ME/CFS
Mild → no benefitIll for 3.5 years
Severely limited by ME/CFS fatigue and pain, still no improvement
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 3.5 years
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
when I had had my CFS (related to immune dysfunction) for a year
In context ↗ - At worst: Mild
work at NASA ... extreme fatigue
In context ↗ - Now: No benefit
I still have arm numbness and chronic fatigue.
In context ↗ - Began after: a vaccination
I got long covid symptoms from the vax and have never had covid.
Read from 7 of their posts and comments; links to the 6 this page draws on
Summary
Cedar 46567 fell ill in September 2021, right after a first COVID vaccine dose, with burning arm nerve pain and then extreme fatigue and muscle, nerve, bone and joint pain; two years on, life was severely limited. She has arm numbness, chest pain and wheezing and works at NASA. Prednisone resolved her fatigue but she took it for four months; a treatment eased some inflammation but she still had arm numbness and chronic fatigue, and hydroxychloroquine was stopped when her uveitis worsened.
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What they tried
Also tried
Their words about each treatment
- levalbuterol inhaler · Helped
The only thing that helps is 2-3 puffs of my inhaler when the onset of wheezing starts.
In context ↗ - prednisone · Helped a lot
I took prednisone for 4 months and it’s the only thing that resolved my fatigue
In context ↗ - LDN (low dose naltrexone) · Helped
It definitely helped with some inflammation for me, but I still have arm numbness and chronic fatigue. I’m on 10 mg.
In context ↗ - hydroxychloroquine · Worse
I just started hydroxychloroquine but I’ve noticed my uveitis got worse so I stopped taking it
In context ↗ - COVID vaccination as treatment · Not said
Right after my first vaccine on 9/2021 I experienced burning nerve pain on the fingers in my right hand that moved up my arm throughout the day and eventually spread to my other arm
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. 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 |
|---|---|---|---|
| 9/2021 | burning nerve pain up the arms, then weeks later extreme fatigue and widespread pain after first vaccine doseRight after my first vaccine on 9/2021 I experienced burning nerve pain on the fingers in my right handIn context ↗ | Mild | |
| 2023-09-13 | two years in, described a severely limited life2 years later, I am still living a severely limited life.In context ↗ | Mild | |
| — | four months of prednisone resolved her fatigue, but she stopped it over side effectsI took prednisone for 4 months and it’s the only thing that resolved my fatigueIn context ↗ | Not stated | Corticosteroid pulses |
| 2024-12-08 | low-dose naltrexone eased some inflammation but numbness and fatigue remainedIt definitely helped with some inflammation for me, but I still have arm numbness and chronic fatigue.In context ↗ | Mild | Low-dose naltrexone |
| 2025-01-21 | stopped hydroxychloroquine after her uveitis worsened and was waiting to try something elseI just started hydroxychloroquine but I’ve noticed my uveitis got worse so I stopped taking itIn context ↗ | Mild |
Adverse events
- COVID vaccination as treatment“Right after my first vaccine on 9/2021 I experienced burning nerve pain on the fingers in my right hand that moved up my arm throughout the day and eventually spread to my other arm” In context ↗ Nerve pain
- COVID vaccination as treatment“I also had severe chest cramping and ovary/appendix area cramping, I almost went to the ER because it was painful.” In context ↗ Side effects
- COVID vaccination as treatment“a few weeks later I started getting extreme fatigue, muscle, nerve, bone, and joint pain I’ve never felt in my life that wasn’t going away” In context ↗ Other
- Hydroxychloroquine / Plaquenil“I just started hydroxychloroquine but I’ve noticed my uveitis got worse so I stopped taking it” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Neuropathy & tingling
burning nerve pain on the fingers in my right hand that moved up my arm throughout the day
In context ↗ - Muscle weakness
arms are still weak and heavy
In context ↗ - Pain & fibromyalgia
I started getting extreme fatigue, muscle, nerve, bone, and joint pain I’ve never felt in my life
In context ↗ - Heart symptoms & palpitations
The bone/joint pain, and chest pain comes and goes.
In context ↗ - Breathlessness
I need an inhaler (levalbuterol) daily because I am wheezing and coughing a lot
In context ↗