Long COVID
Severe → near normalIll 5 years before improving or writingNeeds ongoing treatment
Bedbound months with long COVID, now near normal after liquid iron and simpler life abroad
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Sep 2025
In their words
- Condition: Long COVID
started with my covid infection March 2020 and there were no posts about this symptom at that time
In context ↗ - At worst: Severe
couldn't move, bedbound for around 3 months ... never down to like 20% which is what the first couple of years were
- Now: Near normal
I'm walking and cycling again, living pretty much a normal life ... I'm finally almost better, but took around 5 years to disappear. If I get less than 9 hours sleep I wake up with burning pain
- Began after: COVID
started with my covid infection March 2020
Read from 46 of their posts and comments; links to the 23 this page draws on
Summary
Stream 78234 caught COVID in March 2020 at 24 and spent about two years at 20% of normal, bedbound for months with daily burning skin pain, fevers, POTS and brain fog. From late 2023 she credits high-dose liquid iron plus a simpler life abroad, with sun and less work and stress, for a slow climb to about 80%. By September 2025 she was walking and cycling again, though new numbness and weakness had begun after a suspected neck injury in 2024.
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What they tried
What they credit
Also tried
amitryptaline· Helped · wore offvarious high dose antihistamines· Helped · wore offB vits· Helpedmuch cleaner diet· Helpedupped salt and water intake· Helpedcompression socks· Helpedpacing· No changespiritual doctor· No changeclinical trial at UCLH· No changeantibiotics· Worseanti-depressants· Not saidlow histamine diet· Not saidsugar free diet· Not saidgluten free diet· Not saidno alcohol· Not saidtumeric capsules· Not saidvitamin D· Not saidlong periods of excess rest· Not saidweed (edibles or just plain CBD)· Not saiddesensitisation therapy· Not saidsmall electric shocks· Not saidmassage machine· Not saidmanuka honey· Not saidspike mats· Not saidosteopath· Not saidDoxycycline (Vibramycin)· Not said
Their words about each treatment
- thyroxine · Helped
Also I started taking thyroxine properly as of a few weeks ago, as I used to take it with coffee which impacts absorption, and since taking it with no food etc I do feel a bit better.
In context ↗ - pacing · No change
I found pacing didn't help me
In context ↗ - frequent exercise when I could manage it · Helped
and frequent exercise when I could manage it did help too
In context ↗ - antibiotics · Worse
I also had an extreme reaction to doxycycline after not having issues with antibiotics for all my life!
In context ↗ - anti-depressants · Not said
anti-depressants (thank you doctor who gaslit me, luv u)
In context ↗ - amitryptaline · Helped
amitryptaline worked somewhat, for a short period, but would wear off unless I kept doubling the dose
In context ↗ - various high dose antihistamines · Helped
I also found anti-histamines to be helpful for six months or so in 2021
In context ↗ - low histamine diet · Not said
low histamine diet
In context ↗ - sugar free diet · Not said
sugar free diet
In context ↗ - gluten free diet · Not said
gluten free diet
In context ↗ - tumeric capsules · Not said
tumeric capsules
In context ↗ - vitamin D · Not said
vitamin D (both tablet form and winter sun trips abroad to catch rays)
In context ↗ - long periods of excess rest · Not said
long periods of excess rest, and periods of forced activity
In context ↗ - ice showers, cold water spraying and cold water swimming · Helped
ice showers and spraying myself with cold water relieves the pain for a good 5 to 10 minutes
In context ↗ - weed (edibles or just plain CBD) · Not said
weed (edibles or just plain CBD)
In context ↗ - desensitisation therapy · Not said
desensitisation therapy (aka scrubbing/scratching the shit outta myself)
In context ↗ - small electric shocks · Not said
small electric shocks
In context ↗ - massage machine · Not said
massage machine
In context ↗ - manuka honey · Not said
guzzled bathtubs of manuka honey
In context ↗ - spike mats · Not said
used spike mats
In context ↗ - spiritual doctor · No change
made an appointment with a spiritual doctor who did a funky thing with a warm rug and called me beautiful until I cried
In context ↗ - liquid iron · Helped a lot
Drinking lots of liquid iron has been the single most effective thing I have tried.
In context ↗ - B vits · Helped
Since taking high high high dose iron and B vits daily, my skin pain lessened.
