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ME/CFS Very severe → relapsedIll 3 years before improving or writingNeeds ongoing treatment

Bedridden with ME/CFS, short benzodiazepine relief then worse again

Alpine 38753 on RedditLast post Oct 2026

Condition
ME/CFS
At worst
Very severe (bedbound, unable to do basic care)
Ill before improving or writing
3 years
Last post
Oct 2026
In their words
  • Condition: ME/CFSI have had severe/very severe MECFS since March. In context ↗
  • At worst: Very severeVery severe, bedridden for a year, 300 steps a day. Screen intolerance. In context ↗
  • Now: RelapsedLDA initially brought me out of very severe ME/CFS, but its benefits gradually faded, even after restarting it. In context ↗
Read from 330 of their posts and comments; links to the 71 this page draws on

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Summary

A French father of two had COVID in January 2022, recovered, then crashed in April 2023 after alcohol, cocaine, tramadol and a run, with panic/tetany and exercise intolerance. He worsened after dysautonomia/POTS and a further COVID in September 2024, becoming bedridden in late February 2025. He was severe/very severe at roughly 200–500 steps a day. Benzodiazepines gave short relief; fluoxetine, mirtazapine and a beta blocker were poorly tolerated, and LDN was only being considered.

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What they tried

What they credit

bromazepam (Lexomil)· Helped a lot · mainnebivolol· Helped a lot · mainLDA (Abilify)· Helped a lot · main · wore offtramadol· Helpedzopiclone· Helped · wore off

Also tried

melatonin· Helped · wore offdoxycycline· Helpedhydroxyzine· Helpeddaridorexant (Quviviq)· Helpedmagnesium· No changeCoq 10· No changeglutathione· No changepacing· No changeL carnitine· No changefamotidine· No changelevocetirizine· No changeantidepressants· WorseCBT and psychotherapy· Worsebrain retraining· Worsefluoxetine (Prozac)· Worsemirtazapine· Worsebisoprolol· WorseNAC· WorseLexapro (escitalopram)· Worsecompression boots· WorseLDN· Worsediazepam· Worsefludrocortisone· WorseMestinon· Worsemidodrine· WorseIVIG then SCIG· Worsesport (cycling, weight training, jogging)· Much worsestellate ganglion block· Much worseDXM (dextromethorphan)· Much worseyoga nidra· Not saidsodium cromoglycate· Not saidketamine· Not saidthiamine· Not saidaspirin· Not saidsalt, electrolytes and compression stockings· Not saidsalt, electrolytes and compression stockings· Not said
Their words about each treatment
  • tramadol · Helpedtwo years ago I got back on my feet with tramadol and a little sport In context ↗
  • sport (cycling, weight training, jogging) · Much worseI forced myself for two years to want to get back in shape by doing sport In context ↗
  • antidepressants · Worsemy doctor gave me antidepressants which made me even more exhausted In context ↗
  • CBT and psychotherapy · WorseIt made things worse because at the time I thought I had panic disorder. In context ↗
  • brain retraining · WorseI did CBT, brain retraining, confronting deep fears and I ended up severe In context ↗
  • melatonin · HelpedI was happy, I had 5 good nights, just with melatonin In context ↗
  • bromazepam (Lexomil) · Helped a lotit erases all the pem effects with the smallest dose (1/4) for 24 hours In context ↗
  • magnesium · No changeI take 6 super expensive food supplements, for nothing. In context ↗
  • doxycycline · HelpedThe doxycycline also helps me a bit, I think, more energetic, I sleep better. In context ↗
  • fluoxetine (Prozac) · WorseI tried fluoxetine yesterday at a mini dose (10 mg) and I had a terrible night with nightmares and insomnia In context ↗
  • zopiclone · HelpedBenzo and zoplicone I sleep well and I feel better In context ↗
  • pacing · No changePacing is not working because im depressed. In context ↗
  • mirtazapine · WorseMirtazapine (7.5) increases my bpm the next morning In context ↗
  • bisoprolol · Worsethe last time I had a crash with bisporolol In context ↗
  • hydroxyzine · HelpedI take hydroxyzine at night now, 20 mg instead of zoplicone and it works 100 times better In context ↗
  • NAC · WorseI think it gave me a huge PEM last week In context ↗
  • Lexapro (escitalopram) · WorseI wanted to take 3 mg of lexapro yesterday morning and it gave me an almost sleepless night even with a sleeping pill In context ↗
  • nebivolol · Helped a lotNebivolol in small doses and I was able to walk again and have a standing bpm between 85 and 100 In context ↗
  • L carnitine · No changeafter failing with L carnitine, Nac In context ↗
  • compression boots · WorseI bought compression boots a few months ago and they hurt me In context ↗
  • LDA (Abilify) · Helped a lotAt the time, it literally brought me out of a very severe state of ME/CFS In context ↗
  • famotidine · No changeBut it doesn't help much, I still can't walk for more than two minutes In context ↗
  • sodium cromoglycate · Not saidH1 and H2 (famotidine 40 mg and levocetirizine 5 mg) with sodium cromocyglate In context ↗
  • LDN · WorseLdn is a nightmare for me... im only at 0,6 mg after 3 months In context ↗
  • daridorexant (Quviviq) · HelpedDaridorexant is a non-hypnotic sleeping pill and works for me I'm lucky for once In context ↗
  • diazepam · WorseSo I started switching to diazepam, and I’ve been on 2 mg at night for two days now In context ↗
  • ketamine · Not saidthe doctor gave me an IV infusion of ketamine to make me drowsy In context ↗
  • stellate ganglion block · Much worseI had a failed SGB (stellate ganglion block) 10 days ago and I’m now back to very severe In context ↗
  • DXM (dextromethorphan) · Much worseI was so excited and decided to try a quarter of a 30 mg tablet In context ↗
  • fludrocortisone · WorseI tried fludocortisone twice, two weeks apart. First time at 0.050 for 4 days and I had an attack of tachycardia on the 4th day In context ↗
  • thiamine · Not saidCoenzyme Q10 400 mg, Thiamine In context ↗
  • aspirin · Not saidAspirin and sodium cromocyglate before meal at midday In context ↗
  • Mestinon · WorseMestinon him m, at 10 mg gave me a tachycardia at 140 10 minutes later In context ↗
  • midodrine · WorseI couldn't tolerate midrodine (my pulse jumped to 120 bpm 10 minutes after a quarter of a tablet) In context ↗
  • salt, electrolytes and compression stockings · Not saidI take salt, electrolytes, LDN (1 mg), and compression stockings In context ↗
  • IVIG then SCIG · Worseje me sens mal à j+3, voire très mal In context ↗

