ME/CFS
Moderate → relapsedIll 4.5 years before improving or writing
ME/CFS: housebound, remission then relapse, still limited; tirzepatide works, not fatigue
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 4.5 years
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
I lost over 50kg during which time I developed CFS/ME.
In context ↗ - At worst: Moderate
given I can't work and I hardly leave the house at the moment because I feel so awful
In context ↗ - Now: Relapsed
I had a period of remission for a about 6 months after having major surgery earlier this year. Unfortunately it relapsed some time after I developed shingles.
In context ↗ - Began after: nothing they could name
Yeah mine was gradual.
Read from 50 of their posts and comments; links to the 23 this page draws on
Summary
Hare 57429 describes ME/CFS that began gradually around 2020, having felt mildly affected since their teens. A six-month remission followed major abdominal surgery in 2024, but shingles and life stressors brought symptoms back and they were housebound from October 2024 and unable to work. They improved again in February 2025 without crediting a treatment and remain limited. They have used tirzepatide since July and report it works for them, though it has not helped their fatigue.
Ask Miruvor AI
What they tried
Also tried
iron infusions· Helpedtherapy· Helpeddiazepam· Helpedcodeine phosphate· Helpedweight loss (over 50kg)· No changeGarmin watch (HRV and body battery)· No changemounjaro / tirzepatide· No changegluten free diet· No changepacing· No changeVisible armband· No changemodafinil / armodafinil· Worsevenlafaxine· Worseslow walking· Not saidreduced-caffeine coffee (60:40 caffeinated to decaf)· Not said
Their words about each treatment
- weight loss (over 50kg) · No change
Nope. I lost over 50kg during which time I developed CFS/ME. So I lost the weight yet felt the worst I've ever felt in my life.
In context ↗ - iron infusions · Helped
I was being treated for anemia prior to my CFS diagnosis. I had iron infusions. It helped *something* but unfortunately didn't make the other symptoms go away.
In context ↗ - Garmin watch (HRV and body battery) · No change
I've had a garmin that measures HRV for the past three or so years ... I find it exactly zero help to manage my CFS.
In context ↗ - modafinil / armodafinil · Worse
I took it occasionally before I developed ME and it was great. Now it just makes me feel wired and kind of more unwell.
In context ↗ - mounjaro / tirzepatide · No change
It's not helped my fatigue but I don't think it has made it any worse. Hard to tell really as I've been in a crash for months
In context ↗ - venlafaxine · Worse
I tried it for a week before stopping because I felt fucking terrible on it. Weird nerve sensations all over my skin
In context ↗ - gluten free diet · No change
I didn't do it for ME/CFS per se as I wasn't diagnosed at that point. I did it on the suggestion of a women's health specialist to see if it helped my PMDD symptoms.
In context ↗ - therapy · Helped
I see a therapist on zoom for an hour a fortnight. Yes it is exhausting. ... It is some guaranteed safe gentle social time, and for me that is worth the exertion.
In context ↗ - pacing · No change
This winter I have a diagnosis, I have been sedentary/pacing, so unwell and dying of boredom and brain rot. I felt no better for it.
In context ↗ - diazepam · Helped
No idea but I find it helps as well.
In context ↗ - codeine phosphate · Helped
I only use it on really bad days though as tolerance builds very quickly and it's not without its own negative effects.
In context ↗ - Visible armband · No change
Between them I'm not sure either is actually much help. I've experimented playing the game with pace points, and then ignoring it and just being sensible on a good day (those are rare) and I feel absolutely no difference either way.
In context ↗ - slow walking · Not said
I walk very slowly when I feel able to. I can't say whether it does or does not contribute to symptoms but not noticably
In context ↗ - reduced-caffeine coffee (60:40 caffeinated to decaf) · Not said
I started mixing my caff beans with decaf because "full fat" coffee was proving too much for me. I do about 60:40 in the favour of caff.
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 |
|---|---|---|
| 2020 (4-5 years before January 2025) | gradual onset, mild since teens, more noticeable weakness and achingmine was gradual. Fairly sure I've had it mildly since my teens now I think about it.In context ↗ | Mild |
| spring/summer 2024 | six-month remission after major abdominal surgeryafter major surgery I had the only period of remission I've had since I started having symptomsIn context ↗ | Mild |
| 2024, after surgery | symptoms crept back after shinglesafter I had shingles symptoms started to creep back in over the following monthsIn context ↗ | Moderate |
| beginning of October 2024 | housebound, unable to workI can't work and I hardly leave the house at the moment because I feel so awful.In context ↗ | Moderate |
| middle of February 2025 | started feeling better againCome the middle of February I miraculously started feeling better again.In context ↗ | Mild |
| April 2025 | still limited, good days rareI still have days where I cry because I'm so fucking lonely, bored, or unwell.In context ↗ | Mild |
Adverse events
- Tirzepatide (Mounjaro, Zepbound)“I have been using mounjaro since the beginning of July and I feel like it's had a negative effect on me. I'd actually had the longest period of remission I'd had in over 18 months and about a month after starting mounjaro I started getting weak and wobbly again.” In context ↗ Made symptoms worse
- Tirzepatide (Mounjaro, Zepbound)“Hasn't helped me at all. I've been on it since July and I've been in a horrible, worsening crash since September.” In context ↗ Made symptoms worse
- Modafinil / armodafinil“Now it just makes me feel wired and kind of more unwell.” In context ↗ Made symptoms worse
- Venlafaxine (Effexor)“Anyway I tried it for a week before stopping because I felt fucking terrible on it. Weird nerve sensations all over my skin, I felt like my entire body and brain had pins and needles and I felt unsafe to drive.” In context ↗ Nerve pain
Symptoms mentioned
Their words about their symptoms
- Temperature regulation
I get awful chills.
In context ↗ - Muscle weakness
I started getting weak and wobbly again
In context ↗ - Pain & fibromyalgia
unexplained body aches
In context ↗ - Anxiety & low mood
I still have days where I cry because I'm so fucking lonely, bored, or unwell.
In context ↗ - Headaches & migraine
I will get a headache in the following hours or the next morning
In context ↗