ME/CFS
Severe → no benefitNeeds ongoing treatment
Largely bedbound with ME/CFS and severe brain fog, no improvement with symptom meds
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Apr 2026
In their words
- Condition: ME/CFS
personally i interpret these symptoms as interaction between ME and other conditions (for me MCAS, dysautonomia, genetic conditions).
In context ↗ - At worst: Severe
what are some weird things you do while bed bound with orthostatic intolerance?
In context ↗ - Now: No benefit
my mobility has decreased sense and these symptoms caused me a lot of falls
In context ↗
Read from 36 of their posts and comments; links to the 22 this page draws on
Summary
A Reddit user ill with ME/CFS was largely bedbound, with severe brain fog, orthostatic intolerance, air hunger, gastroparesis and MCAS. They managed symptoms with hormone therapy for insomnia, fludrocortisone, metoclopramide, carbamazepine and nerve blocks, and said they would be much worse without fludrocortisone. Psychiatric drugs caused repeated serotonin syndrome, and medications for adrenaline surges led to an emergency visit for suppressed breathing.
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What they tried
Also tried
Fludro· Helped a lotcannabis / CBD· Helpedcarbamazapine· Helpedhormone therapy· Helpedover the counter anti-histamines· Helpedmetoclopramide· Helpedchlorhexidine gluconate 4% solution· Helpedmigraine meds· No changeGET· Worsesleep aids· Worsestimulants· Worseaquatic physical therapy· Worsesupplemental oxygen· Worsepsych meds· Much worsemedication for adrenaline surges· Much worseTCM· Not saidnerve blocks in the trigeminal and occipital nerve· Not saidlow histamine low fodmap· Not saidemergency benzos· Not saidsalt tabs· Not saidLDN· Not saidpacing· Not said
Their words about each treatment
- TCM · Not said
i've suffered less harm from alternative treatments like TCM, cannabis
In context ↗ - cannabis / CBD · Helped
i use cbd for everything
In context ↗ - GET · Worse
than from mainstream treatment courses like GET
In context ↗ - migraine meds · No change
i've had some severe headpain not touched by migraine meds
In context ↗ - nerve blocks in the trigeminal and occipital nerve · Not said
i get regular nerve blocks in the trigeminal and occipital nerve
In context ↗ - carbamazapine · Helped
i've been on carbamazapine. that helped
In context ↗ - hormone therapy · Helped
we ended up using hormone therapy for the insomnia bc all other sleep aids worsened the other symptoms
In context ↗ - sleep aids · Worse
all other sleep aids worsened the other symptoms
In context ↗ - over the counter anti-histamines · Helped
mine prescribes them for me and they can help me sleep
In context ↗ - metoclopramide · Helped
i take metoclopramide and it helps me keep food down
In context ↗ - low histamine low fodmap · Not said
still have to be very careful. stick to low histamine low fodmap
In context ↗ - psych meds · Much worse
they put me on psych meds to help with my apetite and sleep and it causes SS
In context ↗ - emergency benzos · Not said
im trying to taper down and using emergency benzos
In context ↗ - Fludro · Helped a lot
But I still would be much worse without it
In context ↗ - salt tabs · Not said
I keep containers containers of salt tabs in my bed along w sealed water bottles as a work around
In context ↗ - chlorhexidine gluconate 4% solution · Helped
I still get skin infections but it's getting better
In context ↗ - LDN · Not said
when i take my LDN i wait 2 hours before any medicine that impacts the same receptors
In context ↗ - stimulants · Worse
but i know for me it was easier without them. pacing was easier
In context ↗ - pacing · Not said
pacing was easier
In context ↗ - aquatic physical therapy · Worse
a huge trigger for me was trying to do aquatic physical therapy
In context ↗ - medication for adrenaline surges · Much worse
my meds that were supposed to treat adrenaline surges also suppressed my breathing too much
In context ↗ - supplemental oxygen · Worse
somehow supplemental oxygen when i use inpatient affects me like a central nervous system depressant which meant i got bradycardia
In context ↗
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 |
|---|---|---|
| last year | emergency visit after meds suppressed breathinglast year i ended up in emergency bc my meds that were supposed to treat adrenaline surges also suppressed my breathing too muchIn context ↗ | Severe |
| 2026-03-02 | fewer flares and medication reactions after reducing meds and microdosingI have less flares and over reactions to meds. less paradoxical opposite reactionsIn context ↗ | Severe |
| 2026-04-05 | still severely ill, staggering meds and tapering psychiatric drugsive had a lot of problems with poly pharmacy causes worse illness, rolling PEMIn context ↗ | Severe |
Adverse events
- Graded exercise therapy (GET)“honestly i've suffered less harm from alternative treatments like TCM, cannabis, than from mainstream treatment courses like GET.” In context ↗ Made symptoms worse
- “we ended up using hormone therapy for the insomnia bc all other sleep aids worsened the other symptoms.” In context ↗ Made symptoms worse
- “i limit depressants bc they make my breathing worse.” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“when i developed SS i was on 50+mg of mulitple seritonergic drugs.” In context ↗ Side effects
- Oxygen therapy (home oxygen, concentrator)“somehow supplemental oxygen when i use inpatient affects me like a central nervous system depressant which meant i got bradycardia.” In context ↗ Heart rhythm problems
- “last year i ended up in emergency bc my meds that were supposed to treat adrenaline surges also suppressed my breathing too much” In context ↗ ER visit
- Antidepressants (unspecified)“they put me on psych meds to help with my apetite and sleep and it causes SS.” In context ↗ Side effects
- Aquatic therapy / hydrotherapy“a huge trigger for me was trying to do aquatic physical therapy.. the temperture change my body just couldn't handle” In context ↗ Made symptoms worse
- Fludrocortisone / Florinef“Fludro is great but keeping your electrolytes balanced on it and fluid levels up I find difficult.” In context ↗ Side effects
- “ive had a lot of problems with poly pharmacy causes worse illness, rolling PEM.” In context ↗ Made symptoms worse
Symptoms mentioned
BreathlessnessHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
natural fibers helps w my dumps from PEM
In context ↗ - POTS & dysautonomia
my orthostatic intolerance is bad and i dont have a chair
In context ↗ - Mast cell (MCAS) & allergies
for me MCAS, dysautonomia, genetic conditions
In context ↗ - Sleep problems
we ended up using hormone therapy for the insomnia
In context ↗ - Pain & fibromyalgia
Definitely also feel the bone pain from the mattress pillow
In context ↗ - Headaches & migraine
i've had some severe headpain not touched by migraine meds
In context ↗ - Light & noise sensitivity
heavy sensory modulation to minimize light sound noise (overstimulation amplifies emotions)
In context ↗ - Breathlessness
i struggle w breathing anyway and when i sleep its worse
In context ↗ - Heart symptoms & palpitations
i cycle thru a lot of dumps and storms (tachy brachy & temp dysregulation)
In context ↗ - Temperature regulation
i can't regulate my body temp w other materials bc the sweat from the dumps freezes me when it tapers off
In context ↗