ME/CFS
Severe → no benefit
ME/CFS flares with flu-like fever and bed rest, treatment gave no long-term benefit
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- May 2024
In their words
- Condition: ME/CFS
My blood work also has been wonky since developing cfs
In context ↗ - At worst: Severe
When I am in a bad cfs flare - I can barely open my eyes, my lymph nodes swell up, I get sore muscles, feverish. It’s just a completely debilitating fatigue and I HAVE to sleep/ stay in bed.
In context ↗ - Now: No benefit
It had no longterm effect on my cfs ... I can barely open my eyes
Summary
Fjord 93812, a Reddit user in r/cfs, described flares in which they could barely open their eyes, had swollen lymph nodes, sore muscles and feverish flu-like feelings, and had to stay in bed. Benadryl sometimes eased a bad flare, which they said was tied to their histamine levels. A treatment had no long-term effect on their CFS and usually left them crashing the next day. They tried birth control, which helped some symptoms but they stopped it.
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What they tried
Their words about each treatment
- ketamine · Worse
It had no longterm effect on my cfs, and I’d usually crash the next day after doing it bc it made me fatigued after it wore off
In context ↗ - Benadryl · Helped
Lots of Benadryl sometimes helps calm down a bad flare, it’s definitely tied to my histamine levels.
In context ↗ - birth control · Helped
They put me on birth control, which seemed to help some symptoms but I didn’t really like it so I recently got off of it
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were | After |
|---|---|---|---|
| — | developed CFS, distinct from lifelong autistic fatigueI always had fatigue from autism, but cfs just feels like a different monsterIn context ↗ | Not stated | |
| 2023-09-20 | crashed the day after each ketamine infusionI’d usually crash the next day after doing it bc it made me fatigued after it wore offIn context ↗ | Not stated | Ketamine |
| 2023-10-20 | bad CFS flares, bedbound with flu-like symptomsWhen I am in a bad cfs flare - I can barely open my eyes, my lymph nodes swell up, I get sore muscles, feverish.In context ↗ | Severe | |
| 2024-05-25 | birth control helped some symptoms, then stopped itThey put me on birth control, which seemed to help some symptoms but I didn’t really like it so I recently got off of itIn context ↗ | Not stated |
Adverse events
- Ketamine“I’d usually crash the next day after doing it bc it made me fatigued after it wore off” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Flu-like symptoms
my lymph nodes swell up, I get sore muscles, feverish ... I just feel really flu like / sick.
In context ↗ - Pain & fibromyalgia
I get sore muscles
In context ↗ - Sleep problems
I HAVE to sleep/ stay in bed
In context ↗ - Mast cell (MCAS) & allergies
it’s definitely tied to my histamine levels
In context ↗