ME/CFS
Moderate → no benefitIll for 14 years
Down for most of 14 years with ME/CFS, still exhausted after Benlysta
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 14 years
- Last post
- Jul 2025
In their words
- Condition: ME/CFS
I've been "down" for most of 14 yrs.
In context ↗ - At worst: Moderate
he encourages me to sit out back for the sun, but I never do
In context ↗ - Now: No benefit
I did get better with flairs for sure but I'm still exhausted.
In context ↗
Read from 7 of their posts and comments; links to the 4 this page draws on
Summary
A Reddit user who has been down for most of 14 years describes being exhausted, with shallow breathing for 10 years. Weekly Benlysta, a lupus shot, brought fewer flares but they remain exhausted. They tried low-dose naltrexone about six years ago and felt they were going to die at 0.10 mg, and may try it again. Depression eased after they moved into the living room.
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What they tried
Also tried
Benlysta· HelpedLDN· Worse
Their words about each treatment
- LDN · Worse
I tried it 6 yrs ago and thought I was going to die at .10 mgs!
In context ↗ - Benlysta · Helped
I started on Benlysta, a Lupus shot weekly that kills T cells. I did get better with flairs for sure but I'm still exhausted.
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. 1 step has no time and sits in story order between the steps around it. 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 |
|---|---|---|---|
| onset | ME/CFS began; down for most of the following yearsI've been "down" for most of 14 yrs.In context ↗ | Moderate | |
| about six years before July 2025 | tried low-dose naltrexone at 0.10 mg and felt they were going to dieI tried it 6 yrs ago and thought I was going to die at .10 mgs!In context ↗ | Not stated | Low-dose naltrexone |
| — | started weekly Benlysta for lupus; fewer flares but still exhaustedI started on Benlysta, a Lupus shot weekly that kills T cells. I did get better with flairs for sure but I'm still exhausted.In context ↗ | Moderate | |
| 2025-07 | still down and exhausted after about 14 years; may retry LDNI've been "down" for most of 14 yrs. ... I'm still exhausted.In context ↗ | Moderate |
Adverse events
- Low-dose naltrexone“I tried it 6 yrs ago and thought I was going to die at .10 mgs!” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I used to go dancing every weekend and then be in bed for 5 days, but it was worth it.
In context ↗ - Anxiety & low mood
I used to go dancing every weekend and then be in bed for 5 days, but it was worth it. ... it helped the debilitating depression.
In context ↗ - Breathlessness
I've struggled with shallow breathing for 10 yrs.
In context ↗