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ME/CFS Severe → somewhat betterIll 20 years before improving or writingNeeds ongoing treatment

Bedbound with ME/CFS and rolling PEM, now moderate after pacing and low-dose naltrexone

Starling 40333 on RedditLast post Jul 2026

Condition
ME/CFS
At worst
Severe (mostly bedbound)
Ill before improving or writing
20 years
Last post
Jul 2026
In their words
  • Condition: ME/CFSthen after a year of treatment not working, and noticing clear patterns of PEM, my neurologist and PCP agree I have ME/CFS In context ↗
  • At worst: SevereOctober through January was very scary, with my CFS the worst it has ever been (from mild/moderate to moderate-severe, leaving me entirely housebound and mostly bed/couchbound) In context ↗
  • Now: Somewhat betterNot in remission, but no longer severe, moderate and slowly regaining function over the past 6 months (after 3 years trending downward) In context ↗
  • Began after: a bacterial or tick-borne infectionsince my 2nd year of college, when I was sick with Lyme for months, then 6 months later, mono In context ↗
Read from 126 of their posts and comments; links to the 43 this page draws on

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Summary

She dates her illness to Lyme and then mono in college, followed by two decades of relapsing mild ME/CFS; COVID vaccines kicked her POTS into high gear. Bedbound with rolling PEM in January 2024, she got back to moderate with 30-second pacing and later low-dose naltrexone, though still unable to work.

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What they tried

What they credit

30-second pacing· Helped a lot · mainlow dose naltrexone (LDN)· Helped a lotwater, salt and waist-to-toe compression· Helped a lotwater, salt and waist-to-toe compression· Helped a lotnebivolol· Helped a lot · mainGarmin watch and chest strap· HelpedVisible with Polar strap· HelpedNAC· HelpedALA· HelpedL-theanine· Helpedmagnesium glycinate and magnesium threonate· Helpeddoxycycline· Helped

Also tried

clonidine· Helped a lotCBT-I· Helped a lotlorazepam· Helpedfludrocortisone· HelpedMestinon (pyridostigmine)· Helpedgentle recumbent physical therapy exercises· Helpedgentle movement in water· Helpedcontinuous birth control· HelpedRest Relax Recover classes· HelpedNurosym tVNS· Helpedrollator· Helpedmobility scooter· HelpedJazzy Ultralite power wheelchair· Helpedbright light exposure· Helpedprotein snack before bed· HelpedZyrtec· Helpedmeditation and breathwork· Helpedsix different sleep medications· No changepropranolol, atenolol and metoprolol· Worsepropranolol, atenolol and metoprolol· Worsepropranolol, atenolol and metoprolol· Worseivabradine (Corlanor)· WorseCOVID vaccination as treatment· Worse
Their words about each treatment
  • lorazepam · HelpedI have been able to effectively use the lowest dose of .5 mg only as needed for many years, and it's still effective. In context ↗
  • fludrocortisone · Helpedit helped my pots a lot, and that did lead to crashes In context ↗
  • Mestinon (pyridostigmine) · HelpedIt doesn't make a huge or dramatic difference in either, but it does seem to help. In context ↗
  • propranolol, atenolol and metoprolol · Worsecouldn't tolerate the first two beta blockers I tried (propranolol and atenolol) because they tanked my sleep and worsened my PEM In context ↗
  • six different sleep medications · No changeI had no success from 6 different sleep medications, both OTC and prescription In context ↗
  • clonidine · Helped a loteven four solid hours of sleep was a life-changing improvement over waking every half an hour In context ↗
  • Garmin watch and chest strap · HelpedIt is my most useful tool for pacing. In context ↗
  • Visible with Polar strap · HelpedI used Visible with the Polar strap for awhile, and it had some useful features In context ↗
  • 30-second pacing · Helped a lotI credit 30-second pacing for helping me recover from each of the periods that I've been severe/mostly bedbound. In context ↗
  • gentle recumbent physical therapy exercises · HelpedI have been able to do some brief leg and arm exercises while lying on my back without triggering PEM. In context ↗
  • gentle movement in water · HelpedGentle movement in water has been the easiest type of physical therapy for my body to tolerate In context ↗
  • continuous birth control · HelpedI just started continuous birth control after much resistance. I wish I'd started decades ago In context ↗
  • ivabradine (Corlanor) · WorseIt calmed my nervous system and lowered my HR, but made me exhausted immediately after doing anything. In context ↗
  • low dose naltrexone (LDN) · Helped a lotIt has dramatically lessened my PEM symptoms ... to the point where they're now almost non-existent. In context ↗
  • CBT-I · Helped a lotthe game changer was ... extremely strict adherence to CBT-I principles In context ↗
  • Rest Relax Recover classes · HelpedRRR has been the best investment I've made in my mental and physical health over the past year. In context ↗
  • Nurosym tVNS · HelpedI have tried both, and seen modest but noticeable improvements to my heart rate variability, resting heart rate and some symptoms of orthostatic intolerance. In context ↗
  • rollator · HelpedStarted using a rollator a few weeks ago, and it's been a game-changer for me. In context ↗
  • mobility scooter · HelpedI can't overstate how good it has been for my mental health to be able to take "walks" by myself on my mobility scooter. In context ↗
  • Jazzy Ultralite power wheelchair · Helpedthe Jazzy Ultralite has been a godsend for me In context ↗
  • bright light exposure · HelpedI started deliberately exposing myself to bright light in the morning and at the end of the day In context ↗
  • protein snack before bed · HelpedI started experimenting with a slow-burning protein snack about half an hour before bed In context ↗
  • NAC · HelpedI take NAC, ALA, L-theanine, and magnesium three times a day In context ↗
  • magnesium glycinate and magnesium threonate · Helpedmagnesium glycinate during the day and magnesium theonate at bedtime In context ↗
  • Zyrtec · HelpedNebivolol ... Zyrtec ... Floor-based, gentle PT exercises In context ↗
  • doxycycline · Helped3 weeks of doxycycline was enough to kick it In context ↗
  • meditation and breathwork · HelpedI personally find a lot of help in activities that calm my nervous system In context ↗
  • water, salt and waist-to-toe compression · Helped a lotI have to be meticulous about my water and salt intake (4 liters water and 4000mg sodium daily), as well as waist to toe compression In context ↗
  • nebivolol · Helped a lotnebivolol was the drug that finally turned things around for me In context ↗
  • COVID vaccination as treatment · WorseFor me, they did. But I also had extreme, obvious acute reactions and slow recoveries after each booster. In context ↗

