Bedbound at worst with ME/CFS, much better after hysterectomy and testosterone
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 32 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
me/cfs since childhood 40+ now
In context ↗ - At worst: Very severe
from very severe and totally bedbound
In context ↗ - Now: Much better
I’m 32 years in on me/cfs been mild to severe and back to moderate and I go back and forth now.
In context ↗
Read from 88 of their posts and comments; links to the 30 this page draws on
Summary
Zephyr 24996 had ME/CFS since childhood, over 30 years, ranging from mild to very severe and totally bedbound. A hysterectomy and testosterone took them from severe to mild; pacing, rest, a powerchair and overnight oxygen brought further gains to moderate. An IIH diagnosis in late March 2026 forced 12 hours upright daily and cost ground; they now describe themselves as very severe and still crash easily from mental effort.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing and rest · Helped a lot
I pace and rest extremely consistently, and I am able to do activities that are meaningful to me.
In context ↗ - deep rest · Helped
With a very long period of deep rest I am able to do much more.
In context ↗ - increasing activity by 1% per week · Helped
I have been able to improve by increasing my activity by 1% per week.
In context ↗ - powerchair · Helped a lot
Over two years I moved from severe to moderate. 100% because of my wheelchair.
In context ↗ - overnight oxygen · Helped a lot
Overnight oxygen was a game changer for me.
In context ↗ - CPAP · Helped
It’s the only thing that HELPS my nonallergic rhinitis
In context ↗ - nighttime anti-inflammatory · Helped
Oxygen + CPAP + nighttime dosing of my anti-inflammatory which makes me sleepy.
In context ↗ - hysto · Helped a lot
A hysto and starting testosterone have significantly improved my condition.
In context ↗ - calcium channel blocker · Helped
switching to a different calcium channel blocker helped
In context ↗ - LDN · Worse
I would say that LDN definitely made me worse in terms of the difficulty of dealing with the cptsd stuff
In context ↗ - gabapentin · Much worse
Absolutely fucking wrecked me. Not a medication I would ever take again
In context ↗ - stimulant · Worse
it’s why I can’t take stimulants. Because in three months the accumulated debt comes due
In context ↗ - anti-depressants or anti-anxiety meds · Helped
Are anti-depressants or anti-anxiety meds going to cure me? No, but they did let me out of the PEM misery cycle with my mental health.
In context ↗ - promethazine · Helped
She gave me promethazine which is a type of antihistamine and anti-nausea drug ... It helped me out of my last crash
In context ↗ - meditation · Worse
Meditation made things worse for me, but I know it helps some people.
In context ↗ - therapy · Helped
It HAS worked. I am better than I was and my me/cfs has improved along with working through my cult upbringing.
In context ↗ - ultra low histamine diet · Worse
Ultra low histamine diets can produce some of these impacts ... I have been through this myself, every time I have a severe crash.
In context ↗ - water + electrolytes · Helped
Water + electrolytes keeps me out of uti jail
In context ↗ - cigarette smoke in mouth · Helped
cigarette smoke in my mouth can help, but it makes the rest of my body feel bad
In context ↗ - Qulipta · Helped a lot
Qulipta is a wonder drug tbh. I hope it comes through 🤞
In context ↗ - Earplugs and ear defenders (Loop) · Not said
they create a negative pressure sometimes, which doesn’t bother most people but I can find uncomfortable
In context ↗
Approaches: CBT & mindset · Calcium channel blockers · Other drugs and medicines · Pacing · Physiotherapy and rehab · Radical rest · Sex hormones · 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. The chart starts 29.2 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|---|
| childhood | ME/CFS since childhoodme/cfs since childhood 40+ nowIn context ↗ | Not stated | |
| December 2023 | no longer bedbound and only moderately housebound after hysterectomy and testosteroneI’m not cured, but I am no longer bed bound! And am only moderately housebound. I would consider myself mild instead of severe now.In context ↗ | Mild | Testosterone |
| August 2024 | usual level is bedrest 18-20 hours a day with a full-time powerchairMy normal level is bedrest for 18-20 hours a day, full time powerchair and very little self care.In context ↗ | Severe | |
| late 2024 | bedbound for three months after poor pacinghaving been bedbound for three months again (due to poor pacing)In context ↗ | Very severe | |
| February 2025 | couch bound and slowly improvingCurrently couch bound (step down from house bound) but slowly improvingIn context ↗ | Severe | Pacing and the energy envelope |
| January 2026 | moved from severe to moderate over two years using a powerchair, up 2-6 hours a dayOver two years I moved from severe to moderate. 100% because of my wheelchair.In context ↗ | Moderate | |
| August 2026 | IIH diagnosis, 12 hours a day upright to drain cerebrospinal fluid, losing regained groundI’m losing all the ground I’ve regained, but the alternative is blindnessIn context ↗ | Very severe | |
| September 2026 | back to moderate but going back and forth, crashes easily from mental effortbeen mild to severe and back to moderate and I go back and forth nowIn context ↗ | Moderate |
Adverse events
- Meditation, yoga, breathwork“Meditation made things worse for me” In context ↗ Made symptoms worse
- Low-dose naltrexone“LDN definitely made me worse in terms of the difficulty of dealing with the cptsd stuff” In context ↗ Mood or psychiatric effects
- CBT and psychotherapy“I probably only do five or ten minutes of work in therapy because I give myself PEM after that.” In context ↗ Made symptoms worse
- Gabapentin (Neurontin)“Absolutely fucking wrecked me. Not a medication I would ever take again” In context ↗ Made symptoms worse
- Low-histamine diet“Ultra low histamine diets can produce some of these impacts ... I have been through this myself, every time I have a severe crash.” In context ↗ Gut side effects
- Stimulants (unspecified)“it’s why I can’t take stimulants. Because in three months the accumulated debt comes due that I thought wasn’t accumulating” In context ↗ Made symptoms worse
- Stimulants (unspecified)“Has your heart rate increased? If so, you can’t pace on it. That was my basic problem when moderate/severe with a stimulant.” In context ↗ Heart rhythm problems
- Earplugs and ear defenders (Loop)“they create a negative pressure sometimes, which doesn’t bother most people but I can find uncomfortable” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Delayed PEM from my appointment Friday, ugh.
In context ↗ - Mast cell (MCAS) & allergies
the estrogen/progesterone cycle provokes histamine release and mast cell degranulation that also contributed to my body struggling
In context ↗ - Sleep problems
Oxygen is the #1 thing that helps me sleep through the night.
In context ↗ - Pain & fibromyalgia
Pain and stress both spike my heart rate, and I am ruthless about both now.
In context ↗ - Headaches & migraine
Still have migraines, but not all the time and they’re sooo much more bearable.
In context ↗ - Gut problems
Making some progress on my constipation LOL
In context ↗ - Light & noise sensitivity
I wear noise canceling headphones, a windbreaker (I am sensitive to air blowing on my skin
In context ↗ - Heart symptoms & palpitations
Racing heart rate for me meant that I wasn’t getting enough oxygen.
In context ↗ - Anxiety & low mood
I definitely go through it sometimes, but I would say that in general I am not depressed.
In context ↗
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