ME/CFS
Moderate → no benefitIll for 26 years
ME/CFS since teens after mono, mostly home and often in bed, no improvement
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 26 years
- Last post
- Nov 2024
In their words
- At worst: Moderate
I’m no longer working (haven’t since 2015), am on disability, and spend 90% of my time at home
In context ↗ - Now: No benefit
I’m still so tired even with medication
In context ↗ - Began after: glandular fever or EBV
I was 15 my first time getting mono, and never got back to normalcy.
In context ↗
Read from 10 of their posts and comments; links to the 9 this page draws on
Summary
They developed CFS after mono at 15 and had not returned to normal by 41, when they were on disability, spent most time at home and often in bed or a recliner. Adderall gave a few productive hours but did not relieve the fatigue, and they had weeks of PEM, depression, anxiety, nausea and migraines. An upper GI scope found a bezoar and GERD; the treatment left their CFS symptoms a little worse.
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What they tried
Also tried
Adderall· Helpedpacing· Helpedmeditation· Helpedzofran· HelpedCBT· Helpedmeds for depression and anxiety· Helpedpyloric dilation· Not saidpapaya juice· Not saidCoca Cola· Not saidbitters· Not said
Their words about each treatment
- Adderall · Helped
It "helps" so I can get a few good hours of productivity, but a lot of days, im still in bed or sitting in my recliner.
In context ↗ - pacing · Helped
I have days where my pacing works well, but there are days that I literally can’t stop what I’m doing
In context ↗ - meditation · Helped
Ahh yes, meditation is HUGE. I’ve learned a lot about Buddhism, and as hard as it is, acceptance is necessary.
In context ↗ - zofran · Helped
That’s what works best but it does have major side effects for me. But there are days the pros outweigh the cons.
In context ↗ - CBT · Helped
I have to use the “stay in my day” mindset ... It has helped me to not go off the deep end during the toughest of tough days.
In context ↗ - meds for depression and anxiety · Helped
I have the usual depression that comes with this territory, but I deal separately with bad anxiety and emotional issues, mood swings, and I take meds for those too. They help
In context ↗ - pyloric dilation · Not said
We had to do a pyloric dilation (widening the duodenum)
In context ↗ - papaya juice · Not said
I have to drink papaya juice 3x/day (I’m not complaining!)
In context ↗ - Coca Cola · Not said
and Coca Cola (if it dissolves battery acid, it’s gotta work for this!)
In context ↗ - bitters · Not said
one gal told me to try bitters, a few drops after every meal. I bought some and am very willing to give it a try.
In context ↗
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. The chart starts 17 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| age 15 | CFS began after first mono infectionI was 15 my first time getting mono, and never got back to normalcy.In context ↗ | Not stated |
| 2015 | stopped working and went on disabilityI’m no longer working (haven’t since 2015), am on disability, and spend 90% of my time at home, you could say I live a sedentary life.In context ↗ | Moderate |
| 2024-10-29 | bad PEM for a few weeksI’ve been in a bad PEM for a few weeks and I haven’t taken my adderall most days.In context ↗ | Moderate |
| 2024-10-31 | coming out of a crash, with about 25% of daily energyI’m just coming out of a crash and PEM, so I’m still vulnerable and I can use maybe 25% of my days energyIn context ↗ | Moderate |
| 2024-11-02 | stomach issues and CFS a little off after GI treatmentIt has taken a little toll on my CFS symptoms though.In context ↗ | Moderate |
Adverse events
- Ondansetron (Zofran)“That’s what works best but it does have major side effects for me.” In context ↗ Side effects
- “Mine comes from taking so many medications, especially the capsules because of what they are made of.” In context ↗ Gut side effects
- Digestive bitters“It has taken a little toll on my CFS symptoms though. It adds to the malaise “feeling unwell” so I’m a little off” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migrainePain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I’ve been in a bad PEM for a few weeks
In context ↗ - Brain fog
There are times I can’t even listen to someone talk or read or talk myself because my brain just. Can’t. Work.
In context ↗ - Sleep problems
I have 2 broken bones in my foot, because of my sleepwalking
In context ↗ - Pain & fibromyalgia
Oh did I mention pain? And how the fibromyalgia makes that even better!
In context ↗ - Headaches & migraine
chronic and cluster migraines
In context ↗ - Anxiety & low mood
I also deal with the depression and anxiety that come with the territory
In context ↗ - Temperature regulation
Raynaud’s phenomenon
In context ↗