Long COVID with gut problems and crashes, now some improvement while pacing
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 18 months
- Last post
- May 2024
In their words
- Condition: Long COVID
after almost eighteen months of hauling I have started to make decent improvements
In context ↗ - At worst: Moderate
The stress from that and the required energy exertion to look after her caused me to crash back to a much lower baseline. I have been struggling uphill ever since
In context ↗ - Now: Somewhat better
I have been struggling uphill ever since but making decent progress (again) over the last two months
In context ↗ - Began after: COVID
My own theory with long hauler, at least in my case, is I am dealing with some form of constant reinfection due to perpetual exposure to Covid variants while out in public.
Read from 11 of their posts and comments; links to the 8 this page draws on
Summary
Petrel 32783 has had long COVID for about eighteen months, with gut problems, histamine food triggers, heart palpitations and crashes after any return to a normal lifestyle. They were almost three-quarters recovered in summer 2023 when their mother's stage four cancer diagnosis and caring for her crashed them to a much lower baseline. By May 2024 they reported decent progress again, managing four hours of gardening without a crash while still pacing all day.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped
I learned to pace early On. It saved my life probably.
In context ↗ - Pepcid AC · Helped a lot
What helped me immensely in the histamine food triggers was taking both a histamine A and B blockers.
In context ↗ - cetirizine hydrochloride · Helped a lot
This combination has allowed me to eat a decent diet. I have not vomited more than once per week using these meds whereas beforehand I was vomiting multiple times a day
In context ↗ - limiting histamine producing foods and many preservatives · Helped
That regiment along with limiting histamine producing foods and many preservatives has helped me a lot.
In context ↗ - return to jogging · Worse
I wish I hadn’t tried to return to jogging.
In context ↗ - light Pilates · Not said
Even now, I only do light Pilates with no more than two pound weights.
In context ↗ - time · Helped
after almost eighteen months of hauling I have started to make decent improvements. Did four hours of gardening on Sunday. No crash afterward. Time does appear to help.
In context ↗
Approaches: Pacing
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 |
|---|---|---|
| late 2022 | long COVID beganafter almost eighteen months of hauling I have started to make decent improvementsIn context ↗ | Not stated |
| summer 2023 | almost three-quarters recoveredI was almost 3/4 recovered last summer when my mom was diagnosed with cancer.In context ↗ | Mild |
| summer 2023, after his mother's diagnosis | crashed after their mother's cancer diagnosis and caring for herThe stress from that and the required energy exertion to look after her caused me to crash back to a much lower baseline.In context ↗ | Moderate |
| 2024-05-22 | decent improvements again, four hours of gardening without a crashafter almost eighteen months of hauling I have started to make decent improvements. Did four hours of gardening on Sunday. No crash afterward.In context ↗ | Mild |
| 2024-05-27 | decent progress over the last two months but every day a struggleI have been struggling uphill ever since but making decent progress (again) over the last two months. Every day is a struggle for me.In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
If I try to return to normal lifestyle I wind up crashing within days.
In context ↗ - Gut problems
I still have many unresolved symptoms like the Gastrointestinal issues which I can treat maybe minimally with antihistamines.
In context ↗ - Mast cell (MCAS) & allergies
What helped me immensely in the histamine food triggers was taking both a histamine A and B blockers.
In context ↗ - Heart symptoms & palpitations
The anti histamines have also provided me relief against heart palpitations and stomach issues like vomiting.
In context ↗
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