ME/CFS very severe and bedbound, still extremely severe; lorazepam, magnesium helped sleep

Condition: ME/CFS
At worst: Very severe (bedbound, unable to do basic care)
Ill for: 4 years
Last post: Oct 2026

In their words

Condition: ME/CFSBesides very severe ME/CFS I also have Hashimotos and POTS In context ↗
At worst: Very severeI'm fully bedbound since 5 months In context ↗
Now: No benefitYet I have only slowly been declining. All med trials crashed me even more. In context ↗
Began after: nothing they could nameFor me the onset was reeeeaally slow

Read from 105 of their posts and comments; links to the 50 this page draws on

Summary

After two years of mild symptoms only after sport, Hill 82091 declined from mild to very severe over about five months after starting a job in late 2025. A chiropractic neck adjustment in February 2026 took them from moderate to severe. They became fully bedbound and extremely severe, resting in darkness and silence; most drugs and supplements made them worse, while lorazepam and magnesium helped sleep, though lorazepam also led to worse rolling PEM. By October 2026 they remained extremely severe.

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What they tried

Also tried

Levo (levothyroxine)· Helped Meditation / mindfulness· Helped Saccharomyces boulardii· Helped Magnesium· Helped Vitamin D3· Helped NR (Nicotinamide Riboside)· Helped Vitamin B12 injections· Helped Electrolytes· Helped Valerian tea· Helped Pacing· Helped Buteyko breathing· Helped Lorazepam· Helped St John's Wort· No change Compression stockings and compression belt· No change Low-histamine diet· No change Sinus flushing· No change Intermittent fasting· No change DAO supplement· No change Famotidine· No change Quercetin· No change Low salicylate diet· No change Nattokinase· Worse Selenium· Worse Benfotiamine (B1)· Worse Folate· Worse H1 antihistamines (Allegra/bilastine, cetirizine, desloratadine)· Worse H1 antihistamines (Allegra/bilastine, cetirizine, desloratadine)· Worse H1 antihistamines (Allegra/bilastine, cetirizine, desloratadine)· Worse H1 antihistamines (Allegra/bilastine, cetirizine, desloratadine)· Worse Oxaloacetate· Worse Ketotifen / cromolyn sodium· Worse Ketotifen / cromolyn sodium· Worse Low-dose naltrexone (LDN)· Worse Creatine· Worse Mestinon· Worse Melatonin extended release· Worse Low-dose Abilify / aripiprazole· WorseChiropractic session (with kinesiology)· Much worseRadical rest / zero stimulation (dark and quiet)· Not saidD-Ribose, D-Galactose· Not saidCoQ10· Not said NAC· Not saidAKG / Sanopal Forte· Not saidNRT / NADH· Not saidOrganic hemp and pumpkinseed protein· Not said

