Long COVID
Severe → no benefitNeeds ongoing treatment
Long COVID, sometimes mostly bedbound, whole-day showers, no benefit from B12 injections
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- May 2026
In their words
- At worst: Severe
durring the times that I am mostly bed bound
In context ↗ - Now: No benefit
This is still a big thing that I deal with.
In context ↗
Summary
Orchid 12939 has long COVID that wiped out the ADHD management—medication and tools—that had helped them before; showers are a major issue and they set aside a whole day for one and are sometimes mostly bed bound. Shower wipes, a shower chair and the right nozzle help, while famotidine for heartburn was stopped when B12 came back low, evening Benadryl addresses hives and skin symptoms, and B12 injections only marginally raised low levels.
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What they tried
Also tried
Benadryl· Helpedshower chair and shower nozzle· Helpedsetting aside an entire day for a shower· HelpedB12 injections· No changefamotodine· Not said
Their words about each treatment
- famotodine · Not said
I was taking famotodine 20mg (which I believe is an H1 or H2 blocker) regularly for heartburn.
In context ↗ - B12 injections · No change
I was prescribed weekly and then monthly B12 injections but my levels only came up marginally.
In context ↗ - Benadryl · Helped
I also regularly take Benadryl in the evenings and have found that it addressed some pretty wretched skin symptoms I was having.
In context ↗ - shower chair and shower nozzle · Helped
A shower chair and the right shower nozzle were game changers for me.
In context ↗ - setting aside an entire day for a shower · Helped
At my level of functioning I have to essentially set aside an entire day for a shower.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | periods of being mostly bed bounddurring the times that I am mostly bed boundIn context ↗ | Severe |
| 2026-05 | still needs a whole day set aside to showerThis is still a big thing that I deal with.In context ↗ | Severe |
Symptoms mentioned
Brain fogGut problemsLight & noise sensitivityMast cell (MCAS) & allergiesPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
can sometimes wipe me out not just for that day but the next(or the next three)
In context ↗ - Brain fog
remembering all the steps, coordinating my movements
In context ↗ - Pain & fibromyalgia
When the physical pain, sensory overwhelm or shame flooding begins
In context ↗ - Mast cell (MCAS) & allergies
When I don’t take it I get regular hives and rashes.
In context ↗ - Gut problems
I was taking famotodine 20mg (which I believe is an H1 or H2 blocker) regularly for heartburn.
In context ↗