Bed-bound with ME/CFS, now much better after endometriosis surgery and methylphenidate
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5.5 years
- Last post
- Feb 2026
In their words
- Condition: ME/CFS
I don’t have a formal mecfs diagnosis yet but suspected as well as pots/fibromyalgia
In context ↗ - At worst: Severe
I would have long periods of being bed bound and then when I had to work I would use alcohol/drugs to push through. It got pretty bad at times, unable to cook, wash, feed myself etc.
In context ↗ - Now: Much better
I managed to go back to work and 4hrs a day 5 days a week has been tough but manageable-ish
In context ↗ - Began after: stress or burnout
I thought it was autistic burnout and treated it as such.
Summary
They had periods of severe, bed-bound fatigue from 2020/2021, and later dizziness, pain, insomnia, brain fog and exercise intolerance that worsened after repeated COVID infections. Endometriosis surgery in 2023 eased the fatigue; mirtazapine from April 2025 helped their POTS, sleep and mood but was stopped over weight gain. Methylphenidate in late 2025 helped enough for part-time work; Elvanse helped less and sertraline caused tremors and dizziness.
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What they tried
What they credit
Also tried
Their words about each treatment
- Endometriosis excision surgery · Helped
a lot of the fatigue improved after an excision surgery
In context ↗ - Electrolytes and compression socks · Not said
I was told to treat my symptoms as if I did (electrolytes, compression socks)
In context ↗ - Mirtazapine · Helped
I was on Mirtazapine for 9 months which helped a lot with my POTs
In context ↗ - Citalopram · Worse
Citalopram made me feel high
In context ↗ - Sertraline · Worse
Sertraline has given me tremors and extreme dizziness so I am now coming off it
In context ↗ - ADHD meds (methylphenidate) · Helped a lot
this actually helped my fatigue so much
In context ↗ - B12 injection · Helped
I had a B12 injection which did help somewhat too
In context ↗
Approaches: Other antidepressants · Stimulants · Supplements · Surgery & structural
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. 4 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2020/2021 | periods of severe fatigue; bed bound, unable to cook, wash or feed herselfI started getting periods of pretty severe fatigue in 2020/2021.In context ↗ | Severe | |
| 2023 | fatigue eased after endometriosis excision surgerya lot of the fatigue improved after an excision surgeryIn context ↗ | Not stated | |
| 2023 | moved to the other side of the world six weeks after surgery; health declinedI moved to the other side of the world 6 weeks after surgery, and my health just started to declineIn context ↗ | Not stated | |
| end of 2024 | moved home and kept declining, with worsening exercise intolerance, dizziness and painSince being home (end of 2024) I am in this constant battle with my health.In context ↗ | Not stated | |
| April 2025 | mirtazapine helped POTS, sleep, eating and moodI was on Mirtazapine for 9 months which helped a lot with my POTsIn context ↗ | Not stated | |
| November 2025 | ADHD medication helped the fatigue; back at work 4 hours a dayI managed to go back to work and 4hrs a day 5 days a week has been tough but manageable-ishIn context ↗ | Mild | Methylphenidate (Ritalin, Concerta) |
| 2026-02-15 | on Elvanse, less helpful for fatigue; coming off sertraline after tremors and dizzinessI’m on Elvanse now and it isn’t as good for the fatigueIn context ↗ | Mild | Methylphenidate (Ritalin, Concerta) |
Adverse events
- Mirtazapine (Remeron)“It did make me more tired but I could function” In context ↗ Side effects
- Mirtazapine (Remeron)“I came off due to weight gain” In context ↗ Side effects
- Citalopram (Celexa)“Citalopram made me feel high” In context ↗ Side effects
- Sertraline (Zoloft)“Sertraline has given me tremors and extreme dizziness so I am now coming off it” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
even 20 mins of this can leave me bedbound for 2 days
In context ↗ - POTS & dysautonomia
standing still without support makes me dizzy/nauseous
In context ↗ - Mast cell (MCAS) & allergies
sometimes random food reactions, itchy skin in the heat
In context ↗ - Sleep problems
waking up exhausted no matter how much sleep I get
In context ↗ - Pain & fibromyalgia
widespread physical pain - both muscular and joint pain
In context ↗ - Light & noise sensitivity
light sensitivity ... noise sensitivity
In context ↗
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