ME/CFS
Severe → relapsedIll 7 months before improving or writing
Bedbound nine months with ME/CFS, better on LDN and celecoxib then relapsed
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 7 months
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
have been Dx w LC, MECFS, dysautonomia and a vagus nerve disorder
In context ↗ - At worst: Severe
It was bad when I was at my worst (bedbound except for toileting).
In context ↗ - Now: Relapsed
Since Jan 2022, was at about 60% now crashed and housebound again
In context ↗ - Began after: COVID
sick since Jan 2022
In context ↗
Read from 13 of their posts and comments; links to the 10 this page draws on
Summary
Heron 85311 became ill with long COVID in January 2022 and was bedbound except for toileting for about nine months. Low-dose naltrexone worked wonders on fatigue and celecoxib eased severe leg and joint pain, though celecoxib was stopped because of bleeding in the brain. By late 2023 a crash left them housebound, and by late 2024 they hovered between moderate and severe, unable to work, with numbness, tingling and failing vision.
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What they tried
Also tried
LDN· Helped a lotacupuncture· HelpedCelebrex· Helpedsupplements from acupuncture/functional medicine doc· Helpedcompression socks / sports compression wrap· HelpedCOVID vaccination· Helped · wore offCymbalta· Helpedpacing· Not said
Their words about each treatment
- acupuncture · Helped
Acupuncture has been incredibly helpful for me - pain relief, fatigue relief. 15 months averaging 1/week sessions.
In context ↗ - LDN · Helped a lot
Yes. I’ve been on 6 mgs for a year, was on 4.5 to start - sick since Jan 2022. It worked wonders on my fatigue
In context ↗ - Celebrex · Helped
Celebrex relieved the terrible leg pain I had for months.
In context ↗ - supplements from acupuncture/functional medicine doc · Helped
I’ve also tried a lot of supplements from acupuncture/functional medicine doc. One of them really helps, no idea what others do so have largely stopped them.
In context ↗ - compression socks / sports compression wrap · Helped
I had compression socks and one day just put it on my arm - the tingles, pain and aching went away slowly - over about 20 minutes.
In context ↗ - COVID vaccination · Helped
I was encouraged to get them and have felt better for several days after each of the two I’ve had while having long covid
In context ↗ - Cymbalta · Helped
Works, kinda sorta not as well as my beloved Celebrex ... It alleviates my muscle pain about 50% as well as Celebrex and my joint pain not at all
In context ↗ - pacing · Not said
I still find it really hard to pace well enough to avoid crashes. My crashes do seem to last less long than they used to however
In context ↗
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 9 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| January 2022 | Became ill with long COVIDsick since Jan 2022In context ↗ | Not stated | |
| about 9-10 months in | In bed for about 9-10 months, bedbound except for toiletingWas in bed for about 9-10 months. ... (bedbound except for toileting) | Severe | |
| 2023 | Low-dose naltrexone worked wonders on fatigue; was at about 60%It worked wonders on my fatigueIn context ↗ | Mild | Low-dose naltrexone |
| October 2023 | Crashed and became housebound againwas at about 60% now crashed and housebound againIn context ↗ | Moderate | |
| January 2025 | Hovering between moderate and severe, stopped workingI now seem to hover between moderate and severe. Had to stop workingIn context ↗ | Moderate |
Symptoms mentioned
Loss of smell or tasteMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseVision problems
Their words about their symptoms
- Post-exertional malaise
I still find it really hard to pace well enough to avoid crashes. My crashes do seem to last less long than they used to however
In context ↗ - Pain & fibromyalgia
Now wo it every days is painful. Some days my right arm (I am right handed) can’t grip a spoon, can’t lift a cup.
In context ↗ - Neuropathy & tingling
my skin tingles all the time
In context ↗ - POTS & dysautonomia
have been Dx w LC, MECFS, dysautonomia and a vagus nerve disorder
In context ↗ - Muscle weakness
It’s often bad - vertigo, weakness etc
In context ↗ - Vision problems
I can’t see - cataracts came on and grew like gangbusters in just 18 months
In context ↗ - Loss of smell or taste
My taste and smell go off every now and then
In context ↗