ME/CFS
Severe → no benefitIll for 23 yearsNeeds ongoing treatment
Housebound with ME/CFS and constant muscle spasms, using diazepam and cannabis
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 23 years
- Last post
- Oct 2026
In their words
- At worst: Severe
I have so little functioning, barely leave the house or my sofa.
In context ↗ - Now: No benefit
I've slowly been getting worse for the past 5 years. I look back and I'm no longer able to do what I could the year before.
In context ↗
Read from 19 of their posts and comments; links to the 15 this page draws on
Summary
Flint 22940 fell ill at 17, left university, later completed a degree and raised a child, then deteriorated from about 2021 to housebound most of the time. By 2026 she said she had very little functioning, barely leaving the house or sofa, and reported severe constant agonising muscle spasms; she took diazepam for them, used cannabis edibles for pain, and planned to try a TENS machine. She said the illness had slowly worsened over five years.
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What they tried
Also tried
osteopath (perrin technique)· Helped a lottherapy (person centred, psychodynamic)· HelpedEMDR· Helpedbreathing exercises· Helpedvagus nerve stimulation· Helpedcannabis (edibles), THC & CBD· Helpeddiazapam· Helpedotc painkillers· Helpedpower chair / mobility aids· Helpedelevating legs against a wall· Helpedmuscle relaxants· Helpedvibrator massage· HelpedHRT· WorsePACE app· Not saidtens machine· Not said
Their words about each treatment
- therapy (person centred, psychodynamic) · Helped
Person centred therapy was good for me. As was psychodynamic.
In context ↗ - EMDR · Helped
The best was EMDR for trauma, but it was exhausting.
In context ↗ - breathing exercises · Helped
I managed to do some breathing exercises yesterday which pulled me out of the worst of it
In context ↗ - osteopath (perrin technique) · Helped a lot
A good osteopath (perrin technique) can make a huge difference.
In context ↗ - vagus nerve stimulation · Helped
Vagus nerve stimulation has also helped but I find it difficult to be consistent
In context ↗ - cannabis (edibles), THC & CBD · Helped
I use cannabis sometimes. I tolerate it better as edibles. ... THC &CBD also help me.
- PACE app · Not said
I found the PACE app of limited usefulness.
In context ↗ - diazapam · Helped
Diazapam helps me relax/ sleep but only for a few days.
In context ↗ - otc painkillers · Helped
Painkillers also help with emotional pain, otc ones you can tolerate within allowed dosages
In context ↗ - power chair / mobility aids · Helped
I wish I had gotten my power chair years before I did.
In context ↗ - elevating legs against a wall · Helped
In the past, elevating my legs has helped.
In context ↗ - HRT · Worse
I reacted badly to HRT.
In context ↗ - muscle relaxants · Helped
only a strong course of muscle relaxants seem to persuade them
In context ↗ - vibrator massage · Helped
I got out my f*ckn massive vibrator, started on the muscles around where it was sore and worked up to the worst ones. It gave me a lot of relief
In context ↗ - tens machine · Not said
I'm gonna try my tens machine in a bit.
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. 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 |
|---|---|---|
| age 17 | fell ill with ME/CFS at 17 and left universityI was 17 when I got ill. Had to leave university and focus on my health.In context ↗ | Moderate |
| — | got back to study, completed a degree while raising her babyI eventually got back and completed a different degree, while raising my baby.In context ↗ | Mild |
| the last three years before March 2024 | pandemic hit her hard and she became housebound most of the timeI've been a lot worse this last 3 years- the pandemic hit me really hard even though I've not had covid. I went from mild/ moderate to housebound most of the time.In context ↗ | Moderate |
| April 2026 | slow deterioration over five years to very little functioning, mostly on the sofaI've slowly been getting worse for the past 5 years. ... I have so little functioning, barely leave the house or my sofa.In context ↗ | Severe |
| October 2026 | repeated severe constant muscle spasms, unable to sleepIt is unrelenting and agonising. Like, I'm USED to being in pain. This is horrific. I feel sick. I can't sleep.In context ↗ | Severe |
Adverse events
- “It does make me sleepy, so I only really use it at night” In context ↗ Side effects
- Trauma work (EFT, EMDR, TRE)“The best was EMDR for trauma, but it was exhausting.” In context ↗ Side effects
- Hormone replacement therapy (HRT)“I'm going to be 40 this year and I'm aware that women often get worse at this age, but I reacted badly to HRT.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
It is unrelenting and agonising. Like, I'm USED to being in pain.
In context ↗ - Sleep problems
it's meant my sleep and everything are so much worse
In context ↗ - Light & noise sensitivity
Especially when my noise sensitivity is bad.
In context ↗ - Temperature regulation
I get too hot quickly and that makes me poorly.
In context ↗ - Vision problems
I come out of my appointments being able to see better sometimes!
In context ↗