Five months of worsening ME/CFS symptoms, no improvement
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 6 months
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
https://www.reddit.com/r/cfs/comments/1whx9y7/bounced_between_ophthalmology_and_neurology/
In context ↗ - At worst: Moderate
previously could play 2 hours of badminton, but now exhausted after 15 minutes, accompanied by breathlessness
In context ↗ - Now: No benefit
mặc dù tình trạng của tôi ngày càng xấu đi
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
A Reddit user in r/cfs described five months of progressive illness from April 2026: light sensitivity, then all-day blurred vision, eye pain, right-hand weakness, nausea, unrefreshing sleep, and exhaustion after 15 minutes of activity that once took two hours. MRIs were clear and myasthenia gravis ruled out; ESR and neutrophils were raised, and doctors labelled the symptoms FND and SSD while the person said they were worsening.
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What they tried
Also tried
Their words about each treatment
- Medrol · Worse
Two major blurring episodes noticeably coincided with using Medrol
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 4 months after onset: the story doesn’t say how ill they were before that. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| April 2026 | light sensitivity began**April:** Started showing signs of light sensitivity.In context ↗ | Not stated |
| June 30 | vision began blurring in the afternoons and evenings**June 30:** Vision began blurring in the afternoons/evenings.In context ↗ | Not stated |
| July 19 | vision blurred all day; right-hand weakness from 7 July; stamina drop**July 19:** Vision became blurred all day, and my eyesight feels progressively weaker.In context ↗ | Moderate |
| September 2026 | symptoms progressing, labelled FND/SSDmặc dù tình trạng của tôi ngày càng xấu điIn context ↗ | Moderate |
Adverse events
- Corticosteroid pulses“Two major blurring episodes noticeably coincided with using Medrol” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Light & noise sensitivity
Started showing signs of light sensitivity.
In context ↗ - Muscle weakness
Yếu tay/tay phải (bắt đầu từ ngày 7 tháng 7), ảnh hưởng đến các kỹ năng vận động tinh như chải tóc, dùng đũa, viết và xé bao bì.
In context ↗ - POTS & dysautonomia
Vận động thể chất kéo dài hơn 15 phút sẽ gây run rẩy tay chân, chóng mặt và thị lực xấu đi
In context ↗ - Breathlessness
now exhausted after 15 minutes, accompanied by breathlessness and a hot rising sensation from chest to throat
In context ↗ - Sleep problems
Non-restorative sleep, waking up 2–4 times a night with a heavy body
In context ↗ - Pain & fibromyalgia
Đau hốc mắt (nặng hơn sau khi vận động, dùng màn hình hoặc nhìn nghiêng), bên trái nặng hơn bên phải.
In context ↗ - Hair loss
An episode of autoimmune hair loss
In context ↗