ME/CFS
Moderate → no benefitNeeds ongoing treatment
ME/CFS with constant sore throat and crashes; barely able to work, no improvement
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Oct 2024
In their words
- Condition: ME/CFS
I didn’t realize I had CFS and PEM until lockdown.
In context ↗ - At worst: Moderate
Now we are priced out of buying a home (I’m barely able to work)
In context ↗ - Now: No benefit
Nothing much I’ve tried has worked for me.
In context ↗ - Began after: another virus
I actually contracted the viral infection that left me with CFS a few months after being tapered too quickly off Effexor.
Read from 12 of their posts and comments; links to the 10 this page draws on
Summary
Bluebell 30360 dates their CFS to a viral infection, after doctors had long called it fibromyalgia; symptoms included a constant sore throat, dysautonomia, rashes and crashes. Stopping work in lockdown brought the first slight relief, and pacing means a sore throat now signals overexertion. Red light therapy and a weekly treatment did nothing; mould-driven moves lost them their home, and they remain barely able to work.
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What they tried
Also tried
Their words about each treatment
- Effexor · No change
I went back on it because the doctor told me it would help my “Fibromyalgia.” It didn’t because that’s not what I even had.
In context ↗ - red light · No change
I keep using my red light more out of habit, but don’t really feel like it does anything.
In context ↗ - far infrared saunas · Worse
I stopped for a couple weeks and realized it’d been making me worse ... It made my dysautonomia and rosacea worse.
- pacing · Helped
Since realizing it was PEM and pacing, my throat is typically not sore.
In context ↗ - mold avoidance · No change
We sold our home, got rid of most of our belongings, and moved to three different apartments over the past three years.
In context ↗ - B12 injections · No change
I took them once a week for awhile and didn’t notice any change.
In context ↗ - compression socks · Helped
I think compression socks make my legs feel stronger.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 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 | After |
|---|---|---|---|
| onset | viral infection; long treated as fibromyalgia, constant sore throatI actually contracted the viral infection that left me with CFSIn context ↗ | Mild | |
| during lockdown, two months in | stopped working and paced; first slight relief, sore throat settledAbout two months in I experienced the first slight relief in my symptoms.In context ↗ | Moderate | Pacing and the energy envelope |
| — | moved into a brand new mouldy apartment; rashes, rosacea, crashI got so much sicker there than our home we sold.In context ↗ | Not stated | |
| 2024-10-31 | still limited, cut off social media contactI unfollowed everyone on Facebook and Instagram except for the support groups I belong to for the countless illnesses I have.In context ↗ | Mild |
Adverse events
- Hyperthermia and sauna“I stopped for a couple weeks and realized it’d been making me worse because I realized I have dysautonomia.” In context ↗ Made symptoms worse
- Hyperthermia and sauna“It made my dysautonomia and rosacea worse.” In context ↗ Made symptoms worse
- Venlafaxine (Effexor)“It then took me 1.5 years to get off it again due to the withdrawals. I used the bead tapering method.” In context ↗ Withdrawal problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I didn’t realize I had CFS and PEM until lockdown.
In context ↗ - Flu-like symptoms
If it becomes sore it’s usually the first indication that I overdid it
In context ↗ - POTS & dysautonomia
I realized I have dysautonomia.
In context ↗ - Muscle weakness
I think compression socks make my legs feel stronger.
In context ↗