Bedbound with long COVID and suspected ME/CFS, pain somewhat better on low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2.5 years
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
the worsening symptoms weren’t from the MCTD but rather the ME/CFS and all that.
In context ↗ - At worst: Severe
I can’t even get out of bed for more than 5-10 minutes at a time.
In context ↗ - Now: Somewhat better
it helped my pain a lot but didn’t help the brain fog, unfortunately.
In context ↗ - Began after: COVID
I have been battling this for a couple of years ... since I got covid in 2022
In context ↗
Read from 11 of their posts and comments; links to the 10 this page draws on
Summary
Crane 86213, who has long COVID and mixed connective tissue disease and suspects ME/CFS, was bedbound by November 2024, up only 5-10 minutes at a time and off work since July. Low-dose naltrexone at 4.5 mg cut her pain from 8/10 to 4/10 but did nothing for her brain fog. She was still on medical leave in December 2024.
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What they tried
What they credit
Also tried
Their words about each treatment
- vaping nicotine · Helped
I started vaping nicotine since I got covid in 2022 ... ”I helps me focus”
In context ↗ - plaquenil · Helped
it’s starting to work on some of my symptoms but others were getting worse
In context ↗ - cymbalta · Not said
she started me on cymbalta (I also have terrible neuropathy)
In context ↗ - LDN · Helped
When I started LDN, it was a game changer for my pain. ... It brought it down to 4/10
In context ↗ - B12 · Helped
my B12 and Vitamin D were super low. Once I supplemented , the bleeding went away
In context ↗ - deep breathing · Not said
I do very simple deep breathing. ... I’ll do it more when I’m in a crash
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| 2022 | COVID-19; illness beganI have been battling this for a couple of years ... since I got covid in 2022In context ↗ | |
| 2024-11-04 | bedbound, off work since Julymy symptoms have continued to get worse and worse to the point that I can’t even get out of bed for more than 5-10 minutes at a timeIn context ↗ | |
| 2024-12 | pain fell from 8/10 to 4/10When I started LDN, it was a game changer for my pain ... It brought it down to 4/10 unless I’m in a Lupus flare.In context ↗ | Low-dose naltrexone |
| 2025-01-10 | still on medical leave; brain fog unchangedit helped my pain a lot but didn’t help the brain fogIn context ↗ | Low-dose naltrexone |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
others were getting worse and we realized it's PEM
In context ↗ - Brain fog
The brain fog feels like dementia to me.
In context ↗ - Neuropathy & tingling
I also have terrible neuropathy
In context ↗ - Pain & fibromyalgia
was always in 8/10 pain. It brought it down to 4/10 unless I’m in a Lupus flare.
In context ↗ - Gut problems
GI issues, sores in my mouth, generalized “feeling stiff”. Those symptoms aren’t 100% gone
In context ↗
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