better ... Almost 2 years and probably at 90% but I felt like I was at 60% a few weeks ago	Near normal
August 2024	flu-like illness brought back PEM and MCAS symptomsI thought I had almost fully recovered, but then I got sick with I think a flu, and it seems to have brought back PEM and some MCAS symptoms In context ↗	Moderate
October 2024	crashed hard after moving house and starting a university degreeI somehow moved on pure adrenaline but then during the first month of study and having moved I crashed really hard In context ↗	Moderate
December 2024	restarted LDN and other long-COVID medications and improved a lot; fewer, shorter crashesthen I decided to restart a lot of medications and I did improve a lot after going back on LDN ... A lot better mostly back to normal almost over LC	Mild	Low-dose naltrexone
April 2025	no longer crashing, still getting POTS and mild PEM, not back to previous fitnessI still feel no where near like I did before, but I'm not getting crashes anymore In context ↗	Mild

Adverse events

Sertraline (Zoloft)“I went of Zoloft the hard way and stopped ... It was still rough abd I think took about 8 weeks until I felt like my brain chemistry had morphed back to a non medicated state” In context ↗ Withdrawal problems
Escitalopram (Lexapro)“Lexapro also did not agree with me either” In context ↗ Side effects
Sertraline (Zoloft)“Zoloft which is ok but gives me pretty extreme emotional blunting” In context ↗ Mood or psychiatric effects
Montelukast / Singulair“it causes me crazy crazy dreams” In context ↗ Side effects
Sertraline (Zoloft), Fluoxetine (Prozac), Escitalopram (Lexapro), Amitriptyline (Elavil), Duloxetine (Cymbalta)“I'm sensitive to most of them and if there's a side effect at the beginning or first few weeks, that usually doesn't go away ever.” In context ↗ Side effects
Sertraline (Zoloft), Fluoxetine (Prozac), Escitalopram (Lexapro), Amitriptyline (Elavil), Duloxetine (Cymbalta)“almost every SSRI or SNRI has added to fatigue” In context ↗ Side effects
Cannabis (THC, marijuana)“I took too much and it was like being on a never ending trip for 72 hours!” In context ↗ Side effects
Lisdexamfetamine (Vyvanse, Elvanse)“I've found that vyvanse can make crashes a bit worse if you've started to feel like you're improving” In context ↗ Made symptoms worse
Sertraline (Zoloft), Fluoxetine (Prozac), Escitalopram (Lexapro), Amitriptyline (Elavil), Duloxetine (Cymbalta)“I had to stop taking SNRI s as they affect me badly and make me get depression like worse.” In context ↗ Mood or psychiatric effects

Symptoms mentioned

Anxiety & low mood Breathlessness Flu-like symptoms Gut problems Light & noise sensitivity Loss of smell or taste Mast cell (MCAS) & allergies Muscle weakness Neuropathy & tingling POTS & dysautonomia Pain & fibromyalgia Post-exertional malaise Sleep problems

Their words about their symptoms

Post-exertional malaiseI still get PEM but it is getting less and less In context ↗
POTS & dysautonomiaI'm still getting pots but not as bad In context ↗
Mast cell (MCAS) & allergiesI definitely had really bad MCAS after Covid but it's become less, but I still get it in weird different ways In context ↗
Sleep problemsmixed with the most extreme insomnia I’ve ever had In context ↗
Pain & fibromyalgiaI started getting pretty severe pain all over my body In context ↗
Gut problemsacid reflux was causing havoc for me, but I didn’t realise I had it In context ↗
Light & noise sensitivityI was actually really sensitive to noise and light, but that is not as bad either now In context ↗
BreathlessnessMy breathing got really bad again In context ↗
Muscle weaknessI still have trouble lifting just normal not very heavy things In context ↗
Neuropathy & tinglingmy arms and legs feel weak, sore and tingly In context ↗
Anxiety & low moodMy anxiety is generally high and I get very physical anxiety anyway In context ↗
Flu-like symptomsa bunch of the same covid symptoms started coming back, almost randomly like vertigo, loss of taste, fever In context ↗
Loss of smell or tastethe beer I was drinking just tasted like nothing flavour In context ↗

Long COVID left them in bed much of the first year, now much better with meds and pacing

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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