Long COVID
Severe → much betterIll 18 months before improving or writing
Long COVID nerve pain, spasms and brain fog, now much better with rest and pacing
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 18 months
- Last post
- Mar 2025
In their words
- Condition: Long COVID
I'm over 2.5 years into this and went through really hopeless periods.
In context ↗ - At worst: Severe
I was in a similar state at about the same time into it as you are now.
In context ↗ - Now: Much better
I'm not back up at 100%, but I've recovered a lot from that long, deep trough.
In context ↗ - Began after: a vaccination
The Pfizer vaccine was the start of my downhill journey, within 24 hours of the first shot.
In context ↗
Read from 83 of their posts and comments; links to the 35 this page draws on
Summary
A man in British Columbia developed nerve pain and spasms after his first Pfizer dose in 2021, worsening after COVID and omicron; he also had brain fog and mood changes. By 19 months he reported roughly 75% of his old function. After more than a year of push-crash cycles he took six months off for deep rest and pacing with a long-COVID clinic, which made a big difference. He was still not fully recovered, with arm nerve pain and tinnitus.
Ask Miruvor AI
What they tried
What they credit
Also tried
psilocybin mushrooms (microdosing)· Helpedopioids after surgery· HelpedAleve and Tylenol· Helpedsalt water, fluids and compression socks· Helpedsalt water, fluids and compression socks· Helpedlong-COVID clinic program· Helpedgabapentin· Helpedlow-histamine diet· Helpeddaily antihistamines· Helpedtinnitus masking audio· HelpedFitbit and the Visible app· Helpedinhaled asthma medication· HelpedTHC oil· HelpedNovavax booster· No changeketo diet· No changeWim Hof hot-cold alternating showers· Worsetherapy / CBT· Not said
Their words about each treatment
- psilocybin mushrooms (microdosing) · Helped
starting microdosing with psilocybin mushrooms helped me turn a corner in the early stages of recovery
In context ↗ - hernia surgery · Helped
I had surgery on a hernia during a pretty awful period in my LC recovery process. It was probably actually beneficial.
In context ↗ - opioids after surgery · Helped
the opioids in the first week post-surgery not only reduced the pain from the surgery, but also masked the chronic pain from the neurological conditions I have from LC
In context ↗ - Aleve and Tylenol · Helped
I'll take a combo of aleve and Tylenol for pain relief when it gets worse
In context ↗ - salt water, fluids and compression socks · Helped
Drinking lots of water, including a bit of salty water, and especially first thing in the morning, helps to increase your blood volume
In context ↗ - long-COVID clinic program · Helped
I've been working with a covid clinic for about a month now, and it has been very positive
In context ↗ - pacing · Helped a lot
Now I'm carefully tracking activity, heart rate, and symptoms to follow a pacing method and it's working much better for me
In context ↗ - Wim Hof hot-cold alternating showers · Worse
the hot-cold alternating showers was terrible for my dysautonomia and neurological issues generally
In context ↗ - gabapentin · Helped
I used it for neuropathy for about a year, at the highest dose I could take (1200, 3x daily). It helped, but it also made me feel off
In context ↗ - cutting out hot showers · Helped
it has been pacing, cutting out hot showers, and breathwork, all of which is aimed at calming the parasympathetic nervous system
In context ↗ - breathing exercises and mindfulness · Helped
Mostly pacing, regular breathing exercises, and mindfulness
In context ↗ - Novavax booster · No change
I did get Novavax for a booster, and I had no side effects from it at all
In context ↗ - low-histamine diet · Helped
Low histamine was better for my symptoms
In context ↗ - daily antihistamines · Helped
I take antihistamines, and they do help
In context ↗ - disciplined sleep schedule · Helped
as did disciplined sleep schedule
In context ↗ - tinnitus masking audio · Helped
using tinnitus masking audio to train my brain not to pay attention to it has helped
In context ↗ - Fitbit and the Visible app · Helped
I combine that with the Visible app for daily recording of symptoms and HR variability for a morning readiness score
In context ↗ - six months off for deep rest · Helped a lot
I finally embraced the need for real, deep rest after over a year and a half of LC push-crash cycles
In context ↗ - gradually re-introducing activity · Helped
resting and following an approach of gradually re-introducing activity was critical to the recovery process for me
In context ↗ - keto diet · No change
Tried it. Didn't do much for me.
In context ↗ - SSRI · Helped
I believe going onto an SSRI was helpful for me
In context ↗ - time · Helped
Primarily, i think it just took time and real rest to heal
In context ↗ - therapy / CBT · Not said
Personally, I have done all of these.
