ME/CFS
Moderate → no benefit
ME/CFS with PEM triggered by leaving the house; Midodrine brought no benefit
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Jun 2025
In their words
- Condition: ME/CFS
I went from just having endometriosis to having endometriosis, fibromyalgia, ME/CFS and IST
In context ↗ - At worst: Moderate
now I'm getting severe PEM from a short physio appointment close to home
In context ↗ - Now: No benefit
My threshold for PEM has worsened severely over the last couple of months.
In context ↗ - Began after: nothing they could name
I went from just having endometriosis to having endometriosis, fibromyalgia, ME/CFS and IST.
In context ↗
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
A 24-year-old woman with endometriosis, fibromyalgia, ME/CFS and IST has post-exertional malaise worsening until leaving the house or washing her hair could trigger it. A 2.5 mg Midodrine trial eased breathlessness on stairs but brought chills, nausea, headache, poor concentration and a flare of pelvic floor problems; she was not keen to repeat the side effects and planned to try once daily for a few days to see if they were just adjustment.
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What they tried
Also tried
Their words about each treatment
- painkillers · Worse
any time I've had to take a medication, from antibiotics to painkillers that aren't OTC ... I've never had benefits outweigh the side effects
In context ↗ - antibiotics · Worse
any time I've had to take a medication, from antibiotics to painkillers that aren't OTC ... if a side effect is possible, I'll end up with it
In context ↗ - laparoscopy · No change
have gotten worse despite my laparoscopy meant to have at least somewhat improved my endometriosis symptoms (incl fatigue)
In context ↗ - physio · Worse
now I'm getting severe PEM from a short physio appointment close to home
In context ↗ - avoiding triggers · Not said
my only hope of even just improving my threshold so that the PEM isn't set off so easily ... is by not triggering it unless necessary
In context ↗ - Midodrine · Worse
I was really optimistic to try Midodrine (2.5mg) ... But I feel like I'm having a full-blown flare: chills, nausea, headache, can't concentrate
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 | After |
|---|---|---|---|
| — | ME/CFS diagnosed alongside endometriosis, fibromyalgia and IST; could still manage occasional social eventsI went from just having endometriosis to having endometriosis, fibromyalgia, ME/CFS and IST.In context ↗ | Mild | |
| February 2025 | PEM threshold worsened; severe PEM from a short physio appointment and from leaving the house or washing her hairMy threshold for PEM has worsened severely over the last couple of months.In context ↗ | Moderate | |
| 2025-06-12 | Midodrine trial set off a full-blown flare with chills, nausea, headache and poor concentrationI feel like I'm having a full-blown flare: chills, nausea, headache, can't concentrateIn context ↗ | Moderate | Midodrine |
| 2025-06-12 | Still feeling pelvic floor flare after Midodrine wore offI'm still feeling the effects of that even now that the medication has worn offIn context ↗ | Moderate |
Adverse events
- Midodrine“I feel like I'm having a full-blown flare: chills, nausea, headache, can't concentrate, really 'off' feeling like one does when they're unwell.” In context ↗ Side effects
- Midodrine“the flareup of my pelvic floor issues (that have been in remission) ... still feeling the effects of that even now that the medication has worn off” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsPain & fibromyalgiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
now I'm getting severe PEM from a short physio appointment close to home
In context ↗ - Pain & fibromyalgia
conditions like fibromyalgia (which I also have)
In context ↗ - Heart symptoms & palpitations
having endometriosis, fibromyalgia, ME/CFS and IST
In context ↗ - Brain fog
chills, nausea, headache, can't concentrate
In context ↗ - Headaches & migraine
chills, nausea, headache
In context ↗ - Breathlessness
I didn't get puffed out going up and down the stairs
In context ↗