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ME/CFS Severe → somewhat betterIll 9 years before improving or writingNeeds ongoing treatment

Severe ME/CFS, once nearly bedbound, now somewhat better with pacing and POTS treatment

Sparrow 85242 on RedditLast post Oct 2026

Condition
ME/CFS
At worst
Severe (mostly bedbound)
Ill before improving or writing
9 years
Last post
Oct 2026
In their words
  • Condition: ME/CFSI have had me/cfs for seven years. In context ↗
  • At worst: SevereI’ve been severe for several years, but have leveled out at a somewhat livable moderate. In context ↗
  • Now: Somewhat betterI was severe, but with much better pacing I’m pretty solidly moderate, and have been for about 2 years. In context ↗
Read from 263 of their posts and comments; links to the 64 this page draws on

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Summary

At 23 she became suddenly ill after collapsing at a hotel bar, and became severe after trying to exercise her way better; for a year or two she was entirely severe and at times nearly bedbound. Low-dose Abilify eased her fatigue and PEM, but she gained about 60–85 lb and developed a shopping addiction and binge eating that led to hoarding. Strict pacing and POTS treatment helped, and she later lost 70 lb on Mounjaro; she fluctuates between moderate and severe and remains mostly homebound after seven years.

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What they tried

What they credit

pacing· Helped a lot · mainAbilify· Helped a lotMounjaro / tirzepatide· Helped a lot · mainpropranolol· HelpedCorlanor· Helpedketotifen· HelpedFairlife protein shakes· Helpedmoving out of a mouldy house· Helped

