ME/CFS
Outcome unclearIll for 4.5 years
Severe flu then muscle spasms, vertigo, nausea, poor sleep and tinnitus; ME/CFS question
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 4.5 years
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
how do I know if my fibro is now ME/CFS?
In context ↗ - At worst: Moderate
Enough power to vacuum my entire 1900 sq ft house, and not heavy so I CAN vacuum my house!
In context ↗ - Began after: another virus
after a HORRIBLE flu in March
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Badger 93097 had fibromyalgia for decades; after a severe flu in March 2020 they had muscle spasms, vertigo, nausea, poor sleep and tinnitus. They asked in an ME/CFS forum whether their fibromyalgia had become ME/CFS, and used home aids such as a lightweight vacuum, shower seat, cane and tinnitus masking hearing aids. Their benign fasciculations worsened on gabapentin, and by early 2025 they were using a wearable band and app.
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What they tried
Also tried
fascial gun, Theracane and Knobble· Helpedheating pads and ice packs· Helpedcompression gloves and compression sox· Helpedcompression gloves and compression sox· Helpedtinnitus masking hearing aid· HelpedVisible armband and app· Helpedgabapentin· Worse
Their words about each treatment
- gabapentin · Worse
benign fasciculations which get worse after taking gabapentin
In context ↗ - fascial gun, Theracane and Knobble · Helped
Working out the intercostal spasms with the Knobble is great.
In context ↗ - heating pads and ice packs · Helped
Heating pads, ice packs.
In context ↗ - compression gloves and compression sox · Helped
Compression gloves to wear at night so my hands don't hurt or swell in my sleep.
In context ↗ - tinnitus masking hearing aid · Helped
My tinnitus masking hearing aids do that, and bluetooth to my phone. Really great when crickets are in my head!
In context ↗ - Visible armband and app · Helped
I love the band and app, although apparently you can use the app alone.
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 |
|---|---|---|
| March 2020 | Severe flu, followed by ongoing muscle spasms, vertigo, nausea and poor sleepafter a HORRIBLE flu in March that lasted til... well, nowIn context ↗ | Moderate |
| 2020-11-23 | Ongoing post-viral symptoms; managing at home with aids, on disabilityMy muscles are in spasm beyond just pain. Can't sleep well, but when exhaustion hits, I literally pass out. Vertigo standing or sitting, nausea and loss of appetite with it.In context ↗ | Moderate |
| 2025-01-31 | Using a Visible armband, still spending time in bedMy biggest beef is that in the 19 DAYS I've been using it, I've had to reconnect it 4 times!In context ↗ | Moderate |
Adverse events
- Gabapentin (Neurontin)“benign fasciculations which get worse after taking gabapentin” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
I've had fibro for decades.
In context ↗ - Sleep problems
Can't sleep well, but when exhaustion hits, I literally pass out.
In context ↗ - POTS & dysautonomia
Vertigo standing or sitting, nausea and loss of appetite with it.
In context ↗ - Gut problems
nausea and loss of appetite with it
In context ↗ - Tinnitus
Really great when crickets are in my head!
In context ↗ - Light & noise sensitivity
I'm quite sun sensitive.
In context ↗