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ME/CFS Very severe → relapsedIll 7 years before improving or writingNeeds ongoing treatment

Very severe ME/CFS and bedbound, pacing helped to moderate then a relapse

Dusk 27030 on RedditLast post Aug 2025

Condition
ME/CFS
At worst
Very severe (bedbound, unable to do basic care)
Ill before improving or writing
7 years
Last post
Aug 2025
In their words
  • Condition: ME/CFSI had mild ME/CFS for 5 years. Then I got Covid, and have since been severe, bedbound for the past 10+ months. In context ↗
  • At worst: Very severeWhen I was extremely severe, I was essentially paralyzed, could only sometimes speak at a whisper, was in a nursing home with people feeding me ensure and changing my diaper In context ↗
  • Now: RelapsedI got back to moderate. Started working from home part time. I was so proud of myself. Working sent me into a major crash. Back to Severe I went. In context ↗
Read from 168 of their posts and comments; links to the 63 this page draws on

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Summary

They dated their ME/CFS to the end of 2017, when they were mild; a physical job pushed them to moderate. COVID in 2022 made them severe and Paxlovid took them to very severe, near-paralysis, with a two-month hospital and nursing home stay. Pacing brought them back to moderate over about 18 months, but remote part-time work in 2024 crashed them, and by August 2025 they were very severe and bedbound. Most drugs and supplements made them worse.

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What they tried

What they credit

pacing and avoiding PEM· Helped a lot · mainCHOP Modified Dallas protocol of GET· Helpedcoffee· Helped · wore off

Also tried

gabapentin· Helped a lotIV Ativan· Helpedfludrocortisone· HelpedCoQ10· Helped · wore offmelatonin· Helpedibuprofen· Helpedmagnesium citrate· Helpedcane· Helpedadjustable bed (bed raising)· HelpedMiralax· Helpedquieting the mind ("The Void")· Helpedelimination diet (starting with gluten)· Helpedelimination diet (starting with gluten)· Helpedvitamin D and increased sun exposure· Helpeddoxycycline· No changenattokinase· No changePerrin technique home exercises· No changeIV saline· No changeGarmin fitness tracker· No changeH1 antihistamines· No changeH2 blockers· No changeCOVID vaccines (Novavax, Pfizer, Moderna)· No changeaggressive rest· No changeTrazodone· Worseketo diet· Worseashwagandha· Worsenicotine patches· WorseB12 injections· Worsemidodrine· WorseCymbalta (duloxetine)· Worsean antidepressant (hospital psychiatric consult)· WorseModafinil· Worsesodium butyrate· Worsephysiotherapy· Much worsePaxlovid· Much worsemetoprolol· Much worseConcerta (methylphenidate)· Much worsehome occupational therapy· Much worseelectrolyte pill (sodium and potassium), previously Nuun· Not saidprednisone· Not saidHPV vaccine· Not saidprobiotics· Not said
Their words about each treatment
  • doxycycline · No changeI did take doxycycline early on when I first got sick with ME/CFS. It didn't help me. In context ↗
  • CHOP Modified Dallas protocol of GET · HelpedI used the CHOP Modified Dallas protocol of GET, and it improved me up to a point. In context ↗
  • physiotherapy · Much worseThat contributed to horrible PEM and a severe crash, one that severely lowered my functional baseline. In context ↗
  • IV Ativan · HelpedI was given IV Ativan once in the hospital, and it helped. In context ↗
  • Paxlovid · Much worseTaking Paxlovid took me from severe to very severe in a matter of days. In context ↗
  • pacing and avoiding PEM · Helped a lotI had a major improvement from severe to moderate a while ago that was gradual over about a year and a half, just pacing. In context ↗
  • fludrocortisone · HelpedI started fludrocortisone 0.1 mg a day when I was at my worst. It is one of the few meds that I can tolerate. In context ↗
  • CoQ10 · HelpedI was on it for a couple of years, and it took the edge off of my fatigue and malaise. It stopped working after that. In context ↗
  • Trazodone · WