ME/CFS barely left bed over a year, now fairly mild after hydroxychloroquine and steroids
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4.5 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
The rheumatologist who diagnosed my ME/CFS told me that it makes sense since vaccinations activate the immune system.
In context ↗ - At worst: Severe
I spent over a year so sick I could barely get out of bed before I went to this doctor
In context ↗ - Now: Much better
I've gone from basically housebound to fairly mild since. I can now do a lot of things I hadn't been able to do in years.
In context ↗ - Began after: a vaccination
my ME/CFS was initially triggered by the first dose of the Pfizer COVID vaccine
Read from 52 of their posts and comments; links to the 27 this page draws on
Summary
A 32-year-old became severely ill days after a first Pfizer vaccine dose in March 2021 and spent over a year barely able to leave bed. From 2022 hydroxychloroquine helped joint and muscle pain and some fatigue, while corticosteroids and immunosuppressants eased fatigue, PEM and dysautonomia; hydroxychloroquine was stopped after about three years because of eye toxicity. After her job ended in August 2025 she improved from basically housebound to fairly mild, with manageable PEM.
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What they tried
What they credit
Also tried
Their words about each treatment
- steroid inhaler · No change
Doctor even gave me an inhaler at one point and that also didn't work.
In context ↗ - over-the-counter cough syrups and cough drops · No change
that seems to be resistant to most cough syrups, inhalers and cough drops
In context ↗ - cough syrup with codeine · Helped a lot
my doctor had me start taking a cough syrup with codeine and that finally seems to have helped
In context ↗ - prunes · Helped
Eating prunes has helped me a lot.
In context ↗ - Aleve (naproxen) · Helped
Aleve seems to be the only thing that eases my constant headaches and it seems to help with the mental fog as well.
In context ↗ - vitamin B complex injections · Helped a lot
Vitamin B complex injections helped me a ton while I was getting them.
In context ↗ - salt, fluids, broth and compression socks · Helped a lot
I've been drinking broth 1-2 times a day, which has helped tremendously.
In context ↗ - Strepsils · Helped
I found them helpful in at least soothing my throat a bit
In context ↗ - lukewarm to cold showers · Helped a lot
I've gone from needing to lay down for hours and being done for the day after taking a shower, to feeling almost normal
In context ↗ - shower chair · Helped
Showering while sitting has also made a big difference.
In context ↗ - low-dose corticosteroids (deflazacort) · Helped
They did put me on low dose corticosteroids and immunosuppressants several months ago, and that has helped tremendously with the fatigue, PEM, and dysautonomia.
In context ↗ - Plaquenil (hydroxychloroquine) · Helped a lot
I've been taking Plaquenil for over a year and it has made a huge difference.
In context ↗ - Vortioxetine (Trintellix/Brintellix) · Helped a lot
My psychiatrist prescribed it along with a low daily dose of Lyrica for the brain fog and memory issues. Both have been a huge help.
In context ↗ - CoQ10 / ubiquinol · Helped
It's reduced my fatigue by about 5%
In context ↗ - magnesium glycinate · Helped
Magnesium glycinate has made a HUGE difference.
In context ↗ - duloxetine (Cymbalta) · Helped
It has helped with tingling on my hands and feet
In context ↗ - time at sea level · Helped
my symptoms significantly improve at sea-level
In context ↗
Approaches: POTS medication · Other drugs and medicines · 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 |
|---|---|---|---|
| March 2021 | First Pfizer vaccine dose; bedbound within daysWithin a few days, I was extraordinarily sick and couldn't get out of bed.In context ↗ | Severe | |
| December 2021 | bad relapse around Christmas while pushing through a new jobI tried to push through it and hide it but it has blown up in my face a bit recently due to a relapse around Christmas.In context ↗ | Mild | |
| August 2022 | rheumatologist started corticosteroids and immunosuppressantshe has me taking corticosteroids and immunosuppressants. They have helped tremendously with fatigue.In context ↗ | Moderate | Hydroxychloroquine / Plaquenil |
| 2024 | mild-moderate, working full timeI would consider myself mild-moderate. I still work full time but cannot walk more than a block or two in a day without crashing.In context ↗ | Mild | Hydroxychloroquine / Plaquenil |
| July 2024 | crashed for a few days after two beach tripsthe trip caused me to crash for a few days (on the way there and returning), it was worth itIn context ↗ | Mild | |
| August 2025 | job ended; improved from housebound to fairly mildI've gone from basically housebound to fairly mild since. I can now do a lot of things I hadn't been able to do in years.In context ↗ | Mild | |
| August 2026 | baseline improved further; stopped using a caneIn the last year, my baseline has improved significantly and I no longer use the cane at all.In context ↗ | Mild |
Adverse events
- Vortioxetine (Trintellix)“The only side effects I've had are a mild tremor/clumsiness that quickly stops after I stop taking Vortioxetine” In context ↗ Side effects
- Pregabalin (Lyrica)“having to be careful with anything that causes drowsiness (allergy meds, alcohol, etc) as the Lyrica magnifies the effect.” In context ↗ Side effects
- Duloxetine (Cymbalta)“This has been my life since upping my dosage of duloxetine. Dreams are so intense they wake me up almost every night.” In context ↗ Insomnia from treatment
- CoQ10 / ubiquinol“I tried the regular kind first and that gave me insomnia.” In context ↗ Insomnia from treatment
- Hydroxychloroquine / Plaquenil“Doctor only took me off it because of toxicity to the eyes.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
only had very manageable levels of PEM
In context ↗ - Brain fog
The brain fog and calf pain hasn't really changed though.
In context ↗ - POTS & dysautonomia
sitting does trigger bad orthostatic intolerance
In context ↗ - Pain & fibromyalgia
reduce the 24/7 muscle pain in my calves to negligible levels
In context ↗ - Sleep problems
Dreams are so intense they wake me up almost every night.
In context ↗ - Headaches & migraine
Aleve seems to be the only thing that eases my constant headaches
In context ↗ - Mast cell (MCAS) & allergies
I've developed a sun allergy
In context ↗ - Neuropathy & tingling
It has helped with tingling on my hands and feet
In context ↗ - Gut problems
Eating prunes has helped me a lot.
In context ↗ - Temperature regulation
Heat is brutal and exhausting
In context ↗
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