ME/CFS
Severe → no benefitIll for 8 years
ME/CFS with fever and fatigue, housebound and no relief from treatments, now bedbound
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 8 years
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
My CFS story has started in 2017 with the viral infection
In context ↗ - At worst: Severe
a temporary physiotherapist managed to make me bedbound.
In context ↗ - Now: No benefit
2 weeks later I felt fatigue is even worse and that I had never felt that bad.
In context ↗ - Began after: another virus
My CFS story has started in 2017 with the viral infection, which left me with low-grade fever and persistent fatigue until this day.
- Says they never had: Post-exertional malaise
all typical symptoms except for PEM
Summary
Ocean 25879's ME/CFS began in 2017 with a viral infection that left low-grade fever and fatigue. Housebound but working in IT, they got no relief from psychiatric medications, ketamine, rTMS, antivirals, ketotifen or modafinil's fake energy. In mid-2025 an alternative physiotherapist's neck session left them bedbound and unable to read more than a few sentences, facing long sick leave.
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What they tried
Also tried
physiotherapist specialized in neck problems· Helped · wore offpsychotherapy· No changemodafinil· No changeantivirals· No changeKetotifen· No changemedications from psychiatrist· Worseketamine· WorserTMS (TMS)· Worsealternative physiotherapy· Much worse
Their words about each treatment
- psychotherapy · No change
5 years of psychotherapy ... Nothing helped.
In context ↗ - medications from psychiatrist · Worse
I tried almost all possible medications from psychiatrist (including ketamine and TMS), and none of them even virtually lifted this state, but made it worse.
In context ↗ - ketamine · Worse
including ketamine and TMS), and none of them even virtually lifted this state, but made it worse
In context ↗ - modafinil · No change
I used one actual stimulant called modafinil, which gave me a feeling of fake energy. Literally like drinking coffee after not sleeping for 2-3 days and fooling organism with this
In context ↗ - antivirals · No change
treatments up to rTMS, ketamine, antivirals, Ketotifen, EMG test. Nothing helped.
In context ↗ - physiotherapist specialized in neck problems · Helped
I have been visiting PT specialized in neck problems, as surgeon recommended that. I had 1 hour of improvement after one visit, but that's it.
In context ↗ - alternative physiotherapy · Much worse
A month ago I had alternative PT with therapist, who is not advertising as "neck specialist", but got good reviews. ... 2 weeks later I felt fatigue is even worse and that I had never felt that bad.
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2017 | ME/CFS began after a viral infection; housebound from the startMy CFS story has started in 2017 with the viral infection ... I am moderate/housebound since 2017 | Moderate |
| July 2025 | became bedbound after a session with an alternative physiotherapist2 weeks later I felt fatigue is even worse and that I had never felt that bad. I had 2-week sick leave hoping that it is temporary.In context ↗ | Severe |
| 2025-08-05 | bedbound, cannot read more than a few sentences, facing sick leaveNow I cannot read more than a few sentences without struggle, analyze any scripts at job, listen to conversationsIn context ↗ | Severe |
Adverse events
- Ketamine“I tried almost all possible medications from psychiatrist (including ketamine and TMS), and none of them even virtually lifted this state, but made it worse.” In context ↗ Made symptoms worse
- rTMS (transcranial magnetic stimulation)“I tried almost all possible medications from psychiatrist (including ketamine and TMS), and none of them even virtually lifted this state, but made it worse.” In context ↗ Made symptoms worse
- Modafinil / armodafinil“I used one actual stimulant called modafinil, which gave me a feeling of fake energy. Literally like drinking coffee after not sleeping for 2-3 days and fooling organism with this” In context ↗ Side effects
- “a temporary physiotherapist managed to make me bedbound.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Brain fog
I cannot read more than a few sentences without struggle, analyze any scripts at job
In context ↗ - Flu-like symptoms
left me with low-grade fever and persistent fatigue until this day
In context ↗ - Anxiety & low mood
I also suffer from anhedonia and emotional bluntness
In context ↗ - Gut problems
extreme nausea in back of my throat(??; with hyperactive gag reflex, weird symptom, I know)
In context ↗