ME/CFS fatigue and POTS, somewhat better on fludrocortisone and antivirals
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- Not stated
- Last post
- Jul 2023
In their words
- Condition: ME/CFS
For the most part fatigue and exertion intolerance have to be managed with pacing and lifestyle changes.
In context ↗ - Now: Somewhat better
Getting my POTS and sleep issues sorted really has improved my quality of life. I still struggle with significant fatigue but am able to work part time now.
In context ↗
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
A Reddit user in British Columbia described POTS and sleep problems alongside significant fatigue. Low-dose naltrexone, taken for a few years, gave uncertain benefit; fludrocortisone helped quite a bit and a few rounds of valacyclovir or acyclovir raised their baseline a little. Two stellate ganglion blocks in February 2023 gave no clear immediate benefit. By July 2023 they still had significant fatigue but worked part time.
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What they tried
Also tried
Their words about each treatment
- recumbent exercise bike · Helped
Gentle exercise (balanced with pacing and meds) helps keep my POTS from getting worse, but I do have to be careful not to over-exert myself.
In context ↗ - pacing · Helped
fatigue and exertion intolerance have to be managed with pacing and lifestyle changes
In context ↗ - stimulants such as meds for ADHD or narcolepsy, caffeine or nicotine · Not said
Some people, myself included at times, use stimulants such as meds for ADHD or narcolepsy, caffeine or nicotine
In context ↗ - EMDR · Helped
EMDR worked well for me and I didn't find it too emotionally or physically draining.
In context ↗ - Stellate ganglion blocks · No change
I can't say I noticed anything immediate or ground breaking in terms of symptom improvement
In context ↗ - Fludrocortisone · Helped
the Fludrocortisone has helped quite a bit
In context ↗ - low-dose naltrexone · Not said
I'm unsure how much benefit I've gotten from the LDN (been taking it for a few years now)
In context ↗ - valcyclovir · Helped
I also did a few rounds of valcyclovir/acyclovir prescribed through her, which helped raise my baseline a bit
In context ↗
Approaches: POTS medication · Antivirals
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2023-03-13 | gentle recumbent biking and pacing to keep POTS steadyI bought a recumbent exercise bike off of Facebook marketplace and petal on medium-low to medium resistance for \~ 30mins a few times per week. Sometimes more, sometimes less depending on what my body tells me.In context ↗ | Moderate | |
| 2023-07-03 | POTS and sleep issues sorted; able to work part timeGetting my POTS and sleep issues sorted really has improved my quality of life. I still struggle with significant fatigue but am able to work part time now.In context ↗ | Mild | Fludrocortisone / Florinef |
| 2023-07-13 | antivirals raised baseline a bitI also did a few rounds of valcyclovir/acyclovir prescribed through her, which helped raise my baseline a bitIn context ↗ | Mild | Valtrex / valacyclovir |
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
helps keep my POTS from getting worse
In context ↗ - Sleep problems
Getting my POTS and sleep issues sorted really has improved my quality of life.
In context ↗ - Post-exertional malaise
I do have to be careful not to over-exert myself.
In context ↗
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