ME/CFS
Severe → relapsedIll 4 years before improving or writing
ME/CFS: sometimes bedbound in crashes, improved then declined again
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
Still have fibromyalgia and recently diagnosed with LC MECFS.
In context ↗ - At worst: Severe
I went from moderate to mild to moderate severe.
In context ↗ - Now: Relapsed
I was at a better baseline in April, but I haven't been able to get back there.
In context ↗ - Began after: COVID
increasing back to back fibro flares, extreme exhaustion and COVID x2 gradually led me to an inability to manage work/life balance (unaware of PEM).
Read from 19 of their posts and comments; links to the 14 this page draws on
Summary
Swan 23229 had fibromyalgia since the early 2000s and dates ME/CFS to 2021, when fibro flares, exhaustion and two COVID infections began a decline, diagnosed as long-COVID ME/CFS at the end of 2024. They worked until they could not, use a powerchair for outings and are sometimes bedbound during crashes. A better baseline in April 2025 was lost for five months, and by December 2025 they reported a significant decline and mentioned genitourinary issues.
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What they tried
Also tried
Contrave ER (Bupropion 90/ Naltrexone 8 mg)· HelpedCompression stockings· HelpedLinux pillow wedge· HelpedIce cube in mouth· HelpedPowerchair· HelpedIV fluids· HelpedMigraine medication· HelpedVisible app· No changeFitbit· No changeFibromyalgia management regimen· WorsePhysical therapy, OT and chronic pain support group (fibromyalgia rehabilitation program)· Not saidSSRI medications· Not saidPacing· Not said
Their words about each treatment
- Physical therapy, OT and chronic pain support group (fibromyalgia rehabilitation program) · Not said
The treatment I received was for fibromyalgia as an outpatient at a rehabilitation hospital after injury = physical therapy, OT, chronic pain support group, etc.
In context ↗ - Fibromyalgia management regimen · Worse
I tried the same regimen used to manage my fibro. Big mistake.
In context ↗ - SSRI medications · Not said
I learned all the SSRI meds I was trying didn't work with my biomarkers.
In context ↗ - Contrave ER (Bupropion 90/ Naltrexone 8 mg) · Helped
I've only been taking Contrave ER for 2 weeks and my dose is very low ( again, off label). I find it really helps with food noise in fact it's even completely silenced.
In context ↗ - Compression stockings · Helped
It helped me to gradually built up my tolerance for sitting upright and keeping my legs up with compression stockings too.
In context ↗ - Linux pillow wedge · Helped
I recommend the Linux pillow wedge. It is great to help with repositioning in bed when in a crash or bed bound.
In context ↗ - Visible app · No change
I have used the visible app for free however I find it's not really helpful unless you can access the wearable
In context ↗ - Fitbit · No change
I've owned 2 Fitbits and I find them inaccurate with sleep tracking and irritating with heart rate monitoring
In context ↗ - Ice cube in mouth · Helped
sometimes I will take an ice cube and put it in my mouth and this helps me forget about how badly my muscles are burning in pain
In context ↗ - Powerchair · Helped
The powerchair reconnected me with my sense of autonomy and self-sufficiency, which for me is priceless.
In context ↗ - IV fluids · Helped
IV fluids, good migraine meds and an empathetic Dr. helped
In context ↗ - Pacing · Not said
What I keep struggling with, even to this day, is pacing.
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2021 | mild ME/CFS begins after back-to-back fibro flares, exhaustion and two COVID infectionsLittle did I know, this was in fact, my early onset of mild MECFS.In context ↗ | Mild |
| December 2024 | never got back to the baseline they had before ChristmasI had the energy to put the larger one away after the holidays but I never got back to that baseline since ChristmasIn context ↗ | Moderate |
| early spring 2025 | severe PEM crash and ER visit; noise and overstimulation triggered a brutal migraineI presented to ER in early spring with severe PEM and the stress from the sounds of beeping machinesIn context ↗ | Severe |
| April 2025 | reached a better baselineI was at a better baseline in April, but I haven't been able to get back there.In context ↗ | Moderate |
| July 2025 | came out of a 10-day crash, in bed but able to watch some TVJust starting to come out of a 10-day crash and can watch a bit of TV today.In context ↗ | Severe |
| September 2025 | five months without returning to the April baselineI'm going on 5 months and still haven't returned to my baseline in April.In context ↗ | Moderate |
| October 2025 | describes slipping from moderate to mild to moderate severeThis is how I went from moderate to mild to moderate severe.In context ↗ | Severe |
| December 2025 | significant decline with genito-urinary problems (interstitial cystitis, bladder irritation)Yes! Yes! The decline for me was significant.In context ↗ | Severe |
Adverse events
- “I do have a bit of constipation.” In context ↗ Gut side effects
Symptoms mentioned
Brain fogGut problemsHeadaches & migraineLight & noise sensitivityPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
I presented to ER in early spring with severe PEM
In context ↗ - Brain fog
My brain fog isn't as bad this week.
In context ↗ - Pain & fibromyalgia
Still have fibromyalgia and recently diagnosed with LC MECFS.
In context ↗ - Headaches & migraine
triggered a brutal migraine
In context ↗ - Light & noise sensitivity
The amount of overstimulation was incredible and it was physically painful
In context ↗ - Gut problems
I do have a bit of constipation.
In context ↗