Largely bedbound with long COVID, now much better after rest and CHOP exercise

Condition: Long COVID
At worst: Severe (mostly bedbound)
Ill before improving or writing: 18 months
Last post: Jul 2026

In their words

Condition: Long COVIDI got COVID in June 2022 and finally realized my fatigue/brain fog/ dysautonomia was LC a year later In context ↗
At worst: SevereI was essentially bedbound for all of January and February In context ↗
Now: Much betteroverall I’d say I’ve improved substantially. I’m working part-time now and can take on some household and childcare tasks In context ↗
Began after: COVIDI got COVID in June 2022
Says they never had: Mast cell (MCAS) & allergiesI also do not have signs of MCAS to my knowledge
Says they never had: Pain & fibromyalgiaI don’t have pain as one of my LC symptoms

Read from 115 of their posts and comments; links to the 49 this page draws on

Summary

She fell ill with long COVID after a mild COVID infection in June 2022, with fatigue, brain fog, dysautonomia and POTS, and kept working for 18 months. She was largely bedbound in January and February 2024, then improved substantially after quitting work and resting two months, later crediting CHOP exercise. By April 2024 she was working part time, parenting and exercising sometimes, but still had PEM and POTS.

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What they tried

What they credit

Functional medicine provider· Helped a lot Radical rest (quit PhD and took leave from work)· Helped a lot · main CHOP protocol (supine exercise)· Helped a lot · main fludrocortisone· Helped a lot Meditation, body scans and light yoga· Helped Salt, fluids and compression gear· Helped Salt, fluids and compression gear· Helped Kratom· Helped · wore off low-dose naltrexone (LDN)· Helped Curable app and Dr. Alan Gordon’s method· Helped Pacing· Helped

Also tried

Ativan, diazepam (Valium)· Helped a lot Ativan, diazepam (Valium)· Helped a lot Sensate vagus nerve toner· Helped a lot Adderall· Helped · wore off CBTi (cognitive behavioural therapy for insomnia)· Helped Vaping (nicotine), later nicotine patches· Helped Cannabis edibles· Helped prophylactic antibiotics· HelpedD-Mannose supplement· HelpedPEMF heat mat· Helped cold water immersion· Helped Coffee· HelpedAmbien, Lunesta and OTC sleep aids· No changetrazodone, mirtazapine· No change trazodone, mirtazapine· No change Claritin (loratadine), later Zyrtec· No change Claritin (loratadine), later Zyrtec· No change Pepcid (famotidine)· No change Atenolol· No change ivabradine· No change propranolol· Worse Trintellix· Worse Wellbutrin· Worse Psychotherapy· Worse Pulsetto· Worse losartan· Not said Visible app· Not saidDigestive enzymes (without HCl)· Not saidsenna, Miralax, Citrucel and suppositories· Not saidMagnesium· Not said red light therapy· Not saidpsilocybin (macro and microdose)· Not saidPregabalin· Not said rapamycin· Not said Sertraline (Zoloft)· Not said