Also tried

Vyvanse and Adderall· HelpedVyvanse and Adderall· Helpednuvaring· Helpedlow dose naltrexone· Helpedchiropractor (soft tissue work)· Helpedtrazodone· Helpeddoxepin· Helpedmagnesium citrate· Helpedomeprazole (Prilosec)· Helpedrizatriptan· HelpedHot Tamales cinnamon candies· Helpedsleeping on her body's own schedule (4am-6pm)· HelpedApple Watch with SleepWatch app· Helpedprednisone· Helpedair squats and step-ups· Helpedrubbing alcohol wipes· Helpedsphenopalatine ganglion (SPG) block· HelpedQulipta (atogepant)· HelpedUbrelvy (ubrogepant)· HelpedBotox for migraine· Helpednutrient-focused diet· Helpedsalt, electrolytes (Liquid IV, LMNT) and compression· Helpedsalt, electrolytes (Liquid IV, LMNT) and compression· HelpedPenta water· Helpedendometriosis surgery· No changemodafinil· No changeIUD· Worsecold showers / ice cold water· Worsedelta cannabis varieties· WorseLyrica (pregabalin)· WorseCOVID vaccination as treatment· WorseCryotherapy and cold exposure· Worseworking out every day (207 days in a row)· Much worseadenoid and turbinate surgery· Much worsepaxlovid· Not saidSemaglutide (Ozempic, Wegovy)· Not said
Their words about each treatment
  • Vyvanse and Adderall · HelpedI lost the vast majority of the benefit from stimulants after I got ME/cfs, but they manage to help me feel less miserable. In context ↗
  • nuvaring · HelpedI do nuvaring and put one in/take one out at the same time every 3 weeks because of horrible periods, and now I don’t get them at all. Much better quality of life. In context ↗
  • working out every day (207 days in a row) · Much worseWorked out like crazy trying to get better, and ended up being severe because of it. In context ↗
  • propranolol · HelpedI was on Propranolol for a long time at 40mg doses and it helped, but it later got bumped up to 120mg to treat migraines In context ↗
  • pacing · Helped a lotPacing hasn’t cured me, and it won’t, but it makes things way better. In context ↗
  • low dose naltrexone · Helpedall LDN does for me is reduce chronic pain. That’s definitely helpful In context ↗
  • chiropractor (soft tissue work) · HelpedI see a chiropractor weekly and it’s majorly helped reduce that specific type of pain. In context ↗
  • adenoid and turbinate surgery · Much worseIt’s horrific. I wish I’d never had the surgery. In context ↗
  • Abilify · Helped a lotAbilify definitely gave me part of my life back and relieved quite a bit of suffering. In context ↗
  • trazodone · HelpedTrazodone 200mg and Doxepin 10mg, along with magnesium citrate, is what finally helped me sleep after about 2 years into having me/cfs. In context ↗
  • doxepin · HelpedNeither one of them really works for me without the other. In context ↗
  • magnesium citrate · HelpedCan’t recommend the magnesium citrate enough, and I normally won’t even take supplements. In context ↗
  • IUD · WorseBut my experience has been horrendous. In context ↗
  • Corlanor · HelpedIvabradine helped me the most, but it didn’t treat the ME. definitely helped the pots symptoms In context ↗
  • Mounjaro / tirzepatide · Helped a lotI think overall, tirzepatide made my overall function improve more than anything else In context ↗
  • ketotifen · HelpedI also take Ketotifen, it helps some. In context ↗
  • omeprazole (Prilosec) · HelpedSo I started taking 2 omeprazol daily, and it did dramatically help. In context ↗
  • rizatriptan · HelpedThe emergency migraine medicine she gave me (which I’ve used successfully when I felt the symptoms coming on even without headache) is Rizatriptan. In context ↗
  • cold showers / ice cold water · Worseif I step into a cold shower, it shocks my body and my nervous system kind of goes into overdrive…in a bad way. In context ↗
  • paxlovid · Not saidI started paxlovid pretty quickly, and was still testing positive at the 10 day mark In context ↗
  • Hot Tamales cinnamon candies · Helpedso I ordered a ton of Hot Tamales candies. They really did help! In context ↗
  • delta cannabis varieties · Worsehave tried a large variety of the different delta varieties. They actually make it worse In context ↗
  • sleeping on her body's own schedule (4am-6pm) · HelpedI tried to sleep more normal hours for about 6 years but the last 2.5 have been much better just sleeping when my body says to In context ↗
  • Apple Watch with SleepWatch app · HelpedI use the app SleepWatch and that’s how I can track my HR trends, oxygen, restlessness, HRV, etc. In context ↗
  • prednisone · HelpedIt’s actually been effective at breaking the migraine too In context ↗
  • Fairlife protein shakes · HelpedI have 2 protein shakes every day, and I’ve been able to stay more stable at moderate/severe instead of falling into severe pretty often. In context ↗
  • air squats and step-ups · Helpedany time I feel like I can handle a couple of air squats…I do them In context ↗
  • rubbing alcohol wipes · HelpedThey really help kind of pull my senses away from the triggers, especially smells, and can actually prevent me from vomiting. In context ↗
  • sphenopalatine ganglion (SPG) block · HelpedI have gotten a A sphenopalatine ganglion (SPG) block. Helped a bit with migraine pain so far but I still have a few more scheduled. In context ↗
  • Qulipta (atogepant) · HelpedI get Botox, increased propranolol dose, qulipta daily, and ubrelvy and rizatriptan for rescue In context ↗
  • endometriosis surgery · No changeI don’t feel like this procedure set my ME back, which has blown me away. In context ↗
  • nutrient-focused diet · HelpedThe diet that has worked best for me is to ensure I’m trying to eat food that has nutrients. In context ↗
  • Lyrica (pregabalin) · WorseHad this issue with Lyrica but I’m glad it’s over with In context ↗
  • modafinil · No changeI tried adding 200mg modafinil and it didn’t do anything In context ↗
  • salt, electrolytes (Liquid IV, LMNT) and compression · Helpeddrinking lots of salt with liquid IV and LMNT has helped me In context ↗
  • Penta water · HelpedI drink Penta water, it’s really expensive but the only one I’ve found that doesn’t make me vomit when I’m in a bad flare In context ↗
  • moving out of a mouldy house · HelpedI moved into a 90+ years old house of a family member, where you could literally see black mold, and I definitely got worse. But I also improved after I moved out after a year there. In context ↗
  • COVID vaccination as treatment · Worsethird was the sickest I’ve been in a few years In context ↗
  • Cryotherapy and cold exposure · Worseit triggers fight or flight (which gives me the illusion of feeling better but results in crashing hard) In context ↗
  • Semaglutide (Ozempic, Wegovy) · Not saidI tried Ozempic first and it gave me really bad side effects In context ↗

