Barely able to stay up a few hours with ME/CFS, electrolytes not enough
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- a few years
- Last post
- Feb 2023
In their words
- Condition: ME/CFS
I've been experiencing ME/CFS symptoms for a few years, 18 being where it got a lot worse.
In context ↗ - At worst: Severe
I'm constantly fatigued and find it almost physically impossible to stay up for more than a few hours a day most days. ... How am I supposed to function in everyday adult life when I can barely get out of bed most days?
In context ↗ - Now: No benefit
Electrolytes are seemingly the only things that have worked in any capacity, and I don't see my symptoms being manageable with that alone.
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
Trail 51997, almost 22, had ME/CFS symptoms for a few years, worsening at 18. On SSI, they could barely get out of bed most days and found it almost physically impossible to stay up more than a few hours a day most days; they also had chronic migraines, joint and muscle pain, dizziness, memory trouble, low fever and unrefreshing sleep. Doctors had not diagnosed them, and they planned to ask about ME/CFS. Electrolytes were the only thing that had worked in any capacity, and they did not see their symptoms being manageable with that alone.
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What they tried
Also tried
Their words about each treatment
- Electrolytes · Helped
Electrolytes are seemingly the only things that have worked in any capacity
In context ↗ - medication · Helped
blood cells returned to normal with medication if I remember correctly
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. 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 |
|---|---|---|
| a few years before 2023 | ME/CFS symptoms beganI've been experiencing ME/CFS symptoms for a few yearsIn context ↗ | Not stated |
| age 18 | symptoms got a lot worse18 being where it got a lot worseIn context ↗ | Severe |
| 2023-02-13 | still barely able to get out of bedI can barely get out of bed most daysIn context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Headaches & migraine
chronic migraines (~75% of days)
In context ↗ - Pain & fibromyalgia
joint and muscle pain
In context ↗ - POTS & dysautonomia
dizziness and trouble balancing
In context ↗ - Brain fog
trouble with memory
In context ↗ - Sleep problems
my sleep never seems to relieve me of exhaustion
In context ↗ - Temperature regulation
low fever (I naturally run low at 97.6 anyways)
In context ↗