ME/CFS
Moderate → no benefitIll for 5 years
Housebound with ME/CFS and worsening; pacing and supplements didn't help
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 5 years
- Last post
- Jun 2024
In their words
- Condition: ME/CFS
I’ve had CFS for the past 4 years, give or take.
In context ↗ - At worst: Moderate
Progressed or shall I say regressed from half functional to housebound on the 2.5 ish year.
In context ↗ - Now: No benefit
Have been stuck here for the past year and a half and am getting worse.
In context ↗
Read from 6 of their posts and comments; links to the 4 this page draws on
Summary
Canyon 80325 had CFS for about five years, from roughly 2019, declining from half-functional to housebound about two and a half years in. Pacing and supplements did not help: D-ribose, CoQ10 and PQQ made their PEM worse, SSRIs made them crash, and caffeine or any stimulant worsens symptoms. By mid-2024 they remained homebound and were getting worse.
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What they tried
Also tried
Their words about each treatment
- D-ribose powder · Helped
It kind of worked for a few weeks but now every time I take it I actually paradoxically crash.
In context ↗ - coenzyme Q10 · Worse
The same thing with coenzyme Q10 and PQQ. ... they made my PEM worse.
In context ↗ - SSRIs · Worse
My doctors have prescribed me several SSRIs and big nope. I’ve found that antidepressants cause me to crash as well.
In context ↗ - pacing · Not said
I do the usual pacing and have tried supplements.
In context ↗ - CBT / psychotherapy · Not said
I may tell her that the CBT approach isn’t helping.
In context ↗ - Caffeine · Worse
Caffeine or any stimulant for that matter, makes my symptoms worse. Drinking a cup of joe is an instant sentence to PEM land for me.
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 |
|---|---|---|
| 2019 | onset of CFS, half functionalI’ve had CFS for the past 4 years, give or take.In context ↗ | Mild |
| about 2.5 years into illness (~2022) | regressed from half functional to houseboundProgressed or shall I say regressed from half functional to housebound on the 2.5 ish year.In context ↗ | Moderate |
| 2024-06-05 | still homebound and getting worse; stimulants worsen symptomsCurrent State: Homebound.In context ↗ | Moderate |
Adverse events
- D-ribose“It kind of worked for a few weeks but now every time I take it I actually paradoxically crash.” In context ↗ Made symptoms worse
- CoQ10 / ubiquinol“The disappointing thing is that not only did it not help but they made my PEM worse.” In context ↗ Made symptoms worse
- CoQ10 / ubiquinol, PQQ (pyrroloquinoline quinone)“The same thing with coenzyme Q10 and PQQ. ... not only did it not help but they made my PEM worse.” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“My doctors have prescribed me several SSRIs and big nope. I’ve found that antidepressants cause me to crash as well.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Stopped all these due to CFS PEM.
In context ↗ - Anxiety & low mood
I’ve been seeing a therapist to combat psychological strain I’ve received since my CFS has worsened.
In context ↗