Approaches: GLP-1 drugs · POTS medication · Antihistamines & MCAS · Beta-blockers · Mould avoidance · Other drugs and medicines · Pacing · Supplements

Their path

Very severeSevereModerateMildNear normalRecoveredonset2 y4 y6 y8 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 1, 2017sudden onset after blacking out at a bar; became instantly illI got sick at midnight on 12/31/16 or 1/1/17 ... I could hardly walk In context ↗Moderate
October 2017after 207 days of working out and still working, could barely care for herself and left her jobI can’t cook for myself anymore. I can’t do my laundry. I hardly brush my teeth. In context ↗Severe
2018stopped all work and exercise and felt worse for about a yearWhen I finally stopped everything and rested completely, it felt like I got worse for like a year. In context ↗Severe
July 2019low-dose Abilify reduced fatigue and PEM; able to do physical therapyLess crippling fatigue, less and shorter PEM, able to do more activities. In context ↗SevereLow-dose Abilify / aripiprazole
end of 2022onset of vestibular migraines with vertigo, vomiting and vision problemsI started getting vestibular migraines at the end of 2022 and it was awful. In context ↗Severe
August 2023propranolol raised for vestibular migraine; back to ME baselineSo the good news is I’m back to my me/cfs baseline most of the time In context ↗ModeratePropranolol (Inderal)
January 2024settled at moderate with strict pacing; can go out every couple of weeksI went from moderate-severe/sometimes full blown severe to moderate. In context ↗ModeratePacing and the energy envelope
December 2025tirzepatide eased the crushing weight of the fatigue; steadier at moderateI’m also able to move around better than I was (even before the weight gain). In context ↗ModerateTirzepatide (Mounjaro, Zepbound)
October 2026still moderate and largely homebound, dependent on stimulants to functionI rely on my stimulants for survival at this point In context ↗Moderate

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogFlu-like symptomsGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitusVision problems
Their words about their symptoms
  • Post-exertional malaiseWhenever I overdo things, my body goes into the adrenaline survival mode, I can’t sleep, and it’s just a different type of misery preceding the actual crash. In context ↗
  • Brain fogmy mind was just stuck in what I described as wet concrete In context ↗
  • POTS & dysautonomiaDizziness is awful, but mine mainly comes from my dysautonomia In context ↗
  • Sleep problemsa constant battle with both hypersomnia and insomnia In context ↗
  • Pain & fibromyalgiaJoint aches and pains are as well, and additional pains pop up at all times. In context ↗
  • Headaches & migraineI get several vestibular migraines every week. In context ↗
  • Gut problemsMy IBS and vestibular migraines, as well as POTS and chronic pain conditions are also constant. In context ↗
  • Light & noise sensitivityVisual and aural stimulation is always difficult. In context ↗
  • Heart symptoms & palpitationsEven on 120mg propranolol my heart rate was rarely below 100 In context ↗
  • Muscle weaknessI can’t push more than about 5 items of clothing down a clothes rack before my arm is burning and basically maxed out to failure. In context ↗
  • Anxiety & low moodI had Major Depressive Disorder that was deemed treatment resistant for over 12 years. In context ↗
  • Flu-like symptomsI always feel like I have the flu, a concussion, a hangover, and a virus all together In context ↗
  • TinnitusLots of ears ringing, dizziness, etc. In context ↗
  • Temperature regulationI can’t regulate body temperature In context ↗
  • Vision problemsmy vision becomes really abnormal/disturbed In context ↗
  • Hair lossI used to have unbelievably thick, long, wavy hair, but I lost a ton of it when I got sick. In context ↗

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