ME/CFS
Severe → no benefit
80-90% bedbound with ME/CFS, no improvement from a stellate ganglion block
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
When I first gained ME, my crashes were delayed by 3 days.
In context ↗ - At worst: Severe
even as I declined from being mostly housebound to 80-90% bedbound
In context ↗ - Now: No benefit
even as I declined from being mostly housebound to 80-90% bedbound
In context ↗
Read from 14 of their posts and comments; links to the 9 this page draws on
Summary
Orchid 58809 has ME/CFS, with crashes delayed by up to three days and migraines that seem to have worsened the illness. By mid-2024 they had declined from mostly housebound to 80-90% bedbound even as their ME clinic offered only 12 sessions of pacing training. A stellate ganglion block made them more lucid but brought a crash with a resting heart rate of 120, and the 2+ hour drive for another round was too much.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- Workrave · Helped
I use software called 'Workrave' which I've configured to make me take a break every 20 minutes, that helps.
In context ↗ - Sumatriptan · Helped
Sumatriptan helped me, but I ended up rationing them because was getting far more migraines than the monthly dose limit, so only took them for the worst migraines.
In context ↗ - 12 sessions of 'training' on pacing, energy handling, emotional regulation · Not said
My ME clinic, Peterborough, gave me 12 sessions of 'training' on pacing, energy handling, emotional regulation, and then a bye bye, even as I declined from being mostly housebound to 80-90% bedbound
In context ↗ - visible with its heartrate tracker · Helped
I use visible with its heartrate tracker, it's not a magic bullet but I do find it helpful.
In context ↗ - rehydration salt mix · Not said
I have at least one a day, it's worth grabbing one of their bags and drinking some if your sodium is low
In context ↗ - stellate ganglion nerve block · Helped
My wife reported it seemed to help - I was more lucid after treatment than before. But, I had a really, really bad crash afterwards, like resting heartrate 120 bad
In context ↗
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 |
|---|---|
| — | ME onsetWhen I first gained ME, my crashes were delayed by 3 days.In context ↗ |
| 2024-07-09 | declined from mostly housebound to 80-90% bedboundeven as I declined from being mostly housebound to 80-90% bedboundIn context ↗ |
| 2026-03-28 | three-week severe crash after travelling four days for treatmentmy most recent was travel 4 days for treatment, then 3 weeks severe crashIn context ↗ |
| 2026-04-29 | bad crash with resting heart rate 120 after stellate ganglion blockI had a really, really bad crash afterwards, like resting heartrate 120 badIn context ↗ |
| 2026-07-22 | still ill and noise-sensitive from building work next doorNext door have been drilling and hammering for what feels like months.In context ↗ |
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
my most recent was travel 4 days for treatment, then 3 weeks severe crash
In context ↗ - Brain fog
My brain tends to go nuts in loops or thought trains if I don't give it something.
In context ↗ - Headaches & migraine
was getting far more migraines than the monthly dose limit
In context ↗ - Anxiety & low mood
I can kinda use it to calm an anxiety attack in the short term
In context ↗ - Heart symptoms & palpitations
like resting heartrate 120 bad (normal is ~70
In context ↗ - Light & noise sensitivity
I got a pair of bluetooth noise cancelling ear defenders, they help a bit
In context ↗