Homebound with ME/CFS early on, now somewhat better
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2 years
- Last post
- Jun 2025
In their words
- Condition: ME/CFS
I have *really* bad Delayed sleep phase disorder, which apparently is common with CFS?
In context ↗ - At worst: Severe
I barely did anything the year and change I first got sick. Just homebound and the occasional doctors visit (even stopped shaving).
In context ↗ - Now: Somewhat better
I improved somewhat almost two years in but 8 years later or so and I still very rarely leave the house.
In context ↗
Read from 7 of their posts and comments; links to the 4 this page draws on
Summary
Flint 15616 fell ill around 2014 and was homebound for the first year or so, barely doing anything. Wisdom tooth removal early on was followed by a remission lasting about a year, then they were almost as ill as before but less sleepy. They improved somewhat nearly two years in, but years later still rarely left home except for doctor visits; melatonin, amitriptyline and trazodone caused stomach or congestion trouble.
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What they tried
What they credit
Also tried
Their words about each treatment
- meditation / zazen · Worse
my zazen usually tends to wear me out and is unusually difficult to do if I'm not sitting during the most optimal period of the day for me
In context ↗ - melatonin · Worse
melatonin does the same thing, most of the time I'll sleep like 3 or 4 hours and then be fake alert then sick until I can sleep again
In context ↗ - antacids · Helped
Gives me stomach issues too so I use antacids with it which only works for the beginning.
In context ↗ - amitriptyline · Worse
I get bad congestion/allergic effects on amitriptyline or trazodone iirc
In context ↗ - wisdom teeth out · Not said
Getting my wisdom teeth out (totally knocked out, I certainly didn't want to deal with that trauma) was one of the first things I did when I got sick
In context ↗ - antibiotics/anti-inflammatory course · Helped
I hit my only long-time remission for about a year ... which I've always wondered was part of the antibiotics/anti-inflammatory course I was on
In context ↗
Approaches: Antibiotics
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 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 |
|---|---|---|---|
| 2014 | fell ill; homebound for the first year and a half, minimal activityJust homebound and the occasional doctors visit (even stopped shaving).In context ↗ | Severe | |
| early in illness | a month or two after wisdom teeth removal, a remission lasting about a yearabout a month or two afterward I hit my only long-time remission for about a yearIn context ↗ | Not stated | Sinus, jaw and tonsil surgery |
| about a year later | remission endedunfortunately I got almost just as bad as the original except less sleepyIn context ↗ | Severe | |
| almost two years in | improved somewhatI improved somewhat almost two years inIn context ↗ | Moderate | |
| 2022-08-04 | still rarely leaves the house except for doctor visits8 years later or so and I still very rarely leave the house.In context ↗ | Moderate |
Adverse events
- Meditation, yoga, breathwork“I find that my zazen usually tends to wear me out and is unusually difficult to do if I'm not sitting during the most optimal period of the day for me” In context ↗ Made symptoms worse
- Melatonin“melatonin does the same thing, most of the time I'll sleep like 3 or 4 hours and then be fake alert then sick until I can sleep again” In context ↗ Insomnia from treatment
- Melatonin“Gives me stomach issues too so I use antacids with it which only works for the beginning” In context ↗ Gut side effects
- Amitriptyline (Elavil), Trazodone (Desyrel)“I get bad congestion/allergic effects on amitriptyline or trazodone iirc” In context ↗ Allergic reaction / anaphylaxis
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I have *really* bad Delayed sleep phase disorder, which apparently is common with CFS?
In context ↗
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