Their words about each treatment

losartan · Not saidI recently started tapering off the losartan and my symptoms have really improved In context ↗
Ativan, diazepam (Valium) · Helped a lotultimately that was the only thing that calmed my system enough to sleep In context ↗
Adderall · Helpedthe vasoconstriction has been IMMENSELY helpful in controlling my POTS symptoms In context ↗
Ambien, Lunesta and OTC sleep aids · No changeNo sleeping meds worked at all In context ↗
CBTi (cognitive behavioural therapy for insomnia) · HelpedI did CBTi 2.5x early on in my illness ... Essentially what this did was remove my fear around not sleeping In context ↗
Meditation, body scans and light yoga · HelpedI’ve gotten VERY into meditation since I got sick (summer 2022) and have found that it really helps me relax In context ↗
Functional medicine provider · Helped a lotShe’s been profoundly helpful in my journey In context ↗
Salt, fluids and compression gear · HelpedSalt. My secret weapon is Takis. No joke they’ve rescued me from the brink of collapse In context ↗
Vaping (nicotine), later nicotine patches · HelpedIt REALLY helps with my POTS, as do other stimulants In context ↗
Kratom · HelpedI have also found kratom extremely helpful, though less so since I started LDN In context ↗
Cannabis edibles · HelpedI also use edibles at night and my sleep has improved substantially In context ↗
Claritin (loratadine), later Zyrtec · No changeI’m currently taking famotodine (Pepcid) and loratadine (claritin), but neither are clearly effective In context ↗
Pepcid (famotidine) · No changeI take Zyrtec for that and Pepcid AC (famotidine 40 mg) for stomach issues In context ↗
propranolol · Worsemy doctor started me on propranolol, but it gave me weird chest sensations when it wore off In context ↗
Atenolol · No changeI’ve been on Atenolol (50 mg) and it doesn’t do anything for me, so I’m tapering off In context ↗
Trintellix · WorseI stopped taking it because I didn’t find it helpful In context ↗
Radical rest (quit PhD and took leave from work) · Helped a lotI laid in bed for about two months and improved dramatically during that time In context ↗
low-dose naltrexone (LDN) · HelpedI think low dose naltrexone has helped substantially with my “brain fog” In context ↗
Curable app and Dr. Alan Gordon’s method · HelpedThis app has really helped me integrate my mind and body In context ↗
CHOP protocol (supine exercise) · Helped a lotlight exercise has led to more overall improvement in my condition more than anything else I’ve done (besides rest) In context ↗
Pacing · HelpedI take care to pace myself to avoid PEM In context ↗
Visible app · Not saidI use the Visible app for pacing myself In context ↗
ivabradine · No changeI got ivabradine through my GP but it doesn’t work at all In context ↗
fludrocortisone · Helped a lotI recently started fludrocortisone, which is the first med that has really helped with the HR skyrocketing when upright In context ↗
Digestive enzymes (without HCl) · Not saidI’m supposed to take the digestive enzymes after “meals” In context ↗
prophylactic antibiotics · HelpedMy dr prescribed prophylactic antibiotics In context ↗
D-Mannose supplement · HelpedI’m taking a daily supplement that contains D-Mannose In context ↗
senna, Miralax, Citrucel and suppositories · Not saidIf that doesn’t work after a couple days, I bust out the suppositories In context ↗
Magnesium · Not saidFirst I try a combo of magnesium/senna/miralax/citrucel In context ↗
PEMF heat mat · HelpedI bought a PEMF mat that I swear on my life is the best impulse purchase of my life In context ↗
red light therapy · Not saidI don’t think the place I went to had ideal conditions In context ↗
cold water immersion · HelpedI’ve also gotten into cold water immersion, which I’ve found really helps with my energy levels In context ↗
psilocybin (macro and microdose) · Not saidit sent me into a full fledged panic attack In context ↗
Wellbutrin · WorseI took Wellbutrin briefly but it actually triggered my sympathetic nervous system In context ↗
Psychotherapy · Worsemy session last week rendered me exhausted for two days In context ↗
Coffee · HelpedIt REALLY helps with my POTS, as do other stimulants (coffee, ADHD meds, etc) In context ↗
Pregabalin · Not saidI just started Pregabalin but it’s a low dose In context ↗
Sensate vagus nerve toner · Helped a lotAbsolutely huge game changer for me In context ↗
Pulsetto · WorsePulsetto, not so much. Hated it. In context ↗
rapamycin · Not saidI recently started rapamycin to address mitochondrial dysfunction In context ↗
Sertraline (Zoloft) · Not saidI’ve tried sertraline in the past (pre-covid) and also had bad side effects. In context ↗

Approaches: POTS medication · Alternative therapies · Brain retraining · Mind-body practices · Other drugs and medicines · Pacing · Physiotherapy and rehab · Radical rest

