ME/CFS
Severe → no benefitIll for 9 months
Bedbound with ME/CFS after glandular fever, with no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 9 months
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I am in the first year of ME/CFS (post mono)
In context ↗ - At worst: Severe
Here at home I am bedbound and walking causes PEM so I have food and water brought to me and use diapers.
In context ↗ - Now: No benefit
Was mild originally, and then went through like 8 detoxes and the withdrawals worsened my condition, also pushed myself a lot to see this guy who sucked really bad.
In context ↗ - Began after: glandular fever or EBV
I got the mono that triggered this disease in rehab for benzodiazepines.
Read from 29 of their posts and comments; links to the 18 this page draws on
Summary
A 23-year-old woman with narcolepsy and Crohn’s disease developed ME/CFS after glandular fever, nine months before her latest post. Mild at first, she pushed herself into months of rolling PEM by overexerting with a new boyfriend and became bedbound. Xywav cleared her symptoms while it acted but brought daily withdrawal; kratom, alcohol, baclofen and benzodiazepines gave relief, though with dependence, withdrawal or paradoxical reaction.
Ask Miruvor AI
What they tried
Also tried
Xywav (GHB)· Helpedbenzos (Ativan / lorazepam)· Helpedkratom· Helpedalcohol· Helpedgabapentin· Helpedimmunosuppressants· No changepropanolol· No changebaclofen· Worseanti histamines· Worsedetox· Worserest / radical rest· Not saidclondine· Not saidSleep masks (Manta)· Not said
Their words about each treatment
- immunosuppressants · No change
Also I take immunosuppressants for my Crohn’s disease. Which I think has not helped my recovery.
In context ↗ - rest / radical rest · Not said
Resting as much as possible.
In context ↗ - Xywav (GHB) · Helped
But when im on Xywav my long haul symptoms are gone.
In context ↗ - benzos (Ativan / lorazepam) · Helped
Benzos have worked for me before in getting out of PEM.
In context ↗ - kratom · Helped
I also have gotten out of PEM by obliterating my opioid receptors with kratom.
In context ↗ - baclofen · Worse
I was able to get some baclofen online ... The baclofen gave me a paradoxical reaction.
- alcohol · Helped
Alcohol helps me tremendously but I am heavily kindled with alcohol withdrawals
In context ↗ - propanolol · No change
Propanolol overdose ... took 120mg of propanolol, still beating fast.
In context ↗ - anti histamines · Worse
I have RLS unfortunately anti histamines also make it worse for me.
In context ↗ - gabapentin · Helped
left with gabapentin and clondine. I was home, resting, calm, sleeping all day.
In context ↗ - clondine · Not said
left with gabapentin and clondine
In context ↗ - detox · Worse
Was mild originally, and then went through like 8 detoxes and the withdrawals worsened my condition
In context ↗ - Sleep masks (Manta) · Not said
Eye mask makes me hallucinate.
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| 2026-07-12 | pushed into severe PEM by overexerting on dates with a new boyfriendI was mild a month ago and pushed myself into severe because of a boy I am so angry with myself.In context ↗ | |
| 2026-08-30 | one week out of rolling PEM while resting in detoxI was able to get out of rolling PEM for the first time in months when I was in detox and was taking benzos and literally for one week I did nothingIn context ↗ | Lorazepam (Ativan) |
| 2026-09-13 | kratom withdrawal worsened rolling PEMI finally escaped after a 2 week kratom withdrawal that just worsened my rolling PEM.In context ↗ | |
| 2026-10-17 | still in rolling PEM 270 days after onsetSevere. Or very severeIn context ↗ |
Adverse events
- “there is a rebound, sort of mini-withdrawal every morning. Anxiety, shaking.” In context ↗ Withdrawal problems
- “while on Xywav I sleep about 8 hours only because after the rebound hits I can not sleep anymore.” In context ↗ Insomnia from treatment
- Sleep masks (Manta)“Eye mask makes me hallucinate.” In context ↗ Mood or psychiatric effects
- Baclofen“The baclofen gave me a paradoxical reaction. I’m stuck in a horrible crash.” In context ↗ Made symptoms worse
- Baclofen“Stuck in fight or flight. Really scared and suicidal.” In context ↗ Suicidal thoughts or attempt
- Propranolol (Inderal)“Propanolol overdose (heart rate was 130 this morning from alcohol hangover, took 120mg of propanolol, still beating fast.)” In context ↗ Other
- Kratom“Right now I am currently expericing opiate withdrawal from using kratom.” In context ↗ Withdrawal problems
- H1 antihistamines (unspecified)“I have RLS unfortunately anti histamines also make it worse for me.” In context ↗ Made symptoms worse
- Lorazepam (Ativan)“I’ve spent the last 6 months in rolling PEM because I’ve been in constant withdrawal- benzos, kratom, GHB, alcohol, and more.” In context ↗ Withdrawal problems
- Gabapentin (Neurontin)“Then I started to abuse the gabapentin. I’ve only been on it for 10 days total. Why am I having withdrawals from it?” In context ↗ Withdrawal problems
- “went through like 8 detoxes and the withdrawals worsened my condition” In context ↗ Withdrawal problems
Symptoms mentioned
Anxiety & low moodGut problemsHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
I am in severe pem with noise light and smell sensitivity
In context ↗ - Light & noise sensitivity
noise light and smell sensitivity
In context ↗ - Gut problems
severe nausea, vomitting all the time
In context ↗ - Pain & fibromyalgia
Body has severe burning pain all over
In context ↗ - Anxiety & low mood
I’m severely anxious
In context ↗ - Heart symptoms & palpitations
heart rate was 130 this morning
In context ↗