ME/CFS
Severe → no benefit
ME/CFS with PEM and all time on couch; no benefit from one meal a day or blood draws
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Jun 2024
In their words
- Condition: ME/CFS
I have MCAS, ME/CFS and autoimmune disease (still figuring out what exactly)
In context ↗ - At worst: Severe
I've gained weight from temporary steroid use that I can't shed since I spend all my time on the couch
In context ↗ - Now: No benefit
I've gained weight from temporary steroid use that I can't shed since I spend all my time on the couch
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
A 31-year-old woman with ME/CFS, MCAS and an undiagnosed autoimmune condition reported PEM after mental and physical exertion and said she spent all her time on the couch. She had gained weight during temporary steroid use and could not exercise enough to lose it. She felt better eating one big meal a day than three smaller ones, and her fatigue eased for a day or two after monthly blood draws.
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What they tried
Also tried
Their words about each treatment
- temporary steroid use · Not said
I've gained weight from temporary steroid use that I can't shed
In context ↗ - eating fruit instead · No change
I've tried eating fruit instead, but that doesn't satisfy the craving
In context ↗ - one big meal a day · Helped
I have found that I feel better when I eat one big meal a day vs three smaller ones
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | ME/CFS with MCAS and autoimmune disease; PEM after mental and physical exertion; on the couch all dayI have MCAS, ME/CFS and autoimmune diseaseIn context ↗ | Severe | |
| 2024-06-24 | fatigue eased for a day or two after monthly blood drawsI've noticed my fatigue improves for a day or two after.In context ↗ | Severe | |
| 2024-06-30 | felt better eating one big meal a day instead of three smaller onesI have found that I feel better when I eat one big meal a day vs three smaller ones.In context ↗ | Severe | Intermittent fasting |
Adverse events
- Corticosteroid pulses“I've gained weight from temporary steroid use that I can't shed since I spend all my time on the couch.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I experience PEM after mental and physical exertion
In context ↗ - Mast cell (MCAS) & allergies
I have MCAS with food allergies
In context ↗