ME/CFS with pain and POTS, now nearly back to normal after rest and a knee pillow
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 10 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I used to call it CFS.
In context ↗ - At worst: Moderate
quit job and sell house
In context ↗ - Now: Near normal
I'm not sick anymore ... I still have coccyx and lower pain
- Began after: injury or surgery
Cracked my coccyx
In context ↗
Summary
After a decade of CFS-like illness beginning with a cracked coccyx and sciatic nerve injury around 2016, she quit her job and sold her house, and rest healed her POTS by 2020. Late 2023 brought worse Raynaud's, hip and back pain and unmanageable ADHD. A better knee pillow and pillow configurations eased the sciatic pain, and she says she is no longer sick, though coccyx pain remains.
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What they tried
What they credit
Also tried
Their words about each treatment
- rest · Helped
Rest helped **heal the POTS**, eventually.
In context ↗ - knee pillow and other pillow configurations · Helped a lot
The knee pillow over the course of a couple of days removed the hip pain. And the Raynaud's!
In context ↗ - fluids and salts · Helped
Keep fluids and salts up
In context ↗ - real probiotic foods · Helped
use real probiotic foods not supplements to increase gut health
In context ↗ - high quality food, lots of vegetables · Helped
Eat high quality food, lots of vegetables
In context ↗ - paying attention to how I feel and adjusting · Not said
Pay attention to how I feel and adjust accordingly. ... Walk my dog when I feel good.
In context ↗ - knee and shoulder surgery · Worse
**Knee and shoulder surgery** caused major stress to my body.
In context ↗ - CrossFit · Not said
**Very strong heart** from CrossFit continues pushing blood into shut down circulation system leading to
In context ↗
Approaches: POTS medication · Radical rest · Supplements
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 |
|---|---|---|
| ~2016 | cracked coccyx and injured nerves at base of spine, including sciatic nerveCracked my coccyxIn context ↗ | |
| 2020 | rest healed the POTS and she could function again, though never fullyBy 2020 things were stressful and I never really got to 100%, but it seemed workable.In context ↗ | Radical rest |
| — | knee pillow and pillow configurations took pressure off the base of the spine; fatigue, anxiety and ADHD lifted and she stopped waking every two hoursMassive lessening of sciatic painIn context ↗ | |
| 2026-08-20 | says she is no longer sick, with some coccyx and lower pain remainingit's really pretty great to realize that I'm not sick anymore.In context ↗ |
Symptoms mentioned
Their words about their symptoms
- Brain fog
Brain fog, dizziness, green poo, no rest, pain, dysautonomia, pain pain pain.
In context ↗ - POTS & dysautonomia
My POTS was diagnosed and tested at Johns Hopkins Hospital as not caused by nerves.
In context ↗ - Pain & fibromyalgia
I still have coccyx and lower pain
In context ↗ - Neuropathy & tingling
Massive lessening of sciatic pain
In context ↗ - Anxiety & low mood
Massive reduction in anxiety and sympathetic nervous system dysfunction
In context ↗
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