Long COVID with PEM, brain fog and POTS, now much better with immunity still compromised
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2.5 years
- Last post
- Jun 2024
In their words
- Condition: Long COVID
I've been sick with long covid since January
In context ↗ - At worst: Moderate
We take care of our kids together and struggle to do much else.
In context ↗ - Now: Much better
after 2.5 years my immune system is still shot full of holes, though my other symptoms have mostly faded away
In context ↗ - Began after: COVID
I've been sick with long covid since January
In context ↗
Read from 6 of their posts and comments; links to the 4 this page draws on
Summary
A trans woman who caught COVID again in January 2022 developed long COVID, with PEM, brain fog, POTS and a rising resting heart rate by month 10. Compression sleeves helped her feel secure and she had almost two weeks of better functioning. By January 2024 she had moved for guaranteed care and worked from home but spent most of December in bed; by June 2024 other symptoms had mostly faded, though her immune system was still compromised.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- Compression sleeves · Helped a lot
Compression sleeves have helped me a lot by making my body feel safe.
In context ↗ - checking in with my body · Helped
Thankfully I have learned some warning signs and don't push through heavy limbs or other rough moments anymore!
In context ↗ - fitbit · Not said
I find resting heart rate and heart rate variance during sleep are good indicators of how my day will go
In context ↗ - DBT · Helped
I did an intensive outpatient program of DBT this spring, and it helped me listen to my body without urgency or shame
In context ↗ - personal trainer · Helped
I have had some success with a personal trainer and changing my diet
In context ↗
Approaches: POTS medication · Diet · Exercise and activity · Pacing
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| January 2022 | long COVID after a second COVID infectionI've been sick with long covid since JanuaryIn context ↗ | |
| early October 2022 | almost two weeks of greatly improved functioning with compression sleevesI just enjoyed almost two weeks of greatly improved functioning (around the time I got my sleeves)In context ↗ | Compression garments |
| 2022-10-21 | PEM crash: concentration dropped, movements sluggish, resting heart rate elevatedhalfway through today my concentration tanks. I make it home and my movements are sluggish.In context ↗ | |
| December 2023 | immune system shot; most of December spent in bedmy immune system is shot, and most of December was spent in bedIn context ↗ | |
| 2024-06-17 | other symptoms mostly faded, immune system still compromisedmy other symptoms have mostly faded awayIn context ↗ |
Adverse events
- Everyday exercise and activity“All my doctor had said was "get exercise" 🙃 so now I'm a several PEM episodes in” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still seem to get PEM episodes
In context ↗ - Brain fog
dizziness, brain fog, POTS, PEM, emotional disregulation
In context ↗ - Heart symptoms & palpitations
I check my resting heart rate and yep... it's been elevating for a couple days
In context ↗ - Headaches & migraine
have definitely had more migraines and fibromyalgia problems since transition
In context ↗
Ask Miruvor AI
Similar stories
-
Bedbound spells with long COVID, now much better with pacing and gut treatments
A woman in Spain got long COVID after a COVID infection in October 2024, with bedbound spells, extreme PEM, four safe foods and brain fog. Graded low-intensity exercise and physiotherapy, mast cell and gut treatments and pacing brought her to about 60%…
-
Long COVID: unable to work for months, now somewhat better after antihistamines and LDN
After covid in March 2024, they developed long covid with EBV reactivation, histamine intolerance, dizziness and sensory overload, and could not work for months. Antihistamines with a low-histamine diet helped mood and sleep; LDN helped, and acupuncture…
-
Long COVID at 25% function at worst, now much better after treating migraine and POTS
A bad virus in 2018 led to ME/CFS; Covid in 2020 took them from mild to moderate-severe, and after a booster in early 2022 migraines became daily and at worst they were largely in a dark room at about 25% function. Treating migraine, POTS and MCAS helped; by…
-
Not enough detail to draw a path
Unable to walk for a few weeks with long COVID, now much better after meditation and LDN
Fjord 60658 caught COVID in March 2020 and long COVID began that June, leaving them unable to walk for a few weeks. Improvement came about two years in, after months of disability leave spent meditating in a dark room, and later nortriptyline, LDN and sleep…