ME/CFS
Severe → no benefit
Bedbound nearly two weeks in a first ME/CFS crash, nothing helped yet
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Jul 2023
In their words
- Condition: ME/CFS
it was ME/CFS (v injured)
In context ↗ - At worst: Severe
I've been bed bound for almost 2 weeks now. It is hell.
In context ↗ - Now: No benefit
Nothing is really working yet tbh...
In context ↗ - Says they never had: Sleep problems
do not experience any insomia
Read from 2 of their posts and comments; links to the one this page draws on
Summary
Ill for a while before realising it was ME/CFS, they began trying treatments in mid-2023. By early July they had been bedbound nearly two weeks in a first crash, on sick leave. They started low-dose naltrexone at 1.5 mg then 0.75 mg, used nicotine patches for seven days, and took cetirizine, famotidine and aspirin; a vitamin protocol for high-dose B1 was stopped because of post-exertional malaise. Nothing had helped yet.
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What they tried
Also tried
Their words about each treatment
- LDN · No change
I started on LDN on Wednesday. First at 1.5mg but started today at 0.75 bc of conversations with others.
In context ↗ - nicotine patch · No change
Done 7 days of nicotine patch at 3.5mg and 1.75mg.
In context ↗ - sport watch · Not said
Bought a sport watch last Tuesday to help watch my heart rate and track my HRV for pacing.
In context ↗ - pacing · Not said
PACING IS SO HARD FOR ME!
In context ↗ - vitamin protocol · Not said
Tried a vitamin protocol to prep my body for high dose B1 but I had to stop because my PEM is too much atm.
In context ↗ - rest (sick leave) · Helped
I guess the rest (I'm on sick leave) is kinda working.
In context ↗ - famotidin · Not said
Started today on 10mg famotidin and 500mg aspirin.
In context ↗ - cetirizin · No change
Been taking cetirizin 10mg for around 9 days.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 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 |
|---|---|---|
| — | ill for a while before realising it was ME/CFSI've been sick a while but only recently realised something was really wrong with me and it was ME/CFSIn context ↗ | Not stated |
| late June 2023 | first crash, bedboundI'm in the middle of a crash. I'm bed bound. ... I've been bed bound for almost 2 weeks now. It is hell.In context ↗ | Severe |
| 2023-07-03 | still in a crash, nothing working yetNothing is really working yet tbh... I guess the rest (I'm on sick leave) is kinda working.In context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
my PEM is too much atm
In context ↗