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
June 2022	mild COVID infection, long COVID beginsI continued working for the first 18 months of my LC journey (full time for the first year, half time for the next six months). In context ↗	Mild
November 2023	brief improvement about two weeks after COVID vaccineI had about one banner month and then descended back into LC hell. In context ↗	Mild
January 2024	bedbound after car accidents, UTIs, flu, work deadline and holiday travelI did not leave my house, I did not pay my bills, I left my bed to go to the bathroom, occasionally walk downstairs to eat a packaged snack from the pantry In context ↗	Severe
March 2024	dramatic improvement after quitting work and two months of bed rest; started CHOPby the end of March was at the gym a few times a week (doing the CHOP protocol) and returned to work part-time (only 10 hrs per week) In context ↗	Moderate	Radical rest
April 2024	crashed after driving 40 hours in five days to see the eclipseI’m finally recovering from that idiocy, and starting back at the gym this week. In context ↗	Moderate
August 2024	fludrocortisone helped POTS and energyI recently started fludrocortisone, which is the first med that has really helped with the HR skyrocketing when upright. I have a lot more energy, but I’m certainly not out of the woods. In context ↗	Mild	Fludrocortisone / Florinef
December 2024	working part-time and taking on some household and childcare tasksI’m working part-time now and can take on some household and childcare tasks. In context ↗	Mild
April 2026	working, parenting and exercising sometimes, with ups and downsI work, parent, even exercise sometimes, and have never for one second feared this illness. In context ↗	Mild

Adverse events

Cetirizine (Zyrtec)“I’ve only taken Zyrtec once and had horrible side effects (ironically, brain fog and fatigue…)” In context ↗ Side effects
Loratadine (Claritin), Cetirizine (Zyrtec)“Benadryl kept me awake all night and basically hallucinate, and things like Zyrtec/claritin, etc would make me a zombie.” In context ↗ Side effects
Famotidine (Pepcid)“Even Pepcid altered by functioning so much I couldn’t take it.” In context ↗ Side effects
Propranolol (Inderal)“my doctor started me on propranolol, but it gave me weird chest sensations when it wore off” In context ↗ Heart rhythm problems
Sertraline (Zoloft)“I’ve tried sertraline in the past (pre-covid) and also had bad side effects.” In context ↗ Side effects
Trazodone (Desyrel), Mirtazapine (Remeron), Vortioxetine (Trintellix), Bupropion (Wellbutrin)“They didn’t do squat for me, and actually made my GI symptoms worse.” In context ↗ Gut side effects
Amphetamine salts (Adderall)“I couldn’t tolerate the stimulants I’d been taking for seven months (for adhd)” In context ↗ Side effects
Lorazepam (Ativan), Diazepam (Valium)“I went through a (forced) cold turkey benzo withdrawal four months into LC. I’m convinced it made things so much worse.” In context ↗ Withdrawal problems
“I tried a microdose one day - thinking it would just give me a bit of energy - and it sent me into a full fledged panic attack.” In context ↗ Mood or psychiatric effects
Cannabis (THC, marijuana)“it often exacerbates my fast heart rate and makes my symptoms worse in the moment” In context ↗ Made symptoms worse
CBT and psychotherapy“after my session last week rendered me exhausted for two days” In context ↗ Made symptoms worse

Symptoms mentioned

Anxiety & low mood Brain fog Breathlessness Gut problems Heart symptoms & palpitations Light & noise sensitivity Neuropathy & tingling POTS & dysautonomia Post-exertional malaise Sleep problems Temperature regulation

Their words about their symptoms

Post-exertional malaiseI still get PEM but it’s not as severe and not as easily triggered. In context ↗
Brain fogMy cognition continues to be much better than it was. In context ↗
POTS & dysautonomiaI still meet the POTS criteria with flying colors In context ↗
Sleep problemsAt the beginning I had extreme muscle tension and insomnia but those symptoms are no longer present. In context ↗
Heart symptoms & palpitationsmy HR shoots up to over 100, and yesterday in the shower it hit 140 In context ↗
Neuropathy & tinglingAlso tingling, numbness, circulation problems In context ↗
Gut problemsI’ve for sure had IBS since getting LC (alternating diarrhea with constipation). In context ↗
Anxiety & low moodtrouble regulating body temperature, cold sweats, anxiety In context ↗
Temperature regulationtrouble regulating body temperature, cold sweats In context ↗
Light & noise sensitivityOn day 6 I’m also extremely sensitive to overstimulation In context ↗
Breathlessnessthough I do get short of breath, it happens more when I’m tired In context ↗

Largely bedbound with long COVID, now much better after rest and CHOP exercise

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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