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Long COVID Severe → near normalIll 6 months before improving or writingNeeds ongoing treatment

Couch-bound with long COVID, now almost back to normal after guanfacine and walking

Condition
Long COVID
At worst
Severe (mostly bedbound)
Ill before improving or writing
6 months
Last post
Feb 2024
In their words
  • Condition: Long COVIDCovid infection July 2022, fully vaccinated prior, mild initial infection that quickly progressed to PEM and brain fog. In context ↗
  • At worst: SevereI was fully laid up and could barely walk 10 mins around the neighborhood In context ↗
  • Now: Near normalI wouldn't say I'm fully recovered, but I am mostly back to normal life, figuring out my new limitations. In context ↗
  • Began after: COVIDI originally had COVID in July 2022
  • Says they never had: BreathlessnessVery fortunately, I avoided shortness of breath or cardiopulmonary abnormalities.
Read from 24 of their posts and comments; links to the 12 this page draws on

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Summary

Long COVID followed a mild infection in July 2022, with PEM, brain fog and sensory overload and about two months couch-bound. Brain fog did not improve for six months until 1mg guanfacine nightly eased it within weeks; a slowly ramped walking programme rebuilt stamina. Full-time work resumed, but a September 2023 hike crash and an October COVID reinfection set progress back. Now mostly back to normal life, not fully recovered.

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What they tried

Their words about each treatment
  • guanfacine · Helped a lotTaking guanfacine 1mg daily as prescribed for four weeks has alleviated 90% of my brain fog symptoms. In context ↗
  • slow and steady exercise (walking) · Helpeddo a small amount of manageable physical work/exercise every day for a week, then increase by 10% In context ↗
  • ultra-low carb diet · WorseI also tried an ultra-low carb diet for a while, which seemed to help a bit. However, I started getting headaches and fatigue In context ↗
  • N-acetyl L-cystine (NAC) · HelpedI had noticed no effect at the lower dose, but seem to have more energy with the higher dose. In context ↗
  • molnupiravir · Not saidFortunately, I found out before I was symptomatic and took one of the newer anti-virals, molnupiravir. In context ↗
  • heart rate monitor · HelpedGetting a heart rate monitor really helped as well. Being aware of HR changes helped me calibrate level of exertion much better. In context ↗

Approaches: Other drugs and medicines · Pacing · Physiotherapy and rehab

Their path

Very severeSevereModerateMildNear normalRecoveredonset6 mo12 mo

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
WhenWhat happenedWhere they wereAfter
July 2022mild COVID infection, then PEM and brain fogI originally had COVID in July 2022 and have been on disability leave since I used up my sick days. In context ↗Mild
September 2022two months couch-only, on disability leavewhen I was first trying to get active after 2 months of basically couch-only life, my baseline was a 10 minute walk at a relatively slow pace In context ↗Moderate
December 2022PEM improved rapidly before guanfacine, walking 5km+ dailymy post-exertional exhaustion had improved rapidly and greatly. I went from being totally wiped out after a slow 1km walk to comfortably walking 5km+ every day. In context ↗Mild
January 2023brain fog 90% better on guanfacine, still on disability leaveTaking guanfacine 1mg daily as prescribed for four weeks has alleviated 90% of my brain fog symptoms. In context ↗MildGuanfacine
March 2023returned to full-time work and was exhausted dailyThe first couple of weeks back, I was totally exhausted at the end of every day and needed a fully immobile weekend to recover. In context ↗Mild
July 2023brain fog and PEM continuing to improve, drove across the USMy bad days with brain fog are now exceedingly rare! In context ↗MildGuanfacine
September 2023overdid a hike, incapacitated for two weeksAfter doing probably a 40% harder hike than I'd done previously, I was basically fully incapacitated for 2 weeks. In context ↗Severe
October 2023second COVID infection, asymptomatic, took molnupiravirI got COVID for the 2nd time in October. In context ↗Mild
December 2023back on the slow and steady recovery path, mostly back to normal lifeI wouldn't say I'm fully recovered, but I am mostly back to normal life, figuring out my new limitations. In context ↗Near normalGuanfacine

Adverse events

  • Guanfacine“The first week or two I had some noticeable but manageable side effects: lightheadedness bordering on dizziness when standing up, multiple times a day.” In context ↗ Low blood pressure or fainting
  • Guanfacine“I've definitely had some distressing dizzy spells even a few months in. Usually when I go from sitting for a long time to standings.” In context ↗ Low blood pressure or fainting
  • Keto and low-carb diets“I also tried an ultra-low carb diet for a while, which seemed to help a bit. However, I started getting headaches and fatigue, because I think I took it too extreme for my body.” In context ↗ Made symptoms worse

Symptoms mentioned

Their words about their symptoms
  • Post-exertional malaiseI still suffer from PEM if I overdo it physically or mentally In context ↗
  • Brain fogI have occasional focus and memory lapses In context ↗
  • POTS & dysautonomiaBrain fog, PEM, (undiagnosed but likely) POTS In context ↗
  • Headaches & migrainelonger than 15 minutes of focus and I'd start to get headaches and feel panicky In context ↗
  • Sleep problemsa particularly bad night of insomnia, which will snowball into a couple of rough days of brain fog In context ↗
  • Light & noise sensitivityToo much background noise, bright lights, and strong smells could all cause a flare-up In context ↗
  • Anxiety & low moodessentially causing panic attack-like symptoms In context ↗
  • Gut problemsOther than an upset stomach (too much sugar), I was pretty much OK the next day In context ↗
  • Pain & fibromyalgiaIntense muscle soreness that wouldn't go away In context ↗

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