ME/CFS
Severe → no benefitIll for 35 years
ME/CFS for 35 years, bedbound to working with pain, now housebound and sicker
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 35 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I mostly connected with other PWME on forums as I spent most of my late 20s and early 30s desperately seeking treatment options and ideas.
In context ↗ - At worst: Severe
I've been everything from totally bedbound to able to work
In context ↗ - Now: No benefit
getting progressively sicker
In context ↗
Read from 10 of their posts and comments; links to the 7 this page draws on
Summary
Lynx 32757 got sick at age 10 and was ill for 35 years, ranging from totally bedbound to able to work while in chronic pain. She said no treatment worked much beyond pacing, aggressive rest and plugging nutritional gaps. She became housebound again with worsening gastroparesis, overactive bladder and chronic pain, and in 2025 said she was getting progressively sicker.
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What they tried
Also tried
pacing· Helpedaggressive rest· Helpedplugging nutritional gaps (nutritional supplements)· Helpedamitripyline· HelpedPromethazine· Helpedmedication I've been on for 5 weeks· Helpedtolteridone· Not saidmeal replacement shakes and semi solid foods· Not saidtrauma therapy· Not saidmultivitamin· Not said
Their words about each treatment
- pacing · Helped
I never found a treatment that overly worked beyond pacing, aggressive rest, and plugging nutritional gaps etc.
In context ↗ - amitripyline · Helped
I've been doing a lot better with it since they put me on amitripyline for the pain
In context ↗ - tolteridone · Not said
tolteridone for urge incontinence (I have OAB)
In context ↗ - meal replacement shakes and semi solid foods · Not said
I am on meal replacement shakes and semi solid - semolina, tapioca, rice pudding etc.
In context ↗ - Promethazine · Helped
I do find it helps me to get drowsy to sleep and it also helps with the nausea I get from Gastroparesis
In context ↗ - trauma therapy · Not said
I am currently in trauma therapy and will likely be doing it on and off for the rest of my life.
In context ↗ - medication I've been on for 5 weeks · Helped
I've been on them for 5 weeks now and it has helped my inflammatory-related pain so much.
In context ↗ - multivitamin · Not said
the only one that doesn't make me feel ill when I take it
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| aged 10 | fell ill at age 10I'm not in my 20s anymore, I'm 45, but I got sick aged 10In context ↗ | Moderate |
| over the decades | totally bedbound at her worstOver the decades, I've been everything from totally bedbound to able to workIn context ↗ | Severe |
| — | able to work again but ill with chronic painbut even when I was able to work, I was ill and had chronic painIn context ↗ | Mild |
| — | had to give up work and became housebound again with comorbid conditionsI had to completely give up and was housebound againIn context ↗ | Severe |
| 2025 to 2026 | progressively sicker, gastroparesis worse, mostly on meal replacement shakesI am on meal replacement shakes and semi solid - semolina, tapioca, rice pudding etc. ... I am constantly battling dehydration.In context ↗ | Severe |
Adverse events
- “the only one that doesn't make me feel ill when I take it” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodGut problemsPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I've been there and done that and learnt from the experience and am still learning.
In context ↗ - Pain & fibromyalgia
even when I was able to work, I was ill and had chronic pain
In context ↗ - Gut problems
How are you getting on with the gastroparesis? Mine worsened a lot since November.
In context ↗ - Sleep problems
I do find it helps me to get drowsy to sleep
In context ↗ - Temperature regulation
My daughter and I have been sleeping on our living room floor as it is far cooler than our bedrooms.
In context ↗