ME/CFS
Moderate → somewhat betterIll 5 years before improving or writing
ME/CFS rating down to 40, now 60-80 after more water and salt and weight lifting
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 5 years
- Last post
- May 2020
In their words
- Condition: ME/CFS
my life with cfs and pots is just beginning
In context ↗ - At worst: Moderate
over the five years before my diagnosis I would say I dipped down to around a 40
In context ↗ - Now: Somewhat better
in the past year that I’ve been diagnosed, I’ve worked myself back up to at least a 60 pretty much daily
In context ↗
Summary
Owl 97321 dated the illness to about 2014, spending five years seeking diagnoses before a POTS diagnosis in 2019, and also has CFS. On a 0-100 CFS rating scale they fell from 90 to around 40, then, after lifestyle changes including more water and salt and weight lifting for painful hypermobile joints, built back to 60 daily and usually 70-80, with flares down to 30.
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What they tried
Their words about each treatment
- more water and salt intake · Helped
I now drink more water a day than ever before and make sure my salt intake is up
In context ↗ - weight lifting · Not said
I’ve started weight lifting to strengthen my joints
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 | After |
|---|---|---|---|
| 2014 | Illness began; rated 90 on a CFS rating scaleI would say I started out at a 90In context ↗ | Near normal | |
| 2019 | Dipped to about 40 over the five years before diagnosisover the five years before my diagnosis I would say I dipped down to around a 40In context ↗ | Moderate | |
| past year (2019-2020) | Worked back up to at least 60 daily after lifestyle changesin the past year that I’ve been diagnosed, I’ve worked myself back up to at least a 60 pretty much dailyIn context ↗ | Mild | Salt, electrolytes and fluids |
| 2020-05-02 | Usually 70-80 on the rating scale, with flare ups down to 30I usually stay between 70-80 but everyone has flare ups and mine can drop me down to 30.In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
before I was finally given a definitive POTS diagnosis last year
In context ↗ - Pain & fibromyalgia
somebody who’s in constant pain from my associated hyper mobility and other symptoms
In context ↗