ME/CFS
Outcome unclear
Fibro pain and PEM with suspected ME/CFS; ginseng helped energy, neck exercises eased pain
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- Not stated
- Last post
- Apr 2024
In their words
- Condition: ME/CFS
I am not officially diagnosed with CFS but I highly suspect it.
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
A Reddit user who suspected CFS without a formal diagnosis, having fibro pain and PEM, had a sleep study in January 2023 showing mild obstructive sleep apnoea and periodic limb movements. A raised dose of Lyrica did not help the leg movements and made them worse, so they tapered off; a CPAP trial brought no improvement. Siberian ginseng was the one thing that helped them feel energised, and CCI neck exercises made their neck pain subside.
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What they tried
Also tried
anxiety meds· Helpedinjections for eczema· Helpedbirth control· HelpedSiberian ginseng (also called eleuthero)· HelpedCCI exercises· Helpedcpap· No changehot water bath, icy hot and heating pad· No changeLyrica· Worsemeloxicam· Not said
Their words about each treatment
- anxiety meds · Helped
I'm on anxiety meds, get injections for eczema, and take birth control for the heavy painful periods, which are all helping.
In context ↗ - Lyrica · Worse
The Lyrica didn’t help the leg movements at all and if anything it felt like it made it worse.
In context ↗ - cpap · No change
I also tried a cpap for the apnea but I didn’t really see an improvement
In context ↗ - meloxicam · Not said
Maybe the meloxicam took a while to kick in or something idk.
In context ↗ - hot water bath, icy hot and heating pad · No change
I tried to soak in my bathtub filled with hot water, icy hot, heating pad, and meloxicam. Nothing seemed to be working
In context ↗ - Siberian ginseng (also called eleuthero) · Helped
Siberian ginseng (also called eleuthero) has been the one thing that helps me feel energized
In context ↗ - CCI exercises · Helped
So far my neck pain seems to have completely subsided and my posture seems better.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| onset | Fatigue and PEM she suspected was CFS, with fibro pain treated by a rheumatologistpain is not my main symptom, and that I suffer from PEMIn context ↗ | |
| October 2023 | widespread pain flared a few days after a stress testI felt a lot of pain a few days after a stress test last month.In context ↗ | |
| 2024-01-23 | Siberian ginseng gave her energySiberian ginseng (also called eleuthero) has been the one thing that helps me feel energizedIn context ↗ | Eleuthero (Siberian ginseng) |
| 2024-04-17 | Neck pain subsided and posture improved after CCI exercisesSo far my neck pain seems to have completely subsided and my posture seems better.In context ↗ |
Adverse events
- Pregabalin (Lyrica)“The Lyrica didn’t help the leg movements at all and if anything it felt like it made it worse.” In context ↗ Made symptoms worse
- Pregabalin (Lyrica)“I was having other side effects as well so I eventually tapered off.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I suffer from PEM
In context ↗ - Pain & fibromyalgia
I am being treated by a rheumatologist for fibro
In context ↗ - Sleep problems
mild obstructive sleep apnea ... Periodic Limb Movement of Sleep
In context ↗ - Anxiety & low mood
I'm on anxiety meds
In context ↗