Mild ME/CFS for 15 years with PEM and brain fog, much better then relapsed
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 15 years
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
Background: mild CFS for 15 years after mono.
In context ↗ - At worst: Mild
I’m able to work but any physical activities I get PEM easily.
In context ↗ - Now: Relapsed
I realized quickly after birth that my PEM was almost completely gone ... within a few weeks my normal CFS symptoms returned.
In context ↗ - Began after: glandular fever or EBV
mild CFS for 15 years after mono.
In context ↗
Read from 22 of their posts and comments; links to the 13 this page draws on
Summary
They had mild CFS for 15 years after mono: able to work, but PEM after physical activity, regular brain fog, lightheadedness on standing and depression. Working from home gave them much more energy, and giving up refined sugar helped slightly. After a baby in 2023 their PEM nearly vanished for a year, symptoms returned within weeks of weaning, and deliberately losing sleep again seemed to help a little. They remained mildly ill.
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What they tried
Also tried
Their words about each treatment
- tonsillectomy · Worse
I got worse after getting my tonsils out I believe.
In context ↗ - working from home · Helped
Working from home has allowed me to have much more energy to do things after work than I did when I went into the office every day and came home exhausted.
In context ↗ - Whole30 · Helped
I have done Whole30 before and it really did help with my energy and overall pain.
In context ↗ - off added/refined sugar · Helped
I have been off added/refined sugar for about 3 months now, and I have felt slightly better overall.
In context ↗ - Vitamin D · No change
Vitamin D and B12 they tell me. Does nothing for me.
In context ↗ - electrolyte drinks · Helped
Electrolyte drinks do seem to help!
In context ↗ - Valerian root · Helped
Valerian root helps me but I wake up with a head ache.
In context ↗ - adrenal gland supplement · No change
My naturopath had me on adrenal gland supplements. I took them for about 2 months but didn’t notice much of a difference.
In context ↗ - Wellbutrin · Not said
Wellbutrin acts as a semi stimulant for me
In context ↗ - zero gravity chair · Helped
I can vouch for the comfiness, takes all the pressure off joints too.
In context ↗ - getting less sleep at night · Helped
I am experimenting with getting less sleep and it actually seems to be helping a bit.
In context ↗ - Flu vaccine · Worse
I always feel bad for a few days after the flu shot, so I don’t get it anymore. ... Feel like I have the flu - so bedbound.
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 |
|---|---|---|
| around 2010 | Mild CFS began after monomild CFS for 15 years after mono.In context ↗ | Mild |
| 2019-02-14 | Switched to working from home, more energy after workWorking from home has allowed me to have much more energy to do things after work than I did when I went into the office every day and came home exhausted.In context ↗ | Mild |
| 2019-04-30 | Three months off added sugar, slightly better overallI have been off added/refined sugar for about 3 months now, and I have felt slightly better overall.In context ↗ | Mild |
| 2023 | After giving birth, PEM almost gone while waking every 2-3 hours to breastfeedI realized quickly after birth that my PEM was almost completely gone. I could walk longer distances, had greater energy, less brain fogIn context ↗ | Near normal |
| 2024 | Symptoms returned after weaning and sleeping through the night againWhen I stopped breastfeeding after one year my baby started sleeping through the night (so I did as well) and within a few weeks my normal CFS symptoms returned.In context ↗ | Mild |
| late 2024 | Baby's sleep regression week, symptoms betterbaby went through a sleep regression where I was having to wake up multiple times in the night, and I noticed during that week, my symptoms were better.In context ↗ | Mild |
| 2025-01-20 | Experimenting with deliberately less sleep, helping a bitI am experimenting with getting less sleep and it actually seems to be helping a bit.In context ↗ | Mild |
Adverse events
- Cutting out sugar (low-sugar diet)“Also just to note that the first week or so I felt really bad.” In context ↗ Withdrawal problems
- Sinus, jaw and tonsil surgery“Same here. I got worse after getting my tonsils out I believe.” In context ↗ Made symptoms worse
- Sinus, jaw and tonsil surgery“I experienced bleeding 10 days after the procedure. (And I mean serious bleeding where I had to go to the ER)” In context ↗ ER visit
- Flu vaccine“I always feel bad for a few days after the flu shot, so I don’t get it anymore. ... Feel like I have the flu - so bedbound.” Made symptoms worse
- Valerian“Valerian root helps me but I wake up with a head ache.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I’m able to work but any physical activities I get PEM easily.
In context ↗ - Brain fog
Have brain fog regularly.
In context ↗ - Sleep problems
I usually always get around 10-12 hours of sleep.
In context ↗ - POTS & dysautonomia
I get lightheaded every time I stand up
In context ↗ - Anxiety & low mood
a lack of appetite and also depression
In context ↗ - Pain & fibromyalgia
Less aches/pains and less ups and downs.
In context ↗
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