ME/CFS
Mild → no benefitIll for 15 yearsNeeds ongoing treatment
ME/CFS, constant pain and crashes while working, no improvement from methadone or cannabis
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 15 years
- Last post
- Feb 2023
In their words
- Condition: ME/CFS
I got CFS from a severe case of Mononucleosis 15 years ago and haven't been the same since.
In context ↗ - At worst: Mild
working full time to support a family of 4 with CFS, Fibro, and Chronic pain
In context ↗ - Now: No benefit
I've grown accustomed to the pain, fatigue, and everything else that comes with it, but it still never really seems to get any easier.
In context ↗ - Began after: glandular fever or EBV
I got CFS from a severe case of Mononucleosis 15 years ago
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
A 30-year-old man who developed CFS after severe mononucleosis 15 years earlier, and has fibromyalgia and chronic pain from multiple injuries. He worked full time as a forklift driver, using methadone, medical cannabis and a daily Red Bull to get through the day, and said all his energy went to work. He had constant pain, light and sound sensitivity, and crashes after overdoing it; he was still working but exhausted.
Ask Miruvor AI
What they tried
Also tried
medical marijuana / THC concentrates· Helped a lotwhite noise (fan)· HelpedRed Bull (caffeine)· HelpedTylenol· No changeKratom· Not saidMethadone· Not saidpacing· Not said
Their words about each treatment
- white noise (fan) · Helped
I've gotten so used to its sound that I don't really pay attention to it consciously now, but I actually kind of need it on
In context ↗ - Tylenol · No change
took Tylenol and it still hurts
In context ↗ - Kratom · Not said
I've never had an issue with it and haven't seen or heard anyone else complain of any
In context ↗ - Methadone · Not said
I also take a high dose of methadone to help with the pain every morning
In context ↗ - medical marijuana / THC concentrates · Helped a lot
It helps me tremendously to function throughout the day. I'm so used to it that it doesn't really get me all high or have any negative effects on me
In context ↗ - pacing · Not said
I've been trying to pace myself better so that I can space my energy levels out appropriately and still have some by the time I get home from work, but it's difficult
In context ↗ - Red Bull (caffeine) · Helped
they typically boost me up enough to feel like I have "normal" levels of alertness ... but my crashes tend to be much worse when I get home than if I hadn't consumed any
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 14.9 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 |
|---|---|---|
| 15 years ago | CFS after a severe case of mononucleosisI got CFS from a severe case of Mononucleosis 15 years ago and haven't been the same since.In context ↗ | Not stated |
| September 2022 | a week of feeling worse while the weather was rainyAll of last week I felt worse than usual because the rainy weather was really affecting me, but then yesterday I suddenly felt pretty decent since it's cleared up.In context ↗ | Mild |
| September 2022 | pushed himself at midday and got a bad migraineI ended up pushing myself a bit too much midday and ended up with a bad migraine for the rest of the day.In context ↗ | Mild |
| February 2023 | still working full time, needing a daily Red Bull and crashing harder at homeI usually drink a 12 oz. Red Bull every morning for work since it helps me get through the day, but my crashes tend to be much worse when I get home than if I hadn't consumed any.In context ↗ | Mild |
Adverse events
- “my crashes tend to be much worse when I get home than if I hadn't consumed any.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodHeadaches & migraineLight & noise sensitivityPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I ended up pushing myself a bit too much midday and ended up with a bad migraine for the rest of the day.
In context ↗ - Pain & fibromyalgia
CFS, Fibro, and Chronic pain from multiple injuries (broken back, jaw fracture, etc.)
In context ↗ - Headaches & migraine
ended up with a bad migraine for the rest of the day. Woke up with it still hurting, took Tylenol and it still hurts.
In context ↗ - Light & noise sensitivity
I'll be sensitive to the lights and sounds
In context ↗ - Sleep problems
to manage my symptoms, pain, appetite, and to help me sleep
In context ↗ - Anxiety & low mood
calms my anxiety
In context ↗