Long COVID
Severe → much betterIll 21 months before improving or writing
Long COVID with breathlessness and PEM, barely out of bed, now a lot better
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 21 months
- Last post
- Mar 2023
In their words
- Condition: Long COVID
I’ve been long hauling since June last year
In context ↗ - At worst: Severe
I couldn’t do anything at all and could barely get out of bed.
In context ↗ - Now: Much better
I’m still not 100% but I am a lot better compared to last year.
In context ↗ - Began after: COVID
The first time was the sickest I’d ever been and is what made me Long Haul
In context ↗
Read from 31 of their posts and comments; links to the 20 this page draws on
Summary
Stone 94604 got long COVID in June 2021, with breathlessness, post-exertional malaise, fatigue and costochondritis. At worst they could barely get out of bed. Recovery was very slow: by March 2022 they could do things again, though they still had breathlessness, food intolerances and a hard-beating heart; by June 2022 they were a lot better but not 100%. Pfizer vaccination and a reinfection changed nothing.
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What they tried
Also tried
Their words about each treatment
- Vitamin D · Helped
Vitamin D especially has been helpful for me. ... It’s not a miracle cure, but it does make a difference.
In context ↗ - stimulant (for ADHD) · Helped
It helps me with brain fog for sure, but it’s not gonna help you with fatigue.
In context ↗ - SSRIs · Not said
I’m on SSRIs and those medications can mess up your temperature regulation, I know for me they make me overheat really quickly.
In context ↗ - heating pad / heat pack · Helped
What helps me is putting a warm heating pad/heat pack on my sides
In context ↗ - Pfizer vaccine · No change
It didn’t help me but didn’t make me worse either.
In context ↗ - physical therapy · Not said
As someone who had to deal with brain damage after a brain injury, it IS reversible. Time, physical therapy, rest.
In context ↗ - antihistamines · No change
I don’t have MCAS so antihistamines did nothing for me.
In context ↗ - flu jab · No change
I got my flu jab last winter and felt totally fine personally!
In context ↗ - anti-inflammatory painkillers · Not said
I took some anti-inflammatory painkillers when the pain was particularly bad but that’s about it for treatment.
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 has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| June 2021 | Long COVID began after a COVID infectionThe first time was the sickest I’d ever been and is what made me Long HaulIn context ↗ | Severe |
| 2021 | Could barely get out of bedI couldn’t do anything at all and could barely get out of bedIn context ↗ | Severe |
| August 2021 | Able to walk longer, still bad after strenuous activitynow I can walk as long as I want but I still feel bad if I do anything too strenuousIn context ↗ | Moderate |
| February 2022 | Very slow gains in breathing, walking and alertnessI can breathe a tiny bit better and walk around more, I don’t feel like I’m half asleep all the timeIn context ↗ | Moderate |
| June 2022 | A lot better but still not 100%I’m still not 100% but I am a lot better compared to last year. It’s just very very slow.In context ↗ | Mild |
Adverse events
- Stimulants (unspecified)“if I’m not careful is i push myself too hard without noticing and then I’m laid up for days with LH symptoms” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“those medications can mess up your temperature regulation, I know for me they make me overheat really quickly” In context ↗ Side effects
- COVID vaccination as treatment“I had my second dose two months after my first one and it did give me a pretty gnarly fever for a day” In context ↗ Side effects
- COVID vaccination as treatment“That happened to me as well after my second dose and it went away in a couple weeks’ time.” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogBreathlessnessFlu-like symptomsHair lossHeart symptoms & palpitationsMast cell (MCAS) & allergiesPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
my most persistent symptoms are shortness of breath, PEM, and just fatigue in general
In context ↗ - Brain fog
It helps me with brain fog for sure, but it’s not gonna help you with fatigue.
In context ↗ - Breathlessness
I get out of breath quicker than I should
In context ↗ - Heart symptoms & palpitations
my heart likes to beat really hard for no reason
In context ↗ - Mast cell (MCAS) & allergies
I have weird food intolerances and allergies
In context ↗ - Pain & fibromyalgia
I had it a couple months ago and it sucked, it’s really painful
In context ↗ - Flu-like symptoms
I run a low-grade fever every other day
In context ↗ - Hair loss
It happened to me too when my long haul was really bad and now I’m getting a little better it seems to have slowed.
In context ↗