Long COVID
Severe → near normalIll 5.5 years before improving or writingNeeds ongoing treatment
Bedbound with long COVID early on, now close to normal after therapy and brain training
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5.5 years
- Last post
- Sep 2025
In their words
- Condition: Long COVID
I got long covid April 2020 as well
In context ↗ - At worst: Severe
I was no longer bed bound and could do other kinds of light exercise.
In context ↗ - Now: Near normal
most people would think I’m not disabled at all. My good days I question it myself. I could probably ride a regular bike on and off all morning now.
In context ↗ - Began after: COVID
I got long covid April 2020 as well
In context ↗
Read from 20 of their posts and comments; links to the 16 this page draws on
Summary
Got long COVID in April 2020 and spent the early years bed bound with crippling brain fog and crashes. A dysautonomia physical therapy programme and brain training slowly rebuilt function; later a CGRP drug plus stimulants and progesterone-only birth control greatly improved their quality of life. They reached about 70% of normal before a 2025 reinfection set them back, though by late 2025 crashes were milder.
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What they tried
What they credit
stimulants (Ritalin ER)· Helped a lot · maindysautonomia international physical therapy program· Helped a lotprogesterone only BC pills· Helped a lotCGRPs· Helped · main · wore offMetformin· HelpedLDN· Helpedmushrooms from “doctor Nicole’s” / lionsmane, reishi· Helpedoccupational therapy· Helpedpacing· Helpedphysical therapy· HelpedCBD· Helpedmelatonin· HelpedPepcid· Helpedmultivitamin· Helpedmagnesium· Helpedlionsmane· Helpedreishi· Helped
Also tried
antihistamine (Benadryl)· Helpedbrain training with a brain puzzle book· Helpedsensory tools before a crash· Helpedcyclobenzaprine at night· Helpedfloradix· HelpedCOVID vaccination (mRNA)· HelpedAcupuncture· No changeQi- gong· No changeMeditation· No changeCurable App - CBT and Brain Training· No changeLow histamine diet· No changeAnti-inflammatory diet· No changeLow histamine + anti-inflammatory diet· No changeGreens only diet· No changeHollotropic breathwork· No changeCold showers· No changeYoga· No changeTrauma release exercises· No changeMassage· No changeSensory deprivation· No changeSpiritual Healers· No changeFunctional medicine doctor· No changeThinking positive· No changePushing through· No changeEMDR· No changeAmlopidine· No changeBeta blockers· No changeTopomax· No changeCitalopram· No changeIV drips with vitamins and minerals· No changeSphenopallatine block· No changeStellate ganglion block· No changeOccipital nerve block· No changeBotox for migraine· No changeInjections of anti-inflammatory drugs· No changeLief- HRV haptics device· No changeApollo- HRV haptics device· No changeVagus Nerve Stimulation· No changeCraniosacral therapy· Worse
Their words about each treatment
- stimulants (Ritalin ER) · Helped a lot
Ritalin plus CGRPs have been a life changer for me.
In context ↗ - CGRPs · Helped
CGRPs plus stimulants changed my life.
In context ↗ - Metformin · Helped
What I think is helping: antihistamine, Pepcid, LDN, Metformin
In context ↗ - LDN · Helped
What I think is helping: antihistamine, Pepcid, LDN
In context ↗ - mushrooms from “doctor Nicole’s” / lionsmane, reishi · Helped
the mushrooms I take from “doctor Nicole’s” also help but it’s more subtle so I’m not sure
In context ↗ - occupational therapy · Helped
occupational therapy- where I learned about pacing both physical pacing and cognitive pacing
In context ↗ - pacing · Helped
Occupational therapy helped me learn to pace and set up life in a more helpful way.
In context ↗ - dysautonomia international physical therapy program · Helped a lot
Getting reconditioned didn’t get rid of all my LC symptoms but it gave me a life again.
In context ↗ - physical therapy · Helped
I paired that program with physical therapy which I did via telehealth
In context ↗ - antihistamine (Benadryl) · Helped
Taking Benadryl was the only thing that helped that sensation for me.
In context ↗ - brain training with a brain puzzle book · Helped
I started brain training with a brain puzzle book (small, tiny bits at a time).
