ME/CFS: remission then housebound and severe again; rest and avoiding exercise helped
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- years
- Last post
- Jul 2019
In their words
- Condition: ME/CFS
I was a rower up to the day I got sick with ME (don't call it CFS).
In context ↗ - At worst: Moderate
My muscles are weak now, but by avoiding exercise and resting a lot I have managed to be able to leave the house a few times a week.
In context ↗ - Now: Relapsed
I had remission in second year and am severe now. *Shrug*
In context ↗
Read from 15 of their posts and comments; links to the 12 this page draws on
Summary
An r/cfs user who had been ill for years reported a remission in their second year of illness, then worsening to housebound and severe. Vitamin D supplements brought very low levels to normal but did not help; they said the ME drugs they tried all made them worse. By avoiding exercise and resting a lot they could leave the house a few times a week.
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What they tried
What they credit
Also tried
Their words about each treatment
- vit D supplement · No change
I don't think vit D supplement made me worse, I deteriorate each year, but it certainly didn't help one bit
In context ↗ - psychotherapy · No change
We all went and tried psychotherapy because we're desperate to get better ... It didn't work
In context ↗ - valgancyclovir · Worse
I've tried many of those drugs all of which made me worse
In context ↗ - gluten free diet · Not said
I was on gluten free for 6 months and didn't lose or gain any weight
In context ↗ - FODMAP · Helped
FODMAP helps, probiotics make it worse
In context ↗ - ibuprofen · No change
I also noticed that ibuprofen doesn't help one bit for ME pain and aches
In context ↗ - resting a lot · Helped
by avoiding exercise and resting a lot I have managed to be able to leave the house a few times a week
In context ↗
Approaches: Pacing
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 |
|---|---|
| — | became ill with MEI was a rower up to the day I got sick with MEIn context ↗ |
| second year of illness | remission in second yearI had remission in second yearIn context ↗ |
| 2018 | deteriorated to housebound and severemy levels are normal now, but my ME has gotten worseIn context ↗ |
| 2019-07-17 | still ill, but leaving the house a few times a week by resting and avoiding exerciseby avoiding exercise and resting a lot I have managed to be able to leave the house a few times a weekIn context ↗ |
Adverse events
- Valcyte / valganciclovir, Rituximab“I've tried many of those drugs all of which made me worse” In context ↗ Made symptoms worse
- Probiotics and fermented foods“FODMAP helps, probiotics make it worse” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Gut problems
I suspect it's got to do something with IBS-D that I have
In context ↗ - Pain & fibromyalgia
ibuprofen doesn't help one bit for ME pain and aches
In context ↗ - Muscle weakness
My muscles are weak now
In context ↗ - Sleep problems
eventually my sleep cycle circles back to night-time
In context ↗ - Post-exertional malaise
an illness that makes you sicker when you exercise
In context ↗ - Heart symptoms & palpitations
I had chest pain 2 or 3 years ago and I'm fine
In context ↗
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