ME/CFS
Moderate → no benefitIll for 1 yearNeeds ongoing treatment
ME/CFS with PEM and thick brain fog, no improvement; steroids only eased PEM
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 1 year
- Last post
- Nov 2020
In their words
- Condition: ME/CFS
The last visit to my endocrinologist was when he mentioned me/cfs
In context ↗ - At worst: Moderate
Grocery shopping by myself requires me to take cold-hold bags because I need to sit in the car for about 30 minutes to gather my brain and energy to drive home.
In context ↗ - Now: No benefit
taking a trip to the grocery store takes 2 hours and even with a list, I get so overwhelmed, the brain fog is thick
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Cedar 29093, in Texas, had complained of ME/CFS symptoms for about a year when her endocrinologist raised the diagnosis in October 2020; she also had two autoimmune conditions. She called PEM and thick brain fog her worst symptoms and said mental and emotional effort hit her harder than physical effort. A family waterpark trip left her crashed the next day. She was looking for a doctor familiar with ME/CFS, and said her steroid medication only made PEM less severe and shorter.
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What they tried
Also tried
steroid med· Helpedheart meds· Helped
Their words about each treatment
- steroid med · Helped
the dose of steroids that I'm on for my AI condition should alleviate the PEM. It really only makes it feel less worse and a shorter duration
In context ↗ - heart meds · Helped
The only one that I don't have major issues with is the orthostatic hypotension, and that's because my heart meds help with that.
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| 2019 | ME/CFS symptoms began about a year before the first postmy Endo confirmed that I have been complaining about all of them for the last year or soIn context ↗ |
| 2020 | crashed the day after a family trip to a waterparkI crashed the next day, but it was so worth it.In context ↗ |
| 2020-11-13 | still limited; mental and emotional effort worse than physicalMental and emotional are WAY worse than physical.In context ↗ |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
PEM is actually the worst symptom that I've been complaining about to my Endo
In context ↗ - Brain fog
It's a toss-up between the PEM and the brain fog as to which is there most annoying symptom.
In context ↗ - POTS & dysautonomia
The only one that I don't have major issues with is the orthostatic hypotension, and that's because my heart meds help with that.
In context ↗ - Muscle weakness
the chemical dump turns my muscles into jello
In context ↗