ME/CFS
Severe → no benefitNeeds ongoing treatment
In bed until evening with ME/CFS, not improving; only benzos calm their nerves
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I've found VR a way to stay sane with PoTS and ME EDS etc
In context ↗ - At worst: Severe
I tend to feel like a human in the evenings like 5pm onwards I can get out of bed.
In context ↗ - Now: No benefit
I'm not getting better he knows that
In context ↗
Read from 13 of their posts and comments; links to the 10 this page draws on
Summary
A Reddit user with ME, POTS and EDS describes being in bed until evening, broken unrefreshing sleep, flu-like feelings, panic-like adrenaline rushes and gut trouble, and says they are not getting better. Benzos bought online and then prescribed by their GP are the only thing that calms their nervous system enough to enjoy things. Nicotine patches caused a weird allergic reaction and Wegovy 1 mg did not help their symptoms.
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What they tried
Also tried
salt nic vape 11mg· Helpedmontekulast· Helpedbenzos· Helped · wore offOura ring· Helpedwegovy· No changepatches· WorseDiazepam (Valium)· Worsesudafed· Not saidbottles of saline· Not saidoramorph· Not saidcocodomol· Not said
Their words about each treatment
- salt nic vape 11mg · Helped
I wonder if this is why I really rely on my vape to get me moving in a morning? I tried to quit nicotine and I just felt so less able to do things.
In context ↗ - patches · Worse
I did try patches to quit but I had a weird allergic reaction to them.
In context ↗ - montekulast · Helped
It's supposedly to dry up excess mucus and without it I feel even worse sadly so it's a fair trade off
In context ↗ - benzos · Helped
benzos help me have a quality of life ... It's the only thing that calms my nervous system down enough to do things that I enjoy.
In context ↗ - sudafed · Not said
It's sudafed and bottles of saline. I'm trying to get off the stuff but it's crap having a blocked nose all day.
In context ↗ - bottles of saline · Not said
It's sudafed and bottles of saline.
In context ↗ - Oura ring · Helped
I got an Oura ring and it shows the same thing. I know when my body is stressed now and it helps so much!
In context ↗ - oramorph · Not said
I'm already on oramorph and cocodomol.
In context ↗ - wegovy · No change
I'm not microdosing but I've stayed on 1MG of wegovy for a few months now and it does not help my symptoms in any way.
In context ↗ - Diazepam (Valium) · Worse
I tried to push through things with diazepam and while I felt great I'm paying for it now.
In context ↗
Adverse events
- “2.5mg absolutely zonks me out at night and in the day” In context ↗ Side effects
- Nicotine patches“I did try patches to quit but I had a weird allergic reaction to them.” In context ↗ Allergic reaction / anaphylaxis
- Diazepam (Valium)“I tried to push through things with diazepam and while I felt great I'm paying for it now.” In context ↗ Made symptoms worse
- Montelukast / Singulair“They turned into nightmares after taking montekulast to help with my asthma.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodFlu-like symptomsGut problemsMast cell (MCAS) & allergiesPOTS & dysautonomiaSleep problems
Their words about their symptoms
- POTS & dysautonomia
I've found VR a way to stay sane with PoTS and ME EDS etc
In context ↗ - Sleep problems
My sleep schedule is awful lately like 3am till 7am?
In context ↗ - Flu-like symptoms
I get the Flu like feelings too.
In context ↗ - Gut problems
my stomach usually goes with everything else.
In context ↗ - Anxiety & low mood
I suffer terribly with adrenaline rushes like panic attacks too
In context ↗ - Mast cell (MCAS) & allergies
I struggled with allergies from watches in the past.
In context ↗