In context ↗ - inhaled asthma medication · Helped
it helps to keep my breathing deeper all the time and helps a lot with getting deeper more restful sleep
In context ↗ - THC oil · Helped
I've found ingesting a little oil helps a lot with my neuropathy
In context ↗ - Valtrex · Helped
I did feel like something with my LC changed for the better after the first time I took it
In context ↗
Approaches: POTS medication · Antivirals · Mind-body practices · Other drugs and medicines · Pacing · Physiotherapy and rehab · Radical rest · Surgery & structural
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. 2 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2021 | First Pfizer dose; neurological symptoms beganThe Pfizer vaccine was the start of my downhill journey, within 24 hours of the first shot.In context ↗ | Moderate | |
| 2022 | worse after COVID and omicronthings got worse after getting COVID, and the most extreme was actually after omicronIn context ↗ | Moderate | |
| first year of LC | psilocybin microdosing cleared brain fog and anxietyfor me microdosing felt like a turning point in my recovery from brain fog during the first year with LCIn context ↗ | Moderate | |
| about 16 months in | second infection brought back old and new symptomssome of the worst I experienced was following a second infection at around that point that was very mild at the time but which brought back old symptoms and some new ones.In context ↗ | Severe | |
| 2023 | improved to about 75% of old selfI'm currently still not fully recovered, but am massively improved from where I was. I would say I'm back to 75% of what I used to be, maybe more.In context ↗ | Mild | Pacing and the energy envelope |
| 2024 | recovered a lot, still not at 100%I'm not back up at 100%, but I've recovered a lot from that long, deep trough.In context ↗ | Mild |
Adverse events
- Cryotherapy and cold exposure“The breathing isn't so bad, but the hot-cold alternating showers was terrible for my dysautonomia and neurological issues generally.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“going into ER thinking I may have had a stroke because of losing control of my arm on that side, having some speech issues, and my face drooping a bit on one side.” In context ↗ ER visit
- COVID vaccination as treatment“I still got the second Pfizer dose because I wasn't allowed to get anything else, and because my neurologist still advised I do so, and that made things worse.” In context ↗ Made symptoms worse
- “Local anesthetics did raise my heart rate quite a bit, but the dentist just gave me more time and it came back down.” In context ↗ Heart rhythm problems
- Radical rest“I lost cardio conditioning via resting so much, which was upsetting in itself as it felt like another step back at the time” In context ↗ Other
- Graded rehab and self-made programmes“the specialists have given advice that made things worse, like a cardiologist that advised more intense physical activity.” In context ↗ Made symptoms worse
- Gabapentin (Neurontin)“It helped, but it also made me feel off, and it was hard at times to tell what was brain fog and what was the gabapentin.” In context ↗ Side effects
- Gabapentin (Neurontin)“It also has withdrawal symptoms, so it's a ramp up and ramp down kind of drug, and, as I discovered when I ran out and couldn't get a prescription file for a couple of days, you do not want to stop cold turkey.” In context ↗ Withdrawal problems
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migraineMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseTinnitus
Their words about their symptoms
- Post-exertional malaise
was trapped in a cycle of pushing and crashing for over a year
In context ↗ - Brain fog
to not being able to read a paragraph without struggling
In context ↗ - POTS & dysautonomia
I used to do Wim Hof before getting LC with dysautonomia, but not anymore.
In context ↗ - Mast cell (MCAS) & allergies
High-histamine foods and overexertion are the factors I can most directly tie to a flare-up.
In context ↗ - Pain & fibromyalgia
masked the chronic pain from the neurological conditions I have from LC
In context ↗ - Headaches & migraine
This sounds similar to what I always call brain fire, and it's definitely the most debilitating of my symptoms.
In context ↗ - Neuropathy & tingling
I still have some nerve pain in my arm that has never gone away
In context ↗ - Tinnitus
It also goes along with tinnitus for me
In context ↗ - Anxiety & low mood
That has gradually moderated over several years now, but I still experience that to some degree if I'm in a crash.
In context ↗
Ask Miruvor AI
Similar stories
-
Housebound with long COVID, now much better with pacing and breathwork
They fell ill with long COVID after a COVID infection in July 2024 and were housebound by September with fatigue, DPDR, severe anxiety, insomnia, POTS and nausea. They credited pacing, breathwork, diet changes, supplements, propranolol, LDN and a graded…
-
Bedridden much of the first two years with long COVID, now much better with time and rest
Developed long COVID in early 2020 and was bedridden for much of the first two years, at times unable to speak clearly. Time, rest, high-dose antihistamines, magnesium, CoQ10 and a very slow increase in walking were credited, after spending much of a…
-
Long COVID with brain fog and POTS, now around 90% of normal after rest and saunas
Tide 94699 caught COVID in March 2024 and spent the first months sleeping day and night, with brain fog, POTS, headaches and GI and vision problems. Rest, daily saunas, antihistamines, nicotine patches and gradually longer walks were credited as things…
-
Bedbound at worst with ME/CFS, much better after hysterectomy and testosterone
Zephyr 24996 had ME/CFS since childhood, over 30 years, ranging from mild to very severe and totally bedbound. A hysterectomy and testosterone took them from severe to mild; pacing, rest, a powerchair and overnight oxygen brought further gains to moderate.…