Mostly bedbound with ME/CFS at worst, now somewhat better with pacing and benfotiamine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jan 2022
In their words
- Condition: ME/CFS
When I first got very ill with ME/CFS (around 20% physical functioning)
In context ↗ - At worst: Severe
Now I'm mostly bedbound, at around 10% functioning, and getting worse.
In context ↗ - Now: Somewhat better
It wasn't a miracle for me by any means, but it means that I can now stand for several minutes without collapsing (as long as I am rested, and always being careful to avoid PEM).
In context ↗
Read from 50 of their posts and comments; links to the 21 this page draws on
Summary
Flint 97597 suspects an SSRI caused or drastically worsened her ME/CFS; her legs began buckling soon after starting it, and she collapsed about a month later. She was mild for a long time before advice to push through left her mostly bedbound at about 10% functioning; a spontaneous week of near-normal health ended in a crash after an outing. Pacing and no-stimulation rest improved her cognition, and high-dose benfotiamine later let her stand for minutes and cook simple meals, though she remained largely housebound.
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What they tried
What they credit
Also tried
Their words about each treatment
- forced walking / pushing through · Much worse
That advice got me from moderate-severe to severe and mostly bedridden very quickly.
In context ↗ - whole oranges · Helped
I've definitely noticed an improvement in my brain fog upon eating whole oranges.
In context ↗ - lavender + hops pillows · Helped
I've found lavender + hops pillows to be very helpful for anxiety and sleep.
In context ↗ - strict physical and mental pacing · Helped
thanks to very strict pacing, I can hold a complex conversation and read complex books again
In context ↗ - no-stimulation rest · Helped a lot
One of my major victories after becoming severe is the very dramatic improvement in my cognitive abilities due to no-stimulation rest.
In context ↗ - daydreaming / visualising · Helped
I reduced significant amounts of physical pain and other PEM symptoms just by daydreaming / visualising instead of worrying.
In context ↗ - Coenzyme Q10 · Helped
It took a couple of months for the Q10 to start working and (at least for me) most of the improvement was in mental clarity and pain relief.
In context ↗ - NADH · Helped
I've found some relief in strict physical and mental pacing, as well as co-enzyme Q10 and NADH supplements.
In context ↗ - quetiapine · Helped
When I take quetiapine (another anti-psychotic) for a day or two, I often find that it temporarily reduces my ME/CFS symptoms and can even stave off a crash. But the side-effects are so bad that it reduces overall functioning if taken continuously.
In context ↗ - antipsychotics · Worse
For me the cognitive effects lessened with pacing, but the physical effects have gotten worse over time.
In context ↗ - benfotiamine · Helped a lot
two days after hitting 600mg benfotiamine, I noticed new muscles growing in my legs because I was able to walk with a much more normal gait
In context ↗ - vitamin D · Helped
I noticed a difference when I started taking vitamin D as well as co-enzyme Q10.
In context ↗ - vitamin B12 · No change
I also take vitamin B12 but don't really notice a difference with it
In context ↗ - CBT and psychotherapy · Worse
So far I've had three and they were all a lot more harmful than helpful.
In context ↗
Approaches: Pacing · Radical rest · Supplements
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 | legs began buckling a month or two before coming down with ME/CFS, believed triggered by an SSRI; mild for a long time while pushing through PEMMy first symptom was my legs buckling under me without warning. It started happening about a month or two before I came down with ME/CFS, and I believe it was triggered by an SSRI.In context ↗ | Mild | |
| — | pushed through on medical and therapeutic advice, going from moderate-severe to severe and mostly bedriddenThat advice got me from moderate-severe to severe and mostly bedridden very quickly. However, I had been mild for a long time before that while pushing through PEM.In context ↗ | Severe | |
| — | sudden spontaneous remission to close to full health for about a weekI went from moderate-severe at the time to suddenly being mild. Close to full health and mobility for about a weekIn context ↗ | Near normal | |
| — | crashed badly after an outing with a friend at the end of the remission weekI overdid it due to the excitement to make up for lost time, and crashed badly at the end of the week after an outing with a friend.In context ↗ | Severe | |
| 2021-04-26 | mostly bedbound and still getting worseNow I'm mostly bedbound, at around 10% functioning, and getting worse.In context ↗ | Severe | |
| 2022-01-22 | benfotiamine allowed standing without collapsing and a more normal gaittwo days after hitting 600mg benfotiamine, I noticed new muscles growing in my legs because I was able to walk with a much more normal gaitIn context ↗ | Severe | Thiamine / benfotiamine |
| 2022-01-26 | still largely housebound but can stand for minutes and cook simple meals; careful to avoid PEMIn practice that means I can now cook very simple meals / snacks without constantly needing to sit down or risk of suddenly collapsing.In context ↗ | Severe | Thiamine / benfotiamine |
Adverse events
- CBT and psychotherapy“So far I've had three and they were all a lot more harmful than helpful.” In context ↗ Made symptoms worse
- Everyday exercise and activity“That advice got me from moderate-severe to severe and mostly bedridden very quickly.” In context ↗ Made symptoms worse
- Radical rest“I tried to just lie in bed without those sitting up periods for a month. It definitely made me worse and it took a few more weeks after that to get back to my baseline.” In context ↗ Made symptoms worse
- Radical rest“It took a while to build up to that level, however, and in the beginning I think it actually worsened my PEM due to the stress and boredom.” In context ↗ Made symptoms worse
- Quetiapine (Seroquel)“But the side-effects are so bad that it reduces overall functioning if taken continuously.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Washing my hair is definitely the worst PEM offender for me
In context ↗ - Brain fog
I've definitely noticed an improvement in my brain fog upon eating whole oranges.
In context ↗ - POTS & dysautonomia
difficulty standing without falling after a few seconds
In context ↗ - Pain & fibromyalgia
The fibromyalgia symptoms improved within a few days (specifically, pain in my hands and feet)
In context ↗ - Sleep problems
lavender + hops pillows to be very helpful for anxiety and sleep
In context ↗ - Muscle weakness
I'm generally very weak at walking
In context ↗ - Light & noise sensitivity
the bright flashing lights, difficulty standing without falling after a few seconds, and all-over muscle pain
In context ↗
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