Unable to work, relearning to walk with ME/CFS; much better with pacing and Abilify
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2024
In their words
- Condition: ME/CFS
I've had MECFS since I was 12ish.
In context ↗ - At worst: Severe
I had to quit and basically had to spend a few years relearning to walk and manage my life with my new condition.
In context ↗ - Now: Much better
actually get to a point where I could go back to work
In context ↗
Read from 9 of their posts and comments; links to the 7 this page draws on
Summary
Lynx 74916 had ME/CFS from about age 12 and kept working until they could no longer, then quit and spent a few years relearning to walk. Years of pacing and being unemployed let them manage their baseline and return to work. By late 2024 they were pacing, taking a POTS medication that has helped for years and low-dose Abilify (2 mg), and relapsing only after long stretches of overdoing it.
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What they tried
What they credit
Also tried
Their words about each treatment
- stimulants · Helped
For me only stimulants work.
In context ↗ - high protein diet · Helped
A high protein diet does help a bit too. ... I also find I do best on a diabetic diet where protein is focused on with low carb.
- fairlife meal replacements · Helped
They are also slightly thick which I find help since I have problems with swallowing.
In context ↗ - metoprolol · Helped
I'm on it and have been for years. It's one of the few things that helps my pots.
In context ↗ - abilify · Helped
They help me a bit, but not that much. ... I found out it helped a lot of my symptoms to some degree.
- blood thinners · Not said
I also am on blood thinners due to clots that I've had.
In context ↗ - pacing · Helped
That being said I have been pacing for the better part of 10 years?
In context ↗
Approaches: Diet · Other drugs and medicines · Stimulants
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 | After |
|---|---|---|---|
| age 12ish | ME/CFS beganI've had MECFS since I was 12ish.In context ↗ | Not stated | |
| — | kept working until unable, quit, relearning to walkThen I had to quit and basically had to spend a few years relearning to walk and manage my life with my new condition.In context ↗ | Severe | |
| — | years of pacing and unemployment, managed baseline and returned to workIt took me years of being unemployed to be able to really manage my baseline and actually get to a point where I could go back to work.In context ↗ | Mild | Pacing and the energy envelope |
| 2024-10-01 | still pacing, back at work, relapses only after long overdoingThat being said I have been pacing for the better part of 10 years?In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
if I do spend a good period of time like say 2 months overdoing it and not getting enough rest and not treating my body well I will absolutely relapse
In context ↗ - Brain fog
For me only stimulants work.
In context ↗ - POTS & dysautonomia
It's one of the few things that helps my pots.
In context ↗ - Anxiety & low mood
I have really bad on and off depression
In context ↗
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