Severe ME/CFS with paralysis, somewhat better after moving and removing stressors
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Apr 2022
In their words
- Condition: ME/CFS
the flair ups still make it difficult from time to time
In context ↗ - At worst: Severe
I had paralysis on my right side and could hardly walk or see
In context ↗ - Now: Somewhat better
also noticed that my symptoms greatly subsided ... the flair ups still make it difficult from time to time
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
Crest 46059 had severe ME/CFS with right-sided paralysis, hardly able to walk or see, neuropathy, rashes, hair loss and lost days, which doctors dismissed. Moving from an eastern state to the west reduced symptom severity over several months, and later removing stressors brought a noticeable improvement. Flares still made things difficult at times; vitamin B, water and multivitamins also helped.
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What they tried
What they credit
Also tried
Their words about each treatment
- moved from an eastern state to the west · Helped
I moved from an eastern state to the west and also noticed that my symptoms greatly subsided.
In context ↗ - Vit B · Helped
Vit B and electrolytes helped for me.
In context ↗ - Spiro · Helped
I'm taking Spiro, which moderately helps the backflow and keeps the murmurs from getting too uncomfortable
In context ↗ - keeping active · Helped
but keeping active really is the best relief for it. Gets the circulation going and pulls the fluid from swell points
In context ↗ - Remove or distance myself from all stressors · Helped
Remove or distance myself from all stressors as much as possible. ... but it helped with recharging enough to make a noticeable difference.
In context ↗ - Water · Helped
Water, water, water, water, water.
In context ↗ - multivitamins · Helped
And multivitamins.... Every single day.
In context ↗
Approaches: Mould avoidance
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 of ME/CFS: right-sided paralysis, could hardly walk or see, neuropathy, unconscious at night, ER visitsI had paralysis on my right side and could hardly walk or seeIn context ↗ | Severe | |
| 2019-02-16 | moved from a Midwestern/eastern state to the west; symptoms greatly subsided over several monthsmy symptoms greatly subsided ... it definitely reduced in severity over the course of several monthsIn context ↗ | Mild | Relocation and environmental change |
| 2022-04-25 | distanced from stressors and drank water with multivitamins daily; recharged noticeably, flares still difficult at timesit helped with recharging enough to make a noticeable differenceIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Neuropathy & tingling
it felt like ants were crawling all over me day and night which was the sign of neuropathy
In context ↗ - Muscle weakness
my facial muscles began to atrophy (visibly)
In context ↗ - Vision problems
I had paralysis on my right side and could hardly walk or see
In context ↗ - Brain fog
I was a zombie on days I couldn't remember
In context ↗ - Heart symptoms & palpitations
I was in and out of the ER for what felt like heart attacks
In context ↗
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