Mild ME/CFS, close to stopping work, now somewhat better with Perrin Technique and LDA
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 18 months
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I’m mild and I still feel symptoms every day at my baseline
In context ↗ - At worst: Mild
I went from considering stopping working to being able to work mostly full time.
In context ↗ - Now: Somewhat better
I slowly titrated back up and am now close to my baseline before I got off the meds.
In context ↗
Read from 37 of their posts and comments; links to the 23 this page draws on
Summary
They have had mild ME/CFS for about two years, working but close to stopping work. Perrin Technique treatments, started in late 2024, brought substantial gains in baseline and resilience and let them work mostly full time. LDN helped for a while then stopped being effective; LDA clearly helped and stopping it dropped their baseline. They remain mild with daily symptoms, working reduced hours.
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What they tried
What they credit
Also tried
Their words about each treatment
- LDN · Helped
LDN helped me for a while, but stopped being effective.
In context ↗ - Perrin Technique · Helped a lot
The Perrin Technique has been a game changer for me!!!
In context ↗ - LDA · Helped
Positive. I titrated up very slowly to 2mg and at first didn’t think it was helpful.
In context ↗ - cranial sacral/vagus nerve stimulation · Helped
I’ve been getting those treatments plus more cranial sacral/vagus nerve stimulation and it does help manage symptoms!
In context ↗ - valacyclovir · No change
I tried valacyclovir for a few months but had no improvement.
In context ↗ - Insight Timer · Not said
I like the app Insight Timer.
In context ↗ - amitriptyline · Worse
I took it for a short time and had to stop because I felt like I was raging at everyone. It was terrible!!!
In context ↗ - eye mask · Helped
I’ve found an eye mask really helps calm down my mind and get me in rest mode.
In context ↗ - functional medicine doctor · Helped
I have had some improvements in functionality after working with a functional medicine doctor.
In context ↗ - supplements · Helped
my ferritin, b12, and VitD have been declining slowly. Supplements have helped.
In context ↗ - tirzepatide · No change
Maybe a very slight improvement in the last week or so but overall no positive benefits yet.
In context ↗ - bioidentical progesterone · Helped
I’ve been taking bioidentical progesterone and it has been helping.
In context ↗ - Visible and Garmin · Helped
I’ve been using visible for a few years and the color coded mapping of heart rate and exertion really helps me see where my body is at.
In context ↗ - ketotifen · No change
I was also worried about the weight gain- tried it and had no effects- positive or negative.
In context ↗ - guanfacine · Helped
I find that guanfacine helps me sleep more soundly. I tried it to reduce brain fog and sadly it doesn’t impact that, but the sleep benefit is enough that I’ll keep taking it.
In context ↗ - pacing · Helped
I’ve been pacing well if I don’t have major crashes that knock me out.
In context ↗ - COVID vaccination as treatment · Worse
I had a 1 day crash after and my body had elevated heart rate/lower capacity for about 1.5 weeks after the shots. I got both at the same time.
In context ↗
Approaches: Alternative therapies · Other drugs and medicines · Sex hormones
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2023 | ME/CFS onset, still workingI am also relatively new to this illness (18 months)In context ↗ | Mild |
| late 2024 | working but considering stopping workI went from considering stopping working to being able to work mostly full time.In context ↗ | Mild |
| April 2025 | substantial improvement in baseline and resilienceI started Perrin treatments about 4 months ago and have already had pretty substantial improvement in my baseline and overall resilience.In context ↗ | Mild |
| 2025-11-04 | crash and lower capacity after flu and Moderna shotsI had a 1 day crash after and my body had elevated heart rate/lower capacity for about 1.5 weeks after the shots.In context ↗ | Mild |
| early 2026 | baseline dropped after stopping low-dose AbilifyI went off it for a couple months and my baseline immediately droppedIn context ↗ | Mild |
| 2026-10-16 | mild, back near previous baseline on LDA and other treatmentsI’m mild and am curious how their treatments vary depending on severity.In context ↗ | Mild |
Adverse events
- Low-dose naltrexone“I had worsening symptoms from 3 to 4 mg.. with 4 I felt lightheaded often. When I cut back to 3” In context ↗ Made symptoms worse
- Amitriptyline (Elavil)“I only tried it for a weekend, but it made me feel so angry/raging that I stopped it right away. I was scared of myself on it.” In context ↗ Mood or psychiatric effects
- Low-dose Abilify / aripiprazole“was having some side effects of flashing lights in my eyes when they were closed” In context ↗ Side effects
- COVID vaccination as treatment“I had a 1 day crash after and my body had elevated heart rate/lower capacity for about 1.5 weeks after the shots. I got both at the same time.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I can tell that I’ve been pacing well if I don’t have major crashes that knock me out.
In context ↗ - Brain fog
I tried it to reduce brain fog and sadly it doesn’t impact that
In context ↗ - Sleep problems
I find that guanfacine helps me sleep more soundly.
In context ↗ - POTS & dysautonomia
another my hr might increase to that level just by standing up
In context ↗
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