Their words about each treatment

Levo (levothyroxine) · HelpedIt definitely helped me and I would feel aweful with a TSH of 3.7. In context ↗
St John's Wort · No changeMy first doctor, who thought I was just depressed prescribed me some natural antidepressants (St. John's Wort), but I didn't feel any difference. In context ↗
Meditation / mindfulness · HelpedMindfulness and meditation are still helpful for me though In context ↗
Saccharomyces boulardii · HelpedI tried it when I was mild (also testet positive for h pylori) and it made me feel a bit better. In context ↗
Magnesium · HelpedMagnesium Glycinat helps me sleep. Magnesium Citrate can help with constipation. For my ME it doesn't do anything. In context ↗
Vitamin D3 · HelpedWhat helped (from most to least): NR (Nicotinamide Riboside), Vit.B12 injections, electrolytes, magnesium and vit. D3 In context ↗
Vitamin B12 injections · HelpedI am trying Nattokinase and B12 injections atm but feel like its making me worse. In context ↗
Electrolytes · HelpedElektrolytes help the palpitations but not the adrenaline. In context ↗
Compression stockings and compression belt · No changeI tried electrolytes, compression stockings and nattokinase, but nothing really made a difference. In context ↗
Nattokinase · WorseWhat made me worse: Nattokinase, antihistamines, Selenium, Vit. B1 and Folate In context ↗
Benfotiamine (B1) · WorseI tried Benfotiamin (B1) but it made me feel worse. In context ↗
Valerian tea · HelpedIf I drink a tea with fresh valerian (my parents get it for me from the pharmacy) and drink it before sleep, it helps me calm down so much! In context ↗
H1 antihistamines (Allegra/bilastine, cetirizine, desloratadine) · WorseEspecially the Cetirizin causes me to be super nervous and confused. In context ↗
Low-histamine diet · No changeI tried them out, combined with a low histamine diet, to see if I would feel better, because I thought I have MCAS. But it didn't do anything. In context ↗
Pacing · HelpedI'm slowly coming out now. Pacing only. In context ↗
Radical rest / zero stimulation (dark and quiet) · Not saidI feel like resting as much as I can doesn't change how I feel at all. In context ↗
Sinus flushing · No changeI found NOTHING that makes them even slightly more tolerable. In context ↗
Intermittent fasting · No changeI tried antihistamines, zero stimulation (dark and quiet), meditation / calming my nervous system, electrolytes, sinus flushing and intermittent fasting (to see if it has to do with certain foods). In context ↗
Chiropractic session (with kinesiology) · Much worsewhile it felt good during the session, today I am in my worst PEM so far In context ↗
Oxaloacetate · WorseI've been taking 500mg for a few weeks in the morning and it helps with my fatigue and brainfog but makes me extremely restless. In context ↗
Ketotifen / cromolyn sodium · WorseIt made me feel horrible for two weeks so I stopped In context ↗
DAO supplement · No changeI tried supplementing DAO and also tried H1/H2 blockers and Ketotefin/ cromolyn sodium and nothing helped the issues I have with my meals. In context ↗
Famotidine · No changeI combined Allegra bilastin with famotidin (40mg twice a day) ... nothing helped the issues I have with my meals.
Quercetin · No changeI have alot of MCAS symptoms, but don't respond to antihistamines (tried Allegra and Cetirizin) or Quercetin. In context ↗
Buteyko breathing · HelpedI like doing buteyko breathing ... It's not activating, but calms me down In context ↗
Low-dose naltrexone (LDN) · WorseI tried to start LDN for a week (0.05mg) and after a few days I started to have internal tremors In context ↗
Creatine · WorseIt made me extremely agitated In context ↗
Mestinon · WorseMestinon helped the palpitations after food, but it made my ME worse. In context ↗
Lorazepam · HelpedTook Lorazepam low dose for a month and it helps but makes me ignore my symptoms so now I'm in even worse rolling PEM than before. In context ↗
Low salicylate diet · No changeI also tried low HI diet and low salycilat diet. In context ↗
Melatonin extended release · WorseWoke up 3h later unable to sleep for the rest of the night and I had more muscle twitching. In context ↗
D-Ribose, D-Galactose · Not saidD-Ribose, D-Galactose In context ↗
AKG / Sanopal Forte · Not saidAKG / Sanopal Forte In context ↗
Organic hemp and pumpkinseed protein · Not saidI use organic hemp and pumpkinseed protein. Can't tolerate whey. In context ↗
Low-dose Abilify / aripiprazole · WorseI started 5 days ago and all these symptoms worsened significantly: Air hunger, dizziness nausea, palpitations ,pots, headache, Head pressure, migraines, Tinitus, brainzaps and Derealization... 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. Dates are when they posted. What the levels mean.

Show as a table

When	What happened	Where they were	After
2023	mild symptoms only after sportSome really mild symptoms for 2 years only after sports (2023-2024) In context ↗	Mild
December 2025	started a new job after moving country; stopped work after 3 weeksafter starting my first job I went to moderate in 3 weeks In context ↗	Moderate
February 2026	crashed after chiropractic adjustment of neck and lower backAfter that I basically went from moderate to severe. In context ↗	Severe
May 2026	declined to very severe, fully bedboundI went from mild to very severe in 5 months In context ↗	Very severe
September 2026	slowly improving on benzosI've been very severe for 5 months now and am slowly improving on benzos. In context ↗	Very severe	Lorazepam (Ativan)
October 2026	worse rolling PEM because lorazepam masked symptomsTook Lorazepam low dose for a month and it helps but makes me ignore my symptoms so now I'm in even worse rolling PEM than before. In context ↗	Very severe
October 2026	still extremely severe but slowly coming out with pacingI'm slowly coming out now. Pacing only. In context ↗	Very severe	Pacing and the energy envelope

