Long COVID
Severe → somewhat betterIll 4 years before improving or writing
Long COVID ME/CFS severe, unable to speak, somewhat better with fludrocortisone and folate
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- May 2025
In their words
- Condition: Long COVID
My long COVID is cfs related and 4 years old.
In context ↗ - At worst: Severe
the exhaustion was around for months and made me severe. I couldn't stand for longer than 30 seconds (normally I'm closer to 2 minutes)
In context ↗ - Now: Somewhat better
This winter isn't as bad as last winter was for me ... I'm doing better now that I broke up with my high energy partner
In context ↗ - Began after: COVID
My long COVID is cfs related and 4 years old.
In context ↗
Read from 71 of their posts and comments; links to the 30 this page draws on
Summary
Harbor 99080 has had long-COVID-related ME/CFS since January 2020, slowly declining for four years before leveling out around year four. A winter virus in early 2024 made them severe for two months, unable to stand 30 seconds or speak; fludrocortisone 0.1 mg ended that crash and they tapered off without relapse. Folate, after a gene test showed poor folate metabolism, gave more energy, and a wheelchair let them leave the house. They were still disabled in 2025.
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What they tried
What they credit
Also tried
Power wheelchair· Helped a lotFludrocortisone· Helped a lot · wore offMonistat· HelpedDigestive enzymes· HelpedTurmeric pills· HelpedEating vegetables· HelpedDeep breathing breaks, progressive muscle relaxation and yoga· HelpedWeed (cannabis)· HelpedAdderall· HelpedTENS machine· HelpedLock Me Out app· HelpedEffexor· HelpedBlood patch· Helped · wore offVitassium salt pills· HelpedFoam roller· HelpedEating meat and more protein· HelpedLicorice / DGL capsules· No changeB12· No changeMelatonin· No changeStellate ganglion block· No changePrednisone· WorseB-vitamin supplement with all active forms· Not saidSleeping pills· Not saidProzac· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- Monistat · Helped
My eczema is from Candida, I put monistat on it and it clears right up.
In context ↗ - Digestive enzymes · Helped
I take digestive enzymes and they definitely help.
In context ↗ - Turmeric pills · Helped
I've also had benefits from turmeric pills, it's anti inflammatory and helps my stomach when it's too sensitive.
In context ↗ - Licorice / DGL capsules · No change
Capsules were useless for me because they didn't break down quick enough.
In context ↗ - Eating vegetables · Helped
Eating vegetables make my body feel better.
In context ↗ - Deep breathing breaks, progressive muscle relaxation and yoga · Helped
I take breaks regularly every couple of hours to breathe deeply and blow out my stress.
In context ↗ - Weed (cannabis) · Helped
Weed also really helps.
In context ↗ - Folate supplementation · Helped
Now that I'm taking folate supplementation I have a lot more energy than I did prior.
In context ↗ - B-vitamin supplement with all active forms · Not said
I bought those a week ago so I haven't noticed any changes
In context ↗ - Adderall · Helped
There's only one way I can take stimulants nowadays. I dissolve a pill in water and take a sip of it.
In context ↗ - TENS machine · Helped
A TENS machine helps mine. I have to move around the pads as different muscles start relaxing.
In context ↗ - Lock Me Out app · Helped
I use the app Lock Me Out.
In context ↗ - Corticosteroids from cardiologist · Helped a lot
My cardiologist gave me corticosteroids and that's the only thing that got me pre-tiny winter virus
In context ↗ - Power wheelchair · Helped a lot
That made a huge difference to me because I didn't need to stand up in order to move.
In context ↗ - Pacing · Helped
it really is about pacing. I'm doing better now that I broke up with my high energy partner
In context ↗ - Effexor · Helped
I took effexor (a slightly different snri) and it helped with fatigue by helping me sleep better.
In context ↗ - Sleeping pills · Not said
I was later put on sleeping pills
In context ↗ - Prozac · Not said
The next psychiatrist gave me Prozac to help ween me off the effexor
In context ↗ - B12 · No change
I take B12 and melatonin and have for years, it doesn't fix long COVID.
