Very severe ME/CFS, unable to sit or stand; fludrocortisone helped, then relapse
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
still got severe ME/CFS
In context ↗ - At worst: Very severe
I was very severe ... I couldnt walk or sit up at all - now I am not limited by my OI
- Now: Relapsed
I was doing so well and crashed HARD and back to severe out of nowhere.
In context ↗
Read from 17 of their posts and comments; links to the 12 this page draws on
Summary
A 33-year-old woman with severe ME/CFS was once very severe, unable to sit or stand, with bradycardia and severe orthostatic intolerance. Her stack of prescriptions — fludrocortisone and ivabradine for orthostatic intolerance, plus gabapentin, amoxicillin, Linzess — let her stand and walk without passing out, though she remained limited. She crashed back to severe and bedbound by late August 2026; supplements and a strict no-added-sugar diet did nothing.
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What they tried
What they credit
Also tried
Their words about each treatment
- Fludrocortisone · Helped a lot
the fludrocortisone basically saved my life (I couldnt walk or sit up at all - now I am not limited by my OI)
In context ↗ - Ivabradine · Helped a lot
Same with the ivabradine. I have severe POTS and would pass out from leaning against a wall for 5 minutes.
In context ↗ - Amoxicillan · Helped a lot
Some of them like the Amoxicillan actually saved my life (I have a permanent infection and it keeps it at bay)
In context ↗ - Gabapentin · Helped a lot
I might have killed myself from the pain at the time if I didnt have gabapentin ... so that feels life changing
In context ↗ - Morphine XR · Helped
They do help a lot when I need them, but they cause a lot of issues for me
In context ↗ - Clonazepam · Helped
Others I found very helpful but no longer need at this time, like the Clonazepam.
In context ↗ - Celexa · No change
Some like the benzo and the antidepressant I dont think are doing anything which is why Im tapering off.
In context ↗ - Linzess · Helped
the Linzess is definitely necessary
In context ↗ - Mini-pill birth control · Helped
My period literally gives me PEM so the birth control stays until I can heal more.
In context ↗ - THC / cannabis · Helped
THC helps some but the sleep is still fragmented with cannabis but its better than nothing!
In context ↗ - Clonidine/guanfacine · Helped
Clonidine/guanfacine really helps because those meds directly reduce adrenaline.
In context ↗ - Breathing exercises/meditation · No change
Breathing exercises/meditation had nothing on those adrenaline spikes for me
In context ↗ - "perfect" diet with no added sugar, gluten, dairy or seed oils · No change
It hasnt helped me get better or my symptoms at all, unfortunately.
In context ↗ - supplements · No change
I went the supplement route and took tons and noticed 0 change
In context ↗ - role play with AI · Helped
It helps maybe 50% when the lonliness strikes.
In context ↗
Approaches: POTS medication · Antibiotics · Benzodiazepines
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. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | onset of ME/CFSWent from 1 before ME/CFS to thisIn context ↗ | Not stated | |
| — | very severe: bradycardia, severe orthostatic intolerance, could not sit up or walkI was very severe ... I couldnt walk or sit up at all | Very severe | |
| 2026-07 | progress since March; able to stand and walk without passing outI can stand and walk now without passing out which is super niceIn context ↗ | Moderate | Fludrocortisone / Florinef |
| 2026-07-12 | crashed really hard out of nowhereI just crashed really hard out of nowhereIn context ↗ | Severe | |
| 2026-08 | crashed hard back to severe out of nowhereI was doing so well and crashed HARD and back to severe out of nowhereIn context ↗ | Severe | |
| 2026-08-27 | still severe and bedboundStill severe and bedbound.In context ↗ | Severe |
Adverse events
- “They do help a lot when I need them, but they cause a lot of issues for me” In context ↗ Side effects
- “I was taking tonssss of supplements at one time once too and I got pill esophagitis!! So I had to stop a ton of them” In context ↗ Other
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
My period literally gives me PEM so the birth control stays until I can heal more.
In context ↗ - POTS & dysautonomia
I have severe POTS and would pass out from leaning against a wall for 5 minutes.
In context ↗ - Sleep problems
my sleep is so light and fragmented no matter what I do
In context ↗ - Pain & fibromyalgia
the pain was so severe
In context ↗ - Gut problems
I stopped being able to 💩 completelty due to 0 gut motility due to this disease so the Linzess is definitely necessary.
In context ↗ - Heart symptoms & palpitations
I had bradycardia. My heart rate was in the low 50s and sometimes the low 40s.
In context ↗ - Anxiety & low mood
I use it to help me through lonliness, depression, anxiety, fear, PEM, anything negative.
In context ↗
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