ME/CFS
Moderate → no benefitIll for 3 years
ME/CFS fluctuating mild to moderate for nearly three years, no overall improvement
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 3 years
- Last post
- Jan 2024
In their words
- Condition: ME/CFS
I've had diagnosed ME/CFS for nearly 3 years
In context ↗ - At worst: Moderate
I seem to bounce between mild to moderate, though most of the time is on the more mild side
In context ↗ - Now: No benefit
I've been mild to moderate for about 3 years now ... None of these have cured me
In context ↗ - Began after: another virus
I suspect from something viral, potentially covid but I really don't know
Summary
The Reddit user had had diagnosed ME/CFS for nearly three years, suspected to follow a viral illness, and bounced between mild and moderate, with mild feeling like about 30% of their previous capacity. They seemed to spend more time mild since getting better at pacing, cut out caffeine and limited alcohol and sugar, and found Metamucil the best thing for their IBS. Sleep medications helped little and an antidepressant was awful.
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What they tried
Also tried
probiotics· HelpedMetamucil· Helpedpacing· HelpedCut out caffeine, limit alcohol and sugar· HelpedCut out caffeine, limit alcohol and sugar· HelpedCut out caffeine, limit alcohol and sugar· HelpedStretching· Helpeddifferent sleep meds· No changean anti depressant· WorseCaffeine and coffee· WorsePPI· Not saidvit D· Not saidomega 3· Not said
Their words about each treatment
- different sleep meds · No change
I've tried a couple of things that doctors/nurse practitioners have wanted me to try, all to very little effect (mostly different sleep meds
In context ↗ - an anti depressant · Worse
an anti depressant which was awful
In context ↗ - PPI · Not said
I'm on relatively few meds at the moment, just a PPI for acid reflux
In context ↗ - vit D · Not said
some supplements (vit D, probiotics, metamusil, omega 3 for cholesterol levels)
In context ↗ - omega 3 · Not said
omega 3 for cholesterol levels
In context ↗ - probiotics · Helped
I also often have probiotics but I found metamucil to have a much greater impact
In context ↗ - Metamucil · Helped
Metamucil - has probably been the best thing for IBS I've ever tried
In context ↗ - pacing · Helped
especially since I seem to have gotten better at pacing (though still far from perfect)
In context ↗ - Cut out caffeine, limit alcohol and sugar · Helped
Cut out caffeine, limit alcohol and sugar - caffeine didn't help my energy and instead made me crash badly
In context ↗ - Stretching · Helped
Stretching (especially the legs and neck/shoulders) - I often am sitting/reclining and this helps loosen things up
In context ↗ - Caffeine and coffee · Worse
caffeine didn't help my energy and instead made me crash badly
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | ME/CFS onset, suspected viral, bouncing mild to moderateI've had diagnosed ME/CFS for nearly 3 years, I suspect from something viralIn context ↗ | Moderate | |
| 2023-12-13 | improved after getting better at pacingI seem to have gotten better at pacing (though still far from perfect)In context ↗ | Mild | Pacing and the energy envelope |
| 2024-01-25 | mild to moderate, about 30% of previous capacity; Metamucil helps IBSfunny how mild still feels like 30% of my previous capacityIn context ↗ | Mild |
Adverse events
- Antidepressants (unspecified)“mostly different sleep meds, and an anti depressant which was awful” In context ↗ Side effects
- Caffeine and coffee“caffeine didn't help my energy and instead made me crash badly” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Gut problems
Metamucil - has probably been the best thing for IBS I've ever tried
In context ↗