ME/CFS
Severe → no benefitIll for 6 years
Head pressure, dizziness, tired walking from the toilet to the bedroom, nothing helped
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 6 years
- Last post
- May 2025
In their words
- At worst: Severe
I get tired from walking from the toilet to the bedroom.
In context ↗ - Now: No benefit
Nothing ever worked except steroids. Steroids made 100% of my symptoms go away, but I developed side effects so severe, I almost died and I had to stop.
In context ↗
Read from 22 of their posts and comments; links to the 11 this page draws on
Summary
A woman ill since 2019 with constant head pressure, dizziness, burning brain sensations, body pain and flu-like symptoms, who by 2022 got tired walking from the toilet to the bedroom. Dexamethasone cleared all her symptoms but caused Cushing's, adrenal failure and severe mood effects, so she stopped it. Antihistamines gave a slight gain that vanished when she switched drugs, and IVIG made her worse; in May 2025 she reported treatments still hadn't worked.
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What they tried
Also tried
dexamethasone· Helped a lotbenzos· Helpedlots of fluids· Helpedcaffeine· HelpedFamotidine· Helpedcetrizine· Helpedsupplements· No change8 antidepressants (incl. venlafaxine)· No change5 or 6 migraine meds· No changeantibiotics· No changeantivirals· No changeantiinflammatories· No changeHBOT· No changegabapentin· No changelyrica· No changeclaritine· WorseIVIG· Much worsemeds for lyme&co· Not said
Their words about each treatment
- supplements · No change
I take all the supplements, all the meds, and see 0 improvement.
In context ↗ - 8 antidepressants (incl. venlafaxine) · No change
Like.. 8 antidepressants? ... Nothing ever worked except steroids.
In context ↗ - 5 or 6 migraine meds · No change
5 or 6 migraine meds, antibiotics
In context ↗ - antibiotics · No change
antibiotics, combos of them, antivirals
In context ↗ - antivirals · No change
combos of them, antivirals, benzos
In context ↗ - antiinflammatories · No change
antiinflammatories, diets
In context ↗ - dexamethasone · Helped a lot
Steroids made 100% of my symptoms go away, but I developed side effects so severe, I almost died and I had to stop.
In context ↗ - benzos · Helped
The only thing that has helped with the symptoms so far is dexamethasone and sometimes benzos.
In context ↗ - lots of fluids · Helped
Lying down/sleeping and lots of fluids & caffeine help sometimes too, but not always.
In context ↗ - HBOT · No change
hbot yes, no effect
In context ↗ - Famotidine · Helped
I started taking 40mg of Famotidine and 10mg of cetrizine at night
In context ↗ - cetrizine · Helped
i think I started seeing maybe a little bit of improvement on like week 4 or 5
In context ↗ - claritine · Worse
Since then, complete downhill. All the symptoms back.
In context ↗ - meds for lyme&co · Not said
I also take other meds for lyme&co
In context ↗ - IVIG · Much worse
This week I started IVIG and all of my (already horrible for the last 5 years) symptoms have gotten even worse.
In context ↗ - gabapentin · No change
I have sfn, gabapentin didnt help me tho
In context ↗ - lyrica · No change
Neither did lyrica or ivigs.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 3 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|---|
| 2019 | neuro symptoms began and persisted dailyCrazy neuro issues since 2019In context ↗ | Not stated | |
| 2022-07-25 | mostly bad days, exhausted by walking to the bedroomI get tired from walking from the toilet to the bedroom.In context ↗ | Severe | |
| 2022-10 | dexamethasone cleared symptoms but flattened moodSteroids made 100% of my symptoms go away, but I developed side effects so severe, I almost died and I had to stop.In context ↗ | Mild | Corticosteroid pulses |
| 2022-10 | Cushing's and adrenal failure from steroids, hospitalisedmy cortisol level fell to 27 (normal is around 500) so I was admitted for basically my adrenals failingIn context ↗ | Severe | Corticosteroid pulses |
| 2024-08 | slight improvement on cetirizine plus famotidine by week 4-5i think I started seeing maybe a little bit of improvement on like week 4 or 5In context ↗ | Severe | |
| 2024-08 | switched from cetirizine to loratadine, all symptoms returnedSince then, complete downhill. All the symptoms back.In context ↗ | Severe | |
| 2024-09-14 | IVIG made all symptoms worseThis week I started IVIG and all of my (already horrible for the last 5 years) symptoms have gotten even worse.In context ↗ | Severe | IVIG / subcutaneous Ig |
| 2024-10-17 | worst days ever, every symptom at maximumToday and yesterday probably tops my worst day ever.In context ↗ | Severe | |
| 2025-05-21 | still severely ill five years in; mast-cell drugs, gabapentin, Lyrica and IVIG gave nothingCrokolyn, ketotifen, h1, h2, diet, antileukotrienes.. not a single thing worked.In context ↗ | Severe |
Adverse events
- Corticosteroid pulses“not being able to sleep AT ALL” In context ↗ Insomnia from treatment
- Corticosteroid pulses“hot flushes, burning, constant hunger and some overload of energy - which feels fake!” In context ↗ Side effects
- Corticosteroid pulses“im completely apathic. Nothing excites me, nothing makes me happy, laugh” In context ↗ Mood or psychiatric effects
- Corticosteroid pulses“i lost ALL of the libido” In context ↗ Side effects
- Corticosteroid pulses“side effects so severe, I almost died and I had to stop” In context ↗ Side effects
- Corticosteroid pulses“I had severe Cushings. Got a really bad cushing case, hypotension, obesity” In context ↗ Side effects
- Corticosteroid pulses“hypotension” In context ↗ Low blood pressure or fainting
- Corticosteroid pulses“my kidneys stopped working” In context ↗ Liver or kidney problems
- Corticosteroid pulses“insomnia up to a point where I couldnt sleep 5 days” In context ↗ Insomnia from treatment
- Corticosteroid pulses“I was admitted for basically my adrenals failing” In context ↗ Hospitalisation
- Corticosteroid pulses“became depressed, suicidal” In context ↗ Suicidal thoughts or attempt
- Corticosteroid pulses“i lost my period” In context ↗ Side effects
- Corticosteroid pulses“i got so many side effects i had to be taken off” In context ↗ Side effects
- IVIG / subcutaneous Ig“This week I started IVIG and all of my (already horrible for the last 5 years) symptoms have gotten even worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Flu-like symptomsHeadaches & migraineMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaSleep problemsTemperature regulation
Their words about their symptoms
- POTS & dysautonomia
I also have Ehlers-Danlos and POTS
In context ↗ - Mast cell (MCAS) & allergies
Started it because of the CSF, MCAS, craniocervical instability
In context ↗ - Sleep problems
I am trying to fall asleep for 4h now and i cant
In context ↗ - Pain & fibromyalgia
I have extreme body pain, aches in joints, muscles
In context ↗ - Headaches & migraine
headaches (migraines, tension headaches, occipital headaches, ice-pick, cluster, pressure headaches)
In context ↗ - Muscle weakness
I get tired from walking from the toilet to the bedroom.
In context ↗ - Neuropathy & tingling
crawling/numbness sensations
In context ↗ - Flu-like symptoms
It feels like having neverending eternal flu
In context ↗ - Temperature regulation
Feverish feelings, chills, shivers.
In context ↗