ME/CFS kept putting her in bed; somewhat better on ketogenic diet and naltrexone
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 33 years
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
I have ME/CFS, with fibromyalgia pain that was pervasive and unrelenting
In context ↗ - At worst: Mild
I have it, a milder case and with the decades I have learned pacing
In context ↗ - Now: Somewhat better
I am not normal yet, but I have gained a lot of function back.
In context ↗
Read from 31 of their posts and comments; links to the 19 this page draws on
Summary
Pond 39964 had ME/CFS from about age 35, diagnosed five years before her son was born when she was 40. Pregnancy and full-time breastfeeding gave relief until he was weaned at 18 months, then daily after-meal slumps kept putting her in bed. A stricter ketogenic, near-carnivore diet in late 2024 improved her energy and function, and low-dose naltrexone keeps her pain managed, so she is not normal yet but has gained a lot back.
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What they tried
What they credit
Also tried
Their words about each treatment
- serotonin reuptake inhibitor (SSRI) · Helped
I was on antidepressants for 20 years, but went off due to a CBD oil capsule straw of the camel's back serotonin syndrome incident
In context ↗ - CBD oil · Much worse
CBD oil in capsule form, which I had begun taking for insomnia
In context ↗ - caffeine · Helped
Yes, it helps me with the afternoon crashes I get after eating.
In context ↗ - ketogenic diet · Helped a lot
A more restricted keto, almost carnivore, in my case focusing on fatty fish, worked.
In context ↗ - restricted time feeding · Helped
Low carb eating, restricted time feeding (6-8 hour eating window 1-2 meals per day no snacking) greatly improved my energy levels.
In context ↗ - Low dose naltrexone (LDN) · Helped a lot
I have no discernable side-effects and my chronic pain is well-managed.
In context ↗ - shower chair · Helped
I got a minimal shower chair, measuring first to ensure it would fit my tub
In context ↗ - pacing within my energy envelope · Helped
I have learned the principle of hormesis. I think of it as an envelope of allowable exercise.
In context ↗ - walking · Helped
I will exercise in the morning and will get an hour of walking in
In context ↗ - nightshade vegetables · Helped
when I told him I had muscular pain and cramping. He said, "In my experience, that's nightshade." And it was the nightshade vegetables.
In context ↗ - zinc · Not said
the zinc I was taking heretofore unaware that they are a supplement couple
In context ↗ - copper · Not said
I needed to couple "2 mg/day of copper, no more no less" with the zinc
In context ↗ - pink rock salt · Helped
I take a few grains of pink rock salt when I get dizzy.
In context ↗ - therapist · Helped
I think a really good therapist to work on a specific problem, is well worth it.
In context ↗ - time released melatonin · Helped
time released melatonin (to initiate and reinitiate sleep during the night)
In context ↗ - progesterone · Helped
progesterone before bed
In context ↗ - sleep inducing relaxation audio · Helped
a sleep inducing relaxation audio (of a video turned away so you can't see the light)
In context ↗ - magnesium glycinate · Helped
resolves for me when I took magnesium glycinate
In context ↗ - COVID vaccination as treatment · Not said
I had a bad reaction getting them both on the same day. It took me 2 weeks to recover.
In context ↗
Approaches: Diet · Exercise and activity · Pacing
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| age 35 | ME/CFS onset, diagnosed as chronic fatigue/fibromyalgiaI had my son at 40 and had had the ME/CFS diagnosis (called chronic fatigue/fibromyalgia in those days) for 5 years.In context ↗ | |
| age 40 (pregnancy and nursing) | symptoms eased during pregnancy and full-time breastfeedingI got relief of my ME/CFS symptoms during pregnancy and while nursing and fully supplying all of his food to my infant.In context ↗ | |
| about 18 months after his birth | symptoms returned as her son was weaned onto solid foodmy ME/CFS was arrested as long as I was breast feeding, but returned as I gradually moved my son to whole foods, starting at 18 months.In context ↗ | |
| 2024 | daily after-eating slumps put her in bed; needed a shower chairpostprandial (after eating) slumps, which would put me in bed, sometimes to nap, every single day.In context ↗ | |
| 2024-11 | stricter ketogenic, near-carnivore diet; gained function and energyA more restricted keto, almost carnivore, in my case focusing on fatty fish, worked. ... I am not normal yet, but I have gained a lot of function back.In context ↗ | |
| 2025-01 | chronic pain well managed on low-dose naltrexoneI have no discernable side-effects and my chronic pain is well-managed.In context ↗ | Low-dose naltrexone |
Adverse events
- CBD (cannabidiol)“CBD oil taken for relentless insomnia had pushed me into serotonin syndrome.” In context ↗ Side effects
- Antidepressants (unspecified)“It suppressed both ends of my emotional range. That means, little joy. And it suppresses sexual desire” In context ↗ Mood or psychiatric effects
- COVID vaccination as treatment“I had a bad reaction getting them both on the same day. It took me 2 weeks to recover.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
If I notice post exertional malaise after exercise, I stop to rest
In context ↗ - Sleep problems
my insomnia is severe
In context ↗ - Pain & fibromyalgia
For chronic pain from ME/CFS, Low Dose Naltrexone made up in a compounding pharmacy has worked for me.
In context ↗ - Headaches & migraine
I have them (and ME/CFS), but usually only the ocular ones
In context ↗ - POTS & dysautonomia
I take a few grains of pink rock salt when I get dizzy.
In context ↗ - Heart symptoms & palpitations
My heart raced.
In context ↗
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