ME/CFS
Severe → no benefitIll for 5.5 years
Moderate-severe ME/CFS with pain and screen intolerance, no benefit from IVIG or blocks
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 5.5 years
- Last post
- Mar 2026
In their words
- Condition: ME/CFS
I have almost all the symptoms of mod severe to severe ME/CFS.
In context ↗ - At worst: Severe
I have almost all the symptoms of mod severe to severe ME/CFS.
In context ↗ - Now: No benefit
My overall condition feels like it is progressively worsening and moving toward severe.
In context ↗ - Began after: COVID
Stress and multiple possible COVID infections and pushing myself far.
Summary
Dusk 48411 fell ill in 2020-21, aged about 15, after stress and possible COVID infections. By early 2026 they had almost all the symptoms of moderate-severe to severe ME/CFS: flu-like feeling, burning muscles, neuropathic pain, migraines and screen intolerance. Two IVIG infusions brought no clear improvement; four stellate ganglion blocks helped little and left them temporarily weaker. They called their condition progressively worsening.
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What they tried
Their words about each treatment
- Ketamine · No change
Ketamine did no shit to me.
In context ↗ - LDN · No change
LDN , I'm non responsive to.
In context ↗ - IVIG · No change
Currently have received two IVIG infusions (no clear improvement so far)
In context ↗ - stellate ganglion blocks · Worse
Had four stellate ganglion blocks between IVIG treatments — unfortunately they did not help much and seemed to make me weaker afterward even if temporarily.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were |
|---|---|---|
| 2020-21 | fell ill after stress and possible COVID infectionsI got sick in 2020-21.In context ↗ | Not stated |
| before March 2026 | weaker after stellate ganglion blocksthey did not help much and seemed to make me weaker afterward even if temporarilyIn context ↗ | Not stated |
| 2026-03-07 | progressively worsening toward severe ME/CFSMy overall condition feels like it is progressively worsening and moving toward severe.In context ↗ | Severe |
Adverse events
- Stellate ganglion block“Had four stellate ganglion blocks between IVIG treatments — unfortunately they did not help much and seemed to make me weaker afterward even if temporarily.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Flu-like symptoms
Persistent flu-like / feverish feeling all the time
In context ↗ - Post-exertional malaise
Post-exertional worsening: even small exertion makes my breathing feel hot
In context ↗ - Pain & fibromyalgia
widespread body pain that can become excruciating
In context ↗ - Neuropathy & tingling
burning and stabbing pain in limbs (especially hands and legs)
In context ↗ - Headaches & migraine
I also suffer from terrible migraines and headaches
In context ↗ - POTS & dysautonomia
I have POTS like symptoms and OH.
In context ↗ - Light & noise sensitivity
I also have severe screen intolerance and sensory intolerance.
In context ↗ - Muscle weakness
Severe eye fatigue — eyelids feel extremely weak and heavy even after rest
In context ↗ - Gut problems
intense nausea and dizziness
In context ↗ - Temperature regulation
chills and a strong feverish feeling despite normal temperature
In context ↗ - Heart symptoms & palpitations
Chest tightness
In context ↗ - Anxiety & low mood
My life is finished.
In context ↗