In context ↗ - reduced connectivity and exertion · Helped
I exert myself *dramatically* less physically and emotionally
In context ↗ - much cleaner diet · Helped
I eat a much cleaner diet
In context ↗ - clinical trial at UCLH · No change
i did a clinical trial with them too (it didn't help
In context ↗ - upped salt and water intake · Helped
have massively upped my salt and water intake
In context ↗ - compression socks · Helped
compression socks have really helped
In context ↗ - osteopath · Not said
An osteopath gave me an idea but I want to see results from their treatment before celebrating.
In context ↗ - Doxycycline (Vibramycin) · Not said
I also had an extreme reaction to doxycycline after not having issues with antibiotics for all my life! ... My face swelled up and my whole body had a rash, and I was wiped out for days.
In context ↗
Approaches: Alternative therapies · Exercise and activity · Pacing · Supplements · Thyroid hormones
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 2020 | COVID-19 infection: loss of smell, chest pains, feverI had C19 way back in March. Classic case - loss of smell, chest pains, feverIn context ↗ | Moderate | |
| 2020 | bedbound for about three months; first two years at roughly 20% of normalsteps were near 0, couldn't move, bedbound for around 3 monthsIn context ↗ | Severe | |
| May 2021 | relapse after birthday gatheringThe 48 hours after... I was flinching dressing myself again, couldn't sleepIn context ↗ | Severe | |
| November 2022 | still daily skin pain but no longer bedboundI've not been bed bound for a whileIn context ↗ | Moderate | |
| March 2023 | two months of extreme fatigue, awake only a few hours a dayI was (even for my usual Long Covid) uncharacteristically fatigued for a couple of months - it meant I would be awake for only a few hours each dayIn context ↗ | Severe | |
| late 2023 | stopped flaring daily after liquid iron and a simpler life abroadDrinking lots of liquid iron has been the single most effective thing I have triedIn context ↗ | Mild | Iron infusion / ferritin repletion |
| early January 2024 | relapse after Christmas socialising and exertionwith a nasty relapse last weekIn context ↗ | Moderate | |
| 2024 | back to full-time work, weekend walks and morning swimmingI really had got to a point where I was managing full time work againIn context ↗ | Near normal | Iron infusion / ferritin repletion |
| December 2024 | after a neck injury, progressive muscle weakness and numbness, off workslowly losing muscle strength and have loss of sensation in all limbs day by dayIn context ↗ | Moderate | |
| September 2025 | almost better; walking and cycling againI'm walking and cycling again, living pretty much a normal lifeIn context ↗ | Near normal |
Adverse events
- Amitriptyline (Elavil)“First week on it was a little rough but I'm glad I started taking it now” In context ↗ Side effects
- Doxycycline (Vibramycin)“I also had an extreme reaction to doxycycline after not having issues with antibiotics for all my life! ... My face swelled up and my whole body had a rash, and I was wiped out for days.” In context ↗ Allergic reaction / anaphylaxis
- Amitriptyline (Elavil)“eventually I became spaced out on the higher dose, and the pain was still really bad so I decided to come off” In context ↗ Side effects
- Amitriptyline (Elavil)“but that came at a price of sleeping even more, needing more and more dosage, and losing myself” In context ↗ Side effects
- Iron infusion / ferritin repletion“I found iron *tablets* made me constipated and nauseous” In context ↗ Gut side effects
Symptoms mentioned
Flu-like symptomsLoss of smell or tasteMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I usually know when they're coming because I'll have over exerted and made multiple plans
In context ↗ - POTS & dysautonomia
The POTS is less of a problem, but does appear if I'm having a relapse/bad flare/feeling weak.
In context ↗ - Sleep problems
If I get less than 9 hours sleep I wake up with burning pain
In context ↗ - Pain & fibromyalgia
some days I can't walk, brush my teeth or walk upstairs without wincing in pain
In context ↗ - Muscle weakness
Legs, arms and bum feel like they've done a full workout after doing something minor sometimes.
In context ↗ - Flu-like symptoms
a light fizzing coupled with flu-y head
In context ↗ - Temperature regulation
I have stopped taking my temperature because I got so bored of seeing a low-grade fever every day
In context ↗ - Loss of smell or taste
Classic case - loss of smell, chest pains, fever
In context ↗
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