ME/CFS, POTS and long COVID, in bed for days after exercise, still no improvement
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 1 year
- Last post
- Oct 2023
In their words
- Condition: ME/CFS
Over the last year I have been diagnosed with CFS, POTs, and long covid
In context ↗ - At worst: Moderate
I haven't been able to find a way to be active without causing myself to crash and be in bed for days afterwards.
In context ↗ - Now: No benefit
I feel like I have absolutely no quality of life anymore
In context ↗ - Began after: COVID
diagnosed with CFS, POTs, and long covid
Read from 1 of their posts and comments; links to the one this page draws on
Summary
A previously active person was diagnosed with CFS, POTS and long COVID over the previous year, quit their job and moved in with friends who could help and call an ambulance if they fainted. They could not exercise without crashing and being in bed for days, gained 60 pounds and became extremely depressed. Eating less worsened their POTS and led to only 3 pounds of weight loss. They described having no quality of life anymore.
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What they tried
Also tried
Their words about each treatment
- being active / exercising · Worse
I haven't been able to find a way to be active without causing myself to crash and be in bed for days afterwards
In context ↗ - eating less · Worse
I've tired to eat less, all it did was make my POTs worse and I only lost 3 pounds
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. 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 |
|---|---|---|
| over the last year | Diagnosed with CFS, POTS and long COVID after a previously active lifeOver the last year I have been diagnosed with CFS, POTs, and long covidIn context ↗ | Not stated |
| over the last year | Eating less made POTS worseI've tired to eat less, all it did was make my POTs worse and I only lost 3 pounds.In context ↗ | Moderate |
| 2023-10-21 | Still unable to be active without crashing; quit job, gained 60 pounds and depressedI've had to quit my job and move in with friends who can help me out, and call an ambulance if I hurt myself fainting from the POTs.In context ↗ | Moderate |
Adverse events
- “I've tired to eat less, all it did was make my POTs worse and I only lost 3 pounds.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
fainting from the POTs
In context ↗ - Post-exertional malaise
causing myself to crash and be in bed for days afterwards
In context ↗ - Anxiety & low mood
have gotten extremely depressed
In context ↗