Constant eye pain and all-day exhaustion with long COVID, no improvement
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill for
- 1 year
- Last post
- Apr 2023
In their words
- Condition: Long COVID
Still trying to figure out if long Covid is the culprit of this, or if I’m just really unlucky.
In context ↗ - At worst: Moderate
This took my entire life from me.
In context ↗ - Now: No benefit
It’s been 6 months and I’ve thrown every top of the line treatment at this, and my eyes still burn all day.
In context ↗ - Began after: COVID
I had my third bout of Covid in May ‘22
Summary
Crocus 55387, 34, had a third Covid bout in May 2022 and later developed symptoms she wonders may be long COVID. That July she had two months of severe sleep anxiety and insomnia, which she links to Ativan tolerance and which was eased by raising the dose. In October her eyes began burning constantly; she was diagnosed with corneal neuropathic pain, ocular rosacea and new allergies. Six months later she was still in constant eye pain and exhausted all day.
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What they tried
Also tried
Their words about each treatment
- Ativan · Helped
they just increased my dosage ... which did help me finally sleep
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 2 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 | After |
|---|---|---|---|
| May 2022 | third bout of Covid with double ear infection and ruptured eardrumI had my third bout of Covid in May ‘22, and it was accompanied by a double ear infection & a ruptured ear drumIn context ↗ | Not stated | |
| July 2022 | two months of terror of sleep and severe insomnia, going 48+ hours without sleepuntil July when I was hit with the worst sleep related anxiety/insomnia I’d ever experienced ... was going 48+ hours without sleepIn context ↗ | Moderate | |
| October 2022 | sleep brought under control after her Ativan dose was raisedI was able to get the sleep under control by OctoberIn context ↗ | Moderate | Lorazepam (Ativan) |
| October 2022 | eyes began burning nonstop overnight; later diagnosed with corneal neuropathic pain and ocular rosaceaMy eyes started burning nonstop in October. Literally, overnight.In context ↗ | Moderate | |
| April 2023 | still constant burning eye pain and exhausted all day; awaiting a sleep apnea testI sleep 9 hours a night, but am exhausted 24/7.In context ↗ | Moderate |
Adverse events
- Lorazepam (Ativan)“I later learned this was likely due to my tolerance to Ativan ... worst sleep related anxiety/insomnia ... couldn’t sleep despite Ativan, was going 48+ hours without sleep” In context ↗ Insomnia from treatment
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I had this HORRIBLE episode of insomnia where I was so anxious that I could not sleep
In context ↗ - Pain & fibromyalgia
widespread chronic pain (suspected fibromyalgia)
In context ↗ - Mast cell (MCAS) & allergies
32 out of 40 tested environmental allergens
In context ↗ - Vision problems
my eyes still burn all day
In context ↗