Bedridden by ME/CFS, much better but only 1-3 hours a day after pituitary tumor treatment
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 31 years
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
I came down with me/cfs in 1994 at the age of 39.
In context ↗ - At worst: Very severe
I was so weak that I could hardly walk for many months, had to crawl to the bathroom and had lots of typical symptoms
In context ↗ - Now: Much better
I was at my worst for a few years and slowly improved over time. I'm not as well as other 71 year-olds but I can drive, shop, take care of my animals.
In context ↗ - Began after: another virus
In the summer of 1994, I got a flu-like illness, worked right through it
Read from 22 of their posts and comments; links to the 13 this page draws on
Summary
They fell ill with a flu-like illness in 1994 at 39, were bedridden for months, had to crawl to the bathroom and were fed their meals, and spent years fighting their disability insurer. They improved slowly, crediting treatment of a pituitary tumor with human growth hormone, migraine treatment, an SSRI, rest and pacing, but said they still had only 1-3 hours a day of normal activity and reported a decline in 2026.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing and rest · Helped
Once that was won, I could rest more so I improved somewhat. ... I have learned to pace myself.
In context ↗ - moving to the Southwest USA · Helped
we moved to the Southwest USA and the more quiet lifestyle helped
In context ↗ - human growth hormone · Helped a lot
they found I had a pituitary tumor and put me on human growth hormone which helped a lot
In context ↗ - migraine meds · Helped
I got treatment for my migraine headaches so my sleep improved and that helped
In context ↗ - cutting out food triggers · Helped
I cut out my triggers which for me were aged cheese, hard salami, peanuts, coffee, chocolate, tea
In context ↗ - Sumatriptan · Helped
I use Sumatriptan to get rid of a migraine once it starts.
In context ↗ - therapeutic horseback riding course · Helped
I took a therapeutic horseback riding course. During that time, I became more able to walk.
In context ↗ - SSRI (sertraline) · Helped
Taking an SSRI evened out my blood pressure somewhat. ... I also got on an SSRI (sertraline).
- sleep meds · Helped
I have found some things that help (pain meds, sleep meds, ssri, migraine meds, hormone meds, anti-virals
In context ↗ - long-term, low-dose opioid treatment · Helped a lot
I found a doctor who is willing to prescribe long-term, low-dose opioid treatment and it has been a game changer.
In context ↗ - Coq10 · Much worse
It made me exhausted and bed bound for as long as I was on it. Stopped taking it and went back to my previous baseline.
In context ↗
Approaches: Hormones & thyroid · Mould avoidance · Pacing
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| summer 1994 | flu-like illness, worked through itIn the summer of 1994, I got a flu-like illness, worked right through it, seemed to recoverIn context ↗ | Mild | |
| 1994-2002 | bedridden for months, crawled to bathroom, fed meals; quit job; fought disability insurerAt first I couldn't walk as far as the bathroom (had to crawl), couldn't fix food or shower, laid in bed all day.In context ↗ | Very severe | |
| early 2000s | pituitary tumor treated with human growth hormone; disability case won so they could rest moreOnce that was treated, I felt somewhat better over the course of several months.In context ↗ | Severe | Growth hormone (HGH, somatropin) |
| — | therapeutic horseback riding, migraine treatment, SSRI, learned to paceI took a therapeutic horseback riding course. During that time, I became more able to walk.In context ↗ | Moderate | |
| 2024-2026 | gradual decline over the last couple of years, cutting back on thingsFor the last couple of years, I have not been feeling as well, I'm cutting back on a lot of things but I still have a life.In context ↗ | Moderate | |
| 2026-07-11 | quiet rural life with animals; about 1-3 hours a day of normal activityI am not as sick as I was when I first came down with CFS but days like this remind me of my limitations.In context ↗ | Moderate |
Adverse events
- CoQ10 / ubiquinol“It made me exhausted and bed bound for as long as I was on it. Stopped taking it and went back to my previous baseline.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
If I do more, I am sick for a few days to a few weeks.
In context ↗ - POTS & dysautonomia
My symptoms became much worse upon standing
In context ↗ - Pain & fibromyalgia
it does distract me from how much my body hurts
In context ↗ - Headaches & migraine
I use Sumatriptan to get rid of a migraine once it starts.
In context ↗ - Sleep problems
pain meds, sleep meds, ssri, migraine meds
In context ↗ - Gut problems
my stomach quit emptying and I lost a lot of weight
In context ↗ - Muscle weakness
I was so weak that I could hardly walk for many months, had to crawl to the bathroom
In context ↗ - Flu-like symptoms
In the summer of 1994, I got a flu-like illness
In context ↗
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