In context ↗ - CBD · Helped
I take drawn CBD with a tiny amount of melatonin every night and I think it helps my overall wellbeing score
In context ↗ - melatonin · Helped
a tiny amount of melatonin every night and I think it helps my overall wellbeing score
In context ↗ - progesterone only BC pills · Helped a lot
Being on the progesterone brought me back to life in many ways
In context ↗ - sensory tools before a crash · Helped
using sensory tools before I crash (blindfolds, headphones, etc)
In context ↗ - Pepcid · Helped
What I think is helping: antihistamine, Pepcid
In context ↗ - multivitamin · Helped
What I think is helping: antihistamine, Pepcid, LDN, Metformin, multivitamin
In context ↗ - magnesium · Helped
multivitamin, magnesium, lionsmane
In context ↗ - lionsmane · Helped
magnesium, lionsmane, reishi
In context ↗ - reishi · Helped
lionsmane, reishi, melatonin
In context ↗ - cyclobenzaprine at night · Helped
progesterone only BC pills, cyclobenzaprine at night
In context ↗ - Acupuncture · No change
Acupuncture, 3 different providers (might have helped for a day or so afterwards but no long term changes)
In context ↗ - Curable App - CBT and Brain Training · No change
Curable App - CBT and Brain Training
In context ↗ - Low histamine diet · No change
Low histamine diet
In context ↗ - Anti-inflammatory diet · No change
Anti-inflammatory diet
In context ↗ - Low histamine + anti-inflammatory diet · No change
Low histamine + anti-inflammatory diet
In context ↗ - Greens only diet · No change
Greens only diet
In context ↗ - Hollotropic breathwork · No change
Hollotropic breathwork
In context ↗ - Trauma release exercises · No change
Trauma release exercises
In context ↗ - Craniosacral therapy · Worse
Craniosacral therapy - made my headaches soooo much worse
In context ↗ - Sensory deprivation · No change
Sensory deprivation
In context ↗ - Spiritual Healers · No change
Spiritual Healers
In context ↗ - Functional medicine doctor · No change
Functional medicine doctor
In context ↗ - Thinking positive · No change
Thinking positive
In context ↗ - Pushing through · No change
Pushing through
In context ↗ - IV drips with vitamins and minerals · No change
IV drips with vitamins and minerals x4
In context ↗ - Sphenopallatine block · No change
Sphenopallatine block x 2
In context ↗ - Stellate ganglion block · No change
Stellate ganglion block x 2
In context ↗ - Occipital nerve block · No change
Occipital nerve block
In context ↗ - Botox for migraine · No change
Botox for migraine x7
In context ↗ - Injections of anti-inflammatory drugs · No change
Injections of anti-inflammatory drugs
In context ↗ - Lief- HRV haptics device · No change
Lief- HRV haptics device
In context ↗ - Apollo- HRV haptics device · No change
Apollo- HRV haptics device
In context ↗ - Vagus Nerve Stimulation · No change
Vagus Nerve Stimulation
In context ↗ - floradix · Helped
I’m here to put a plug in for floradix and progesterone only BC pills
In context ↗ - COVID vaccination (mRNA) · Helped
I’ve only had them improve my LC a bit or not change it at all.
In context ↗
Approaches: H2 blockers · Other drugs and medicines · Pacing · Physiotherapy and rehab · Sex hormones · Stimulants · 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 12 months after onset: the story doesn’t say how ill they were before that. 1 step has no time and sits in story order between the steps around it. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| April 2020 | got long COVIDI got long covid April 2020 as wellIn context ↗ | Not stated | |
| early LC (first year and a half) | bed bound with severe cognitive problems and crashes bringing new symptomsI was so bad cognitively I couldn’t understand tv or movies that I’d seen before. Or read.In context ↗ | Severe | |
| — | out of bed and able to do light exercise after a dysautonomia PT programmeby month two I stopped the program because it was too easy for me. I was no longer bed bound and could do other kinds of light exercise.In context ↗ | Moderate | Graded rehab and self-made programmes |
| 2024 | started stimulants after four years of long COVID; life changingThey’ve been life changers for me.In context ↗ | Mild | Methylphenidate (Ritalin, Concerta) |
| 2025 | reached about 70% of normalGot back to 70% normalIn context ↗ | Mild | |
| August 2025 | reinfection with COVID set them backwas reinfected and bounced right back (after about a month of acute COVID recovery)In context ↗ | Not stated | |
| September 2025 | crashes milder and no new symptoms with each crashmy crashes aren’t so bad and they don’t come with new symptomsIn context ↗ | Near normal |
Adverse events
- Craniosacral therapy“Craniosacral therapy - made my headaches soooo much worse” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migraineHeart symptoms & palpitationsMuscle weaknessPOTS & dysautonomiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Brain fog
I was so bad cognitively I couldn’t understand tv or movies that I’d seen before. Or read.
In context ↗ - Post-exertional malaise
my crashes aren’t so bad and they don’t come with new symptoms
In context ↗ - Headaches & migraine
Together those medications have gotten rid of 90% of my migraines
In context ↗ - Heart symptoms & palpitations
many other LC symptoms (palpitations, fatigue, brain fog, muscle weakness, heat intolerance, etc)
In context ↗ - POTS & dysautonomia
stimulants both treat adhd and dysautonomia (which I believe is part of my long covid situation)
In context ↗ - Anxiety & low mood
Low level anxiety and depression I didn’t even realize lifted
In context ↗
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