ME/CFS too weak to stand in shower, much better with psilocybin and keto
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 7.5 years
- Last post
- Feb 2023
In their words
- Condition: ME/CFS
I was diagnosed with fibromyalgia, IC, cfs/me.
In context ↗ - At worst: Moderate
I’d have to sit in the shower because I’d feel too weak to stand.
In context ↗ - Now: Much better
I've been pretty good here!
In context ↗
Read from 18 of their posts and comments; links to the 12 this page draws on
Summary
Prairie 32752 had ME/CFS for 7-8 years, along with fibromyalgia and painful bladder syndrome; at worst they were not bedbound but too weak to stand in the shower and unable to read from brain fog. Having an infected root canal tooth pulled in 2020 gave a burst of improvement that subsided when infection remained. Microdosing psilocybin every three days took them from three naps a day to walking and running again, and then a keto diet helped them do about four things a day.
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What they tried
What they credit
Also tried
Their words about each treatment
- Adderall · Worse
I often crash HARD the next day, but I so relish feeling more mentally & physically capable, and focused.
In context ↗ - removal of infected root canal tooth · Helped a lot
It was infected and then pulled and I’ve been feeling SO much better
In context ↗ - antibiotics · Not said
I wasn’t thinking the antibiotics made me feel better - I was hopeful that having the infected root canal and tooth pulled might make a long term difference.
In context ↗ - 1000 supplements from a Lyme/CFS/thyroid specialist · Not said
He has me on 1000 supplements and T3, all costing a fortune. I stopped taking them for a couple days before this magical day
In context ↗ - B12 shot · No change
I did a B12 shot about a month ago but felt no change.
In context ↗ - Deplin - methylated folate · Helped
I felt normal. Hallelujah! But only lasted about a week or two. Then back to very symptomatic.
In context ↗ - Low dose naltrexone · Helped a lot
Low dose naltrexone. Same as above. Miraculous, then back into crippling exhaustion.
In context ↗ - psilocybin mushrooms · Helped a lot
I went from needing to nap 3 x a day to being able to go most days without them.
In context ↗ - Prozac · Not said
Over the next 8 months, I got off of everything (most notably Prozac, since CFS has really upped my depression)
In context ↗ - Keto · Helped a lot
This is giving me so much more energy. It even makes it harder for me to sleep at night
In context ↗ - acupuncture · Not said
My acupuncturist said to look at the trend, not the snapshot
In context ↗
Approaches: Diet · Other drugs and medicines · Surgery & structural
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. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| ~2015 | ME/CFS began (dated from 7-8 years of illness by 2023)I was diagnosed with fibromyalgia, IC, cfs/me. ... Lasted 7-8 years.In context ↗ | Not stated |
| — | at their worst, exhausted and too weak to stand in the showerI wasn’t bed bound, but at my worst it would basically be: wake up exhausted. Try to pull myself out of bed for an hour.In context ↗ | Moderate |
| 2020-08 | felt much better after infected root canal tooth was pulledIt was infected and then pulled and I’ve been feeling SO much betterIn context ↗ | Mild |
| 2020-09 | improvement subsided with tooth and infection left behindthe improvement has subsided a bit and there's some tooth and infection left behindIn context ↗ | Mild |
| 2021-11 | microdosing psilocybin brought strength backThe last couple of months it feels like I'm getting a lot of strength back and have been more myself than the last several years!In context ↗ | Mild |
| 2022-10 | fewer naps needed on microdosingI went from needing to nap 3 x a day to being able to go most days without them.In context ↗ | Mild |
| 2023-02 | walking and running again, four tasks a day on psilocybin and ketoWith shrooms I got to a point where I could maybe get two things done in a day (big progress from zero) to now comfortably being able to do four?!!In context ↗ | Mild |
Adverse events
- Amphetamine salts (Adderall)“I often crash HARD the next day” In context ↗ Made symptoms worse
- Psilocybin (magic mushrooms)“I did a proper mushroom trip which I think exacerbated the fatigue” In context ↗ Made symptoms worse
- Keto and low-carb diets“It even makes it harder for me to sleep at night (a noted side effect in some people) because I’m so energized.” In context ↗ Insomnia from treatment
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I often crash HARD the next day
In context ↗ - Brain fog
Brain fog made reading super hard and learning lines (I’m an actor) basically impossible.
In context ↗ - POTS & dysautonomia
I don’t get as light headed
In context ↗ - Sleep problems
I went from needing to nap 3 x a day to being able to go most days without them.
In context ↗ - Pain & fibromyalgia
if I’m having pain and fatigue that my body shouldn’t be registering
In context ↗ - Muscle weakness
I’d have to sit in the shower because I’d feel too weak to stand.
In context ↗ - Anxiety & low mood
I had a lot of suicidal ideation. Was horribly depressed
In context ↗
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