In context ↗ - Stellate ganglion block · No change
I had two done and nothing happened.
In context ↗ - Fludrocortisone · Helped a lot
It helped me get out of a crash that lasted two months, but after that wasn't doing anything anymore so I tapered off.
In context ↗ - Blood patch · Helped
I had a blood patch and felt *awesome* for 4 days so we think that's what I have.
In context ↗ - Vitassium salt pills · Helped
I get fewer dizzy spells when I've had them so it's worth it to me.
In context ↗ - Foam roller · Helped
It's extremely effective, far more than anything else I've tried, and my legs are no longer in as much pain as they were before I started.
In context ↗ - Elimination diet · Helped
I started eating meat when I was on an elimination diet after developing weird food allergies. ... I started feeling better. Not like great, but it took an edge off the exhaustion
In context ↗ - Eating meat and more protein · Helped
eating meat did in fact give me extra energy
In context ↗ - Prednisone · Worse
My experience with prednisone is that it helps in the same way screaming at a crying child to shut up helps.
In context ↗ - COVID vaccination as treatment · Not said
I got the novavax and was mildly tired for a week after.
In context ↗
Approaches: Diet · Other drugs and medicines · Pacing · 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. The chart starts 4 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| January 2020 | illness beginsJanuary 2020. Can't sing more than a chorus without needing to rest my mouth afterwords.In context ↗ | Not stated | |
| early 2024 | winter virus made them severe for two monthsI had a tiny little winter virus and became severe for 2 months.In context ↗ | Severe | |
| early 2024 | steroid/fludrocortisone ended the two-month crashMy cardiologist gave me corticosteroids and that's the only thing that got me pre-tiny winter virusIn context ↗ | Moderate | Fludrocortisone / Florinef |
| April 2024 | folate supplements after gene test gave more energyNow that I'm taking folate supplementation I have a lot more energy than I did prior.In context ↗ | Moderate | |
| January 2025 | got a power chair and can leave the houseI can finally leave the houseIn context ↗ | Moderate | |
| May 2025 | still disabled, can manage stairs but not stairs with laundryi can go up two flights of stairs without a problem, but rest going up one flight with laundry.In context ↗ | Moderate |
Adverse events
- Amphetamine salts (Adderall)“I can't take the xr if I split the tiny balls into 3 or 4 parts, but a whole 5mg fucks me up.” In context ↗ Side effects
- Venlafaxine (Effexor)“I'm not planning on ever going on a snri due to how critical I feel when I miss a dose, it basically steals an entire day.” In context ↗ Withdrawal problems
- COVID vaccination as treatment“I got the novavax and was mildly tired for a week after.” In context ↗ Side effects
- Foam rolling“It's brutal at first, when you're squashing all the tight muscles, but it gets easier.” In context ↗ Other
Symptoms mentioned
Anxiety & low moodGut problemsHeadaches & migraineLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I've noticed I get more pem from lifting something than I would from equally strenuous exercise so I avoid it.
In context ↗ - POTS & dysautonomia
I get fewer dizzy spells when I've had them so it's worth it to me.
In context ↗ - Mast cell (MCAS) & allergies
I'm allergic to eggs and milk so I still avoid those
In context ↗ - Sleep problems
I was later put on sleeping pills and phased out the effexor
In context ↗ - Pain & fibromyalgia
my legs are no longer in as much pain as they were before I started
In context ↗ - Headaches & migraine
A TENS machine helps mine.
In context ↗ - Gut problems
it's anti inflammatory and helps my stomach when it's too sensitive
In context ↗ - Light & noise sensitivity
I often use ear plugs when I'm alone so my brain doesn't have to process noises like the wind or heater.
In context ↗ - Muscle weakness
Can't sing more than a chorus without needing to rest my mouth afterwords.
In context ↗ - Anxiety & low mood
I have less energy when I'm depressed.
In context ↗
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