Long COVID with pain, PEM and visual snow, somewhat better after three to five months
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 1 year
- Last post
- Jan 2023
In their words
- Condition: Long COVID
the hip bone inflammation was just the beginning of the long Covid journey
In context ↗ - At worst: Severe
I am not functional anymore.
In context ↗ - Now: Somewhat better
After 3 months it got better, but it left me with a bad tinnitus and debilitating visual snow syndrome symptoms.
In context ↗ - Began after: COVID
I had Covid in January, then an unexplainable inflammation of the hip bone in June.
Read from 20 of their posts and comments; links to the 9 this page draws on
Summary
A 36-year-old man developed long COVID after a mild COVID infection in early 2022: energy loss, then months later a transient hip osteoporosis and a severe flare of pre-existing visual snow syndrome with tinnitus, plus numbness, burning pain and PEM. Some symptoms improved after about three to five months, but he was left with vision problems, tinnitus, headaches, dizziness and pain after activity.
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What they tried
What they credit
Also tried
Their words about each treatment
- escitalopram · Worse
I took today for the first time escitalopram, and that is the reason my tinnitus seems to have gotten worse.
In context ↗ - time / spontaneous healing · Helped
After 3 months it got better, but it left me with a bad tinnitus and debilitating visual snow syndrome symptoms.
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 6 months after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| 2022-01 | mild COVID, then energy levels droppedIt was very mild (1 day felt bad, then 2 weeks headaches) ... my energy levels dropped down | Not stated |
| 2022-07 | hip inflammation followed by a neurological flare: burning, numbness, tinnitus, visionmy visual snow syndrome flared up so bad that it literally ruined my life over night ... I am not functional anymoreIn context ↗ | Severe |
| 2022-10 | most symptoms resolved; tinnitus and vision problems remainedAfter 3 months it got better, but it left me with a bad tinnitus and debilitating visual snow syndrome symptoms.In context ↗ | Moderate |
| 2023-01 | left with tinnitus, PEM, visual snow and pain after activityled to the flareup of my tinnitus, PEM, visual snow syndrome. And this is way worse.In context ↗ | Moderate |
Adverse events
- Escitalopram (Lexapro)“I took today for the first time escitalopram, and that is the reason my tinnitus seems to have gotten worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Vision problems
my visual snow syndrome flared up so bad that it literally ruined my life over night
In context ↗ - Tinnitus
left me with a bad tinnitus and debilitating visual snow syndrome symptoms
In context ↗ - Brain fog
inability to focus
In context ↗ - Light & noise sensitivity
bad light sensitivity
In context ↗ - Headaches & migraine
the worst remained (vision affected, tinnitus, headaches/dizziness)
In context ↗ - POTS & dysautonomia
the dysautonomia similar symptoms started approx. 1 month later
In context ↗ - Pain & fibromyalgia
I still have muscle / nerve pain in the whole body
In context ↗ - Post-exertional malaise
led to the flareup of my tinnitus, PEM, visual snow syndrome
In context ↗ - Neuropathy & tingling
the rest got better after 5 months (burning in the whole body, numbness, pins and needles, fatigue, muscle pain, GI, etc.)
In context ↗ - Sleep problems
i could not get any sleep due to pain (burning sensations)
In context ↗ - Gut problems
fatigue, muscle pain, GI, etc.
In context ↗ - Flu-like symptoms
i have muscle pain all over my body and a feeling of being sick
In context ↗
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