ME/CFS after mono, dropped out of college, now somewhat better with supplements and pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Dec 2022
In their words
- Condition: ME/CFS
Since developing CFS (post mono yaaaaay)
In context ↗ - At worst: Severe
I was suddenly more sick than ever before, and went from having no sensory issues to having to shut myself off from the world for weeks at a time.
In context ↗ - Now: Somewhat better
my numbers are getting better, and yet there is this just this block I can not get past.
In context ↗ - Began after: glandular fever or EBV
Since developing CFS (post mono yaaaaay)
In context ↗
Read from 12 of their posts and comments; links to the 12 this page draws on
Summary
Shore 35806 developed ME/CFS after mono and had to drop out of college and move back in with her mother. A specialist's supplement plan helped; brain retraining and a pacing system helped after a family tragedy left her more sick than ever. She remained limited, and a Lexapro trial brought 2-3 seizures a day; she was still crashing in December 2022.
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What they tried
What they credit
Also tried
Their words about each treatment
- acupuncture · Much worse
once she sticks the needles in my ears I start to loose consciousness
In context ↗ - supplement treatment plan from a CFS specialist · Helped a lot
she helped me create a treatment plan which is entirely made of supplements & 6 months in my health has improved dramatically
In context ↗ - intensive rest and lying in the dark · Helped
I’ve learned to just stay off screens when it’s happening and lay down in the dark ... it’s the only thing that makes it go away
In context ↗ - pacing with green/yellow/red energy zones · Helped
it is possible to become more friendly/gentle/aquatinted with your body and its needs & i would say that has been the biggest game changer for me
In context ↗ - Bupropion/Wellbutrin · Helped
It helped me a lot at first but eventually the benefits became less and less.
In context ↗ - therapy · Not said
Both my specialist and therapist agree that I’m stuck in some sort of emotional PTSD
In context ↗ - brain retraining (Gupta Program) · Helped a lot
I have & it’s been radically helpful.
In context ↗ - DNRS · Not said
I personally found the Gupta Program to be a lot more helpful than DNRS
In context ↗ - meditation · Helped
Meditation has helped me a lot more than I ever expected
In context ↗ - Lexapro · Much worse
after 2 weeks on lexapro, my brain crashed so badly that i had 2-3 seizures a day
In context ↗ - Prozac · Helped
switched to prozac at literally the smallest dose they make
In context ↗
Approaches: Brain retraining · Mind-body practices · Pacing
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. 5 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | ME/CFS after mono; dropped out of college and moved back in with her motherSince developing CFS (post mono yaaaaay) I had to drop out of college, move back in with my momIn context ↗ | Moderate | |
| 2019 | worst crash to date after traumatic life experiencesthen some traumatic life experiences went down and I had my worst crash to dateIn context ↗ | Severe | |
| 2020 | specialist's all-supplement treatment plan; health improved but capacity still very low6 months in my health has improved dramatically and although i still have a super low capacity, its stabilizing for the first time everIn context ↗ | Moderate | |
| 2020 | family tragedy; more sick than ever, new sensory issues, shut off from the world for weeksI was suddenly more sick than ever before, and went from having no sensory issues to having to shut myself off from the world for weeks at a time.In context ↗ | Severe | |
| 2021 | brain retraining; numbers improving but a block remainedI have & it’s been radically helpful.In context ↗ | Moderate | |
| 2022 | energy-zone pacing system plus daily meditation; learned to read her bodyultimately created a much healthier/safer relationship w both my body and my CFSIn context ↗ | Moderate | Pacing and the energy envelope |
| 2022 | Lexapro caused a brain crash with 2-3 seizures a day; switched to tiny-dose Prozac titrationafter 2 weeks on lexapro, my brain crashed so badly that i had 2-3 seizures a dayIn context ↗ | Severe | |
| 2022-12 | faded during a doctor's appointment; hours in the dark with a headachei started fading today in the middle of a drs appointmentIn context ↗ | Moderate |
Adverse events
- Bupropion (Wellbutrin)“Only con I’ve had is it’s made it hard for me to keep any weight on- which was already an issue with my semi constant IBS flare ups.” In context ↗ Side effects
- “right after starting my treatment i actually had my longest crash to date” In context ↗ Made symptoms worse
- Acupuncture“once she sticks the needles in my ears I start to loose consciousness- letting her know right before I pass out.” In context ↗ Other
- Escitalopram (Lexapro)“yes, after 2 weeks on lexapro, my brain crashed so badly that i had 2-3 seizures a day.” In context ↗ Made symptoms worse
- Escitalopram (Lexapro)“lexapro significantly helped my depression symptoms but caused a lot of other issues” In context ↗ Side effects
- “aka 3 other meds i had severe reactions to” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
red days were days i was actively crashed/in a state of PEM
In context ↗ - Brain fog
more of like a noisy/buzzy brain fog
In context ↗ - POTS & dysautonomia
Both seem to cause a sense of vertigo for me when it gets really bad.
In context ↗ - Light & noise sensitivity
mine seems to be triggered my a mixture of sound and light
In context ↗ - Headaches & migraine
my headache barely subsiding hoursss later
In context ↗ - Gut problems
my semi constant IBS flare ups
In context ↗ - Anxiety & low mood
lexapro significantly helped my depression symptoms
In context ↗ - Muscle weakness
my body feels like its the weight of several sand bags
In context ↗
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