Approaches: POTS medication · Amino acids and carnitine · Antibiotics · Beta-blockers · Pacing · Supplements

Their path

Very severeSevereModerateMildNear normalRecoveredonset5 y10 y15 y20 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. 2 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they wereAfter
2nd year of collegeLyme infection then mono; two decades of relapsing/remitting mild ME/CFSsince my 2nd year of college, when I was sick with Lyme for months, then 6 months later, mono In context ↗Mild
early 30sback to good health and full-time work; child at 33But I was back to good health, able to work full time again by my early 30s and had a child at age 33. In context ↗Near normal
after the pandemicCOVID vaccines kicked POTS into high gear, then a year of treatment not workingI didn't know it was all related until my COVID vaccines kicked my POTS into high gear. In context ↗Moderate
January 2024dipped into severe: bedbound, rolling PEM, entirely houseboundstarting in January I dipped into severe--bed bound, rolling PEM In context ↗Severe
February-March 202430-second pacing ended rolling PEM; moving around the house and short walksit has helped me to go from being bedbound in January back to starting to take short walks again In context ↗ModeratePacing and the energy envelope
November 2024LDN suspected to have raised baseline; 10-minute walks without PEMFor 3 days in a row, I've taken a 10-minute walk. No PEM yet. In context ↗ModerateLow-dose naltrexone
May 2025nebivolol reduced standing heart rate and calmed her systemnebivolol was the drug that finally turned things around for me In context ↗Moderate
summer 2025tick bite and new Lyme infection; months of neuropathy and painI had neuropathy and bad pain for months. In context ↗Moderate
November 2025no longer severe, slowly regaining function as POTS is better managedno longer severe, moderate and slowly regaining function over the past 6 months (after 3 years trending downward) In context ↗Moderate
July 2026symptoms better than at any time since 2023, still mostly houseboundright now my ME/CFS and POTS symptoms are better than they were at my peak last summer, better in fact than I've felt since 2023 In context ↗Moderate

Adverse events

Symptoms mentioned

Anxiety & low moodFlu-like symptomsGut problemsHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms

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