Long COVID nerve pain, unable to get out of bed; IVIG helped, then flares returned
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 19 months
- Last post
- Jun 2024
In their words
- Condition: Long COVID
I was diagnosed with long Covid in December of 2022.
In context ↗ - At worst: Severe
I can’t even get out of bed most days.
In context ↗ - Now: Relapsed
at the start of my treatment i noticed some changes but currently i feel horrible.
In context ↗ - Began after: COVID
I was diagnosed with long Covid in December of 2022.
In context ↗
Read from 11 of their posts and comments; links to the 7 this page draws on
Summary
A 19-year-old was diagnosed with long COVID in December 2022 and developed small and large fibre neuropathy with excruciating nerve pain, unable to get out of bed most days. IVIG from January 2023 eased the nerve pain at first, but frequent flares returned and by June 2024 they said their symptoms had barely changed. Pregabalin gave little relief; compression gloves and cannabis helped the pain.
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What they tried
What they credit
Their words about each treatment
- IVIG · Helped
I did see a lot more improvement with my symptoms at the beginning of it. Recently I’ve had a lot of set backs
In context ↗ - pregabalin · No change
pregabalin but i don’t get much relief
In context ↗ - smoking weed · Helped
only smoking weed has helped calm my pain
In context ↗ - compression gloves · Helped
i’ve been using compression gloves which have helped a lot more than i expected ... it doesn’t give full relief but i’ve made it manageable
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 | After |
|---|---|---|---|
| December 2022 | diagnosed with long COVID, nerve damage, in bed most daysI was diagnosed with long Covid in December of 2022. I developed nerve damage and have the worst nerve pain. I can’t even get out of bed most days.In context ↗ | Severe | |
| January 2023 | started IVIG, less nerve pain at firstthe first time i felt a lot less nerve painIn context ↗ | Severe | IVIG / subcutaneous Ig |
| 2023-08-05 | flare up after early improvementi was seeing improvement but i’ve been getting into another flare up this week. i’d say currently i’m 4/10.In context ↗ | Moderate | |
| 2024-06-26 | no change in nerve damage, feels horriblemy symptoms really haven’t changed much ... currently i feel horribleIn context ↗ | Severe |
Adverse events
- IVIG / subcutaneous Ig“they gave me too much in too little of time so I ended up getting really sick” In context ↗ Side effects
- IVIG / subcutaneous Ig“it definitely has taken somewhat of an affect on my mental health. being the youngest person there” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Neuropathy & tingling
I typically feel numbness/burning/tingling/pins and needles sensations in my hands, feet, legs, and arms.
In context ↗ - Anxiety & low mood
it definitely has taken somewhat of an affect on my mental health
In context ↗
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