Adverse events

Nattokinase“I am trying Nattokinase and B12 injections atm but feel like its making me worse.” In context ↗ Made symptoms worse
Vitamin B12“I am trying Nattokinase and B12 injections atm but feel like its making me worse.” In context ↗ Made symptoms worse
Meditation, yoga, breathwork“Now when I try it, it just makes me super nervous” In context ↗ Mood or psychiatric effects
Fexofenadine (Allegra), Bilastine (Blexten, Bilaxten), Cetirizine (Zyrtec), Desloratadine (Clarinex, Aerius)“I actually started taking antihistamines yesterday and after that had the worst night so far.” In context ↗ Made symptoms worse
“She made me crack in my lower back and also neck ... today I am in my worst PEM so far” In context ↗ Made symptoms worse
Cetirizine (Zyrtec)“Especially the Cetirizin causes me to be super nervous and confused.” In context ↗ Side effects
Fexofenadine (Allegra)“Allegra doesn't really do anything except make me more tired.” In context ↗ Side effects
Selenium“What made me worse: Nattokinase, antihistamines, Selenium, Vit. B1 and Folate” In context ↗ Made symptoms worse
Thiamine / benfotiamine“I tried Benfotiamin (B1) but it made me feel worse.” In context ↗ Made symptoms worse
Folate / folic acid supplements“What made me worse: Nattokinase, antihistamines, Selenium, Vit. B1 and Folate” In context ↗ Made symptoms worse
Oxaloacetate“Started with 500mg a few days ago and insomnia has been MUCH worse since then.” In context ↗ Insomnia from treatment
Low-dose naltrexone“I tried to start LDN for a week (0.05mg) and after a few days I started to have internal tremors” In context ↗ Side effects
Low-dose naltrexone“I tried LDN at 0.05mg but it made me feel incredibly agitated and made me crash.” In context ↗ Made symptoms worse
Low-dose Abilify / aripiprazole“I started 5 days ago and all these symptoms worsened significantly: Air hunger, dizziness nausea, palpitations ,pots, headache, Head pressure, migraines, Tinitus, brainzaps and Derealization...” In context ↗ Made symptoms worse
Oxaloacetate“it helps with my fatigue and brainfog but makes me extremely restless” In context ↗ Side effects
Low-dose Abilify / aripiprazole“0,05mg LDA haben mein POTS extrem verschlimmert und Brainzaps gegeben.” In context ↗ Made symptoms worse
Mestinon / pyridostigmine“Mestinon helped the palpitations after food, but it made my ME worse.” In context ↗ Made symptoms worse
Lorazepam (Ativan)“Been on lorazepam for 4 weeks and now trying to get off of it again. It's hell...” In context ↗ Withdrawal problems
Lorazepam (Ativan)“it ended in a horrible crash and also the benzos made me ignore my symptoms too much” In context ↗ Made symptoms worse
Creatine“It made me extremely agitated” In context ↗ Side effects
Melatonin“Woke up 3h later unable to sleep for the rest of the night and I had more muscle twitching.” In context ↗ Insomnia from treatment
Levothyroxine (Synthroid)“I already had a rough time adjusting to Levo when I was still healthy...” In context ↗ Side effects
Low-dose naltrexone“Couldn't tolerate even 0,05mg. Made me very nervous and gave me weird internal vibrations that lasted 6 months.” In context ↗ Side effects
Ketotifen (Zaditen)“It made me feel horrible for two weeks so I stopped” In context ↗ Made symptoms worse
Oxaloacetate“Tried it many times but it gives me unbearable stomach pain.” In context ↗ Gut side effects

Symptoms mentioned

Anxiety & low mood Brain fog Breathlessness Flu-like symptoms Gut problems Headaches & migraine Heart symptoms & palpitations Light & noise sensitivity Mast cell (MCAS) & allergies Neuropathy & tingling POTS & dysautonomia Post-exertional malaise Sleep problems Tinnitus Vision problems

Their words about their symptoms

Post-exertional malaiseI've been in rolling PEM for 7 months and can't get out In context ↗
Brain fogConfusion / brainfog is by far my worst symptom. In context ↗
POTS & dysautonomiaWhen I switch from laying to standing my heart rate goes up by 50-60bpm In context ↗
Mast cell (MCAS) & allergiesI do strongly reach to smells and chemicals. In context ↗
Sleep problemsI don't have trouble falling asleep, but wake up like every 2 hours. In context ↗
Headaches & migraineweird headaches that move around my head, very punctual In context ↗
Light & noise sensitivityextreme noise sensitivity (even birds outside are too loud) In context ↗
Breathlessnesssometimes also shortness of breath and nerve pain (chest or neck) In context ↗
Heart symptoms & palpitationsAlways with palpitations / strong heart beat, but no tachycardia. In context ↗
Neuropathy & tinglingnerve pain (chest or neck) In context ↗
Anxiety & low moodI struggle alot with anxiety and insomnia recently In context ↗
Flu-like symptomsI also have chronic swollen and painful tonsils, sinuses and mucus since this decline started In context ↗
TinnitusTinitus so loud it hurts In context ↗
Vision problemspressure on the eyes, as if they want to pop out of my head In context ↗
Gut problemsIf I eat anything (no matter if it's dry chicken breast or half a smoothie) I will feel HORRIBLE for 2-3 hours. In context ↗

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What they tried

Also tried

Their path

Adverse events

Symptoms mentioned

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