Approaches: Benzodiazepines · Beta-blockers · Other drugs and medicines

Their path

Very severeSevereModerateMildNear normalRecoveredonset12 mo2 y3 y4 y

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
WhenWhat happenedWhere they wereAfter
January 2022Onset after alcohol and tramadol; COVID 12 days laterI probably became ill in January 2022 after mixing alcohol and tramadol In context ↗Mild
September 2022Remission; back to sport, work and social lifeBrief total remission from September (I had covid) to April 2023. In context ↗Near normal
April 2023Panic attack and tetany after a run; mild ME/CFS beginsThen in April 2023, after a night out with friends, I played sports the next day and had a panic attack followed by tetany with convulsions. In context ↗Mild
July 2024POTS/dysautonomia appeared after antidepressantsin July 2024, after a useless course of antidepressants (I went through a year of CBT for nothing), I contracted POTS In context ↗Moderate
September 2024COVID worsened him to moderateThen, in September 2024, I got COVID, and I became really moderate this time. In context ↗Moderate
March 2025Bedridden in the dark after series of crashesBarely 150 to 200 steps a day, digestion almost impossible, stuck in the dark, the slightest noise drove me crazy. In context ↗Very severe
April 2025Able to walk more on a mini dose beta-blockerThen April May 500 to 800 thanks to mini dose nebivolol. In context ↗Severe
July 2025Summer plateau on low-dose aripiprazoleI was able to average 1,500 steps for two months, one shower per week, better screen and light tolerance. In context ↗SevereLow-dose Abilify / aripiprazole
August 2025Effect of LDA faded, back to 800-1000 stepsthen suddenly at the end of August everything stopped In context ↗Severe
October 2025Failed stellate ganglion blockI had a failed SGB (stellate ganglion block) 10 days ago and I'm now back to very severe. In context ↗Very severe
October 2026Still bedridden; LDA taper crash, IVIG and SCIG gave no benefitI felt as though I had suddenly fallen back into very severe ME/CFS. In context ↗Very severe

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitusVision problems
Their words about their symptoms
  • Post-exertional malaisefor the past 9 months I've been terribly tired the day after I exercise In context ↗
  • Brain fogI have been suffering from brain fog for three years In context ↗
  • POTS & dysautonomiaI develop dysautonomia: my heart races at the slightest effort, I'm almost in pots In context ↗
  • Sleep problemswaking up between 3:30 a.m. and 5 a.m. In context ↗
  • Headaches & migrainemigraines and daily tinnitus In context ↗
  • Gut problemsdigestion almost impossible In context ↗
  • Light & noise sensitivityI'm developing an intolerance to noise In context ↗
  • Muscle weaknessI felt my quadriceps legs weak In context ↗
  • Neuropathy & tinglingI had tingling all over my body In context ↗
  • Anxiety & low moodI have dark thoughts, I think about... suicide In context ↗
  • TinnitusI have terrible tinnitus all day long In context ↗
  • Temperature regulationfeeling of permanent cold In context ↗
  • Breathlessnesswhen I get up it's awful: tachycardia at 120, shortness of breath In context ↗
  • Pain & fibromyalgiawalking a little gives me horrible pain in my legs a few hours later In context ↗

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