ME/CFS
No benefitIll for 4 years
Heavy legs lasting three years and PEM with ME/CFS, no lasting benefit from treatments
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- 4 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
its a great PEM buster for me
In context ↗ - Now: No benefit
I was not able to improve it, although I tried several drugs
In context ↗
Read from 9 of their posts and comments; links to the 9 this page draws on
Summary
A person with heavy legs that had lasted three years and had not improved despite trying several drugs reported that a herpes antiviral caused constant nausea, high-dose treatment did nothing and SS-31 did nothing. A medication eased their PEM but built tolerance quickly, so they took it only occasionally. A medication raised their heart rate without helping anxiety.
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What they tried
Also tried
Their words about each treatment
- Tenofovir · Worse
yeah I tried it. Its very effective against most herpes viruses but I didn’t tolerate it well… had bad nausea all the time and stopped it
In context ↗ - Oxaloacetate · No change
I tried high dose because some people reported it could bust PEM. But for me it literally did nothing.
In context ↗ - CBD · Helped
CBD, normal weed, benzos and meditation help me to calm down my brain
In context ↗ - low dose Abilify · Worse
for me it had no effect in anxiety. Only increased my heart rate significantly
In context ↗ - Tilidin · Worse
I tried it but it worsened my gastroparesis symptoms (like other opiates)
In context ↗ - SS-31 · No change
SS-31 did nothing for me.
In context ↗ - Pregabalin · Helped
its a great PEM buster for me. But builds tolerance fast, so I only take it once in a while
In context ↗ - Garmin · Not said
i‘m using my garmin since years now and the correlation between body battery and PEM/symptoms is at least for me really low
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 |
|---|---|
| onset | onset of heavy legs, later unable to improve themI have this heavy legs since 3 years already.In context ↗ |
| 2026-10 | still tracking with Garmin; no overall change describedi use it more to identify trends or noticing an upcoming cold early enoughIn context ↗ |
Adverse events
- Tenofovir (Viread, Vemlidy)“had bad nausea all the time and stopped it” In context ↗ Gut side effects
- Low-dose Abilify / aripiprazole“Only increased my heart rate significantly” In context ↗ Side effects
- Tilidine“I tried it but it worsened my gastroparesis symptoms (like other opiates)” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Muscle weakness
I have this heavy legs since 3 years already.
In context ↗ - Post-exertional malaise
its a great PEM buster for me.
In context ↗ - Gut problems
it worsened my gastroparesis symptoms (like other opiates)
In context ↗ - Anxiety & low mood
But for me it had no effect in anxiety.
In context ↗