Long COVID severe and bedbound, now somewhat better with pacing and Suboxone
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6 years
- Last post
- Aug 2026
In their words
- Condition: Long COVID
I got covid and then long covid.
In context ↗ - At worst: Severe
I'm no longer severe and bed bound. Still moderate and house locked often, but it's better.
In context ↗ - Now: Somewhat better
I'm no longer severe and bed bound. Still moderate and house locked often, but it's better.
In context ↗ - Began after: COVID
I woke with covid during the pandemic (I was a nurse) and ot was pretty instant.
In context ↗
Read from 75 of their posts and comments; links to the 29 this page draws on
Summary
Kite 23972, a nurse, developed long COVID in 2020 and became severe, unable to walk about 20 steps to the bathroom without a nap. She credited aggressive pacing and rest, THC, muscle relaxers, therapy and later Suboxone with moving from bedbound to moderate, though she still could not drive or cook. Pain fell from 8+ to 2-4 on Suboxone; by mid-2026 she was still sick almost six years in.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped a lot
therapy 2x/wk and pacing, Dr's who fully believe me
In context ↗ - radical rest / aggressive rest · Helped
radical rest and pacing, tons of therapy
In context ↗ - therapy 2x/wk · Helped
I have been innit 2x/wk for 4yrs since I got sick. It's helped a lot.
In context ↗ - THC / marijuana · Helped a lot
I use thc in the am when i can't move because my whole body feels ick/sick/nauseated.
In context ↗ - suboxone / buprenorphine · Helped a lot
I am SIGNIFICANTLY better and mildly functioning now, thanks to it.
In context ↗ - supplements · No change
Supplements, nope! Not a bit. I tried everything.
In context ↗ - muscle relaxer (methocarbamol / Robaxin) · Helped
Methocarbomal (robaxin?) Is the only one that helps me. I take 1500mg 2-4x/day.
In context ↗ - lidocaine patches · Helped
the 2 things that help are lidocaine patches (on the buttcheek fit the labia) and topical thc from the dispensary
In context ↗ - changing diet / low carb · No change
Changing diet has helped zilch, zero, nada.
In context ↗ - ivermectin · No change
I even took ivermectin. None of it helped.
In context ↗ - vitamin C · Helped
I take 1000 or 2000mg of Vit C every day, and it's been very good to me.
In context ↗ - Nuedexta · Helped a lot
my neurologist put me on nuedexta. It fixed it.
In context ↗ - antacids · Not said
All I take is muscle relaxers for clenching, suboxone for pain, and antacids.
In context ↗ - Zicam · Not said
I also use zicam at times.
In context ↗ - phentermine · Worse
phentermine is causing horrible jaw clenching
In context ↗ - COVID vaccination as treatment · Not said
I got flu and covid shots together. I was down with ickyness for about 36hrs or so, but then I was better and I feel good about it lol!
In context ↗ - Sinus, jaw and tonsil surgery · Not said
I will say- the recovery is hell. The worst 2 wks ever.
In context ↗
Approaches: CBT & mindset · Other drugs and medicines · Pacing · Radical rest
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 |
|---|---|---|---|
| Halloween 2020 | COVID infection while working as a nurse; long COVID beganI woke with covid during the pandemic (I was a nurse) and ot was pretty instant.In context ↗ | Severe | |
| 2021-2022 | Lowest point; could not walk to the bathroom and back without a nap5yrs ago I couldn't even make it to the bathroom and back, about 20 steps, without a nap.In context ↗ | Severe | |
| 2024-10-03 | Improved from moderate/severe to mild/moderate after pacingI'm not nearly as bad as I was 2yrs ago- I was mod/severe, now I'm mild/mod. I spend 75%+ in bed.In context ↗ | Moderate | Pacing and the energy envelope |
| 2025-03-13 | Suboxone relieved long-standing pain and improved functioningI am SIGNIFICANTLY better and mildly functioning now, thanks to it.In context ↗ | Mild | |
| 2025-08-10 | Bedlocked after two weekends of children's eventsmy son had a show Fri and Sat, and so I have been bedlocked since yesterday (Sat) evening when I got home.In context ↗ | Severe | |
| 2026-08-10 | Still ill almost six years in; pain improved on SuboxoneStill sick. Almost 6yrs. ... Suboxone- pain. Pain at 8+ for yrs is now 2-4 | Moderate |
Adverse events
- Phentermine (Adipex)“phentermine is causing horrible jaw clenching” In context ↗ Side effects
- COVID vaccination as treatment“I got flu and covid shots together. I was down with ickyness for about 36hrs or so, but then I was better and I feel good about it lol!” In context ↗ Side effects
- Sinus, jaw and tonsil surgery“I will say- the recovery is hell. The worst 2 wks ever.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
if i walked for a half hr for a day, maybe 2- id be stuck in bed for 3mo.
In context ↗ - Brain fog
severe brain fog
In context ↗ - POTS & dysautonomia
My LC is dysautonomia/neurological
In context ↗ - Sleep problems
I still sleep 14hrs day/night
In context ↗ - Pain & fibromyalgia
Suboxone- pain. Pain at 8+ for yrs is now 2-4
In context ↗ - Headaches & migraine
talking to people or sounds or lights make my head hurt like a cheese grater.
In context ↗ - Gut problems
my intestines are revolting
In context ↗ - Light & noise sensitivity
lights and noise are too much
In context ↗ - Heart symptoms & palpitations
my heart is in the 30s while I sleep and my O2 is in the 70s
In context ↗ - Muscle weakness
my spaghetti limbs are not long lasting
In context ↗ - Neuropathy & tingling
my entire groin is dead
In context ↗ - Anxiety & low mood
I'm the least depressed I have ever been
In context ↗ - Temperature regulation
I have hot flashes all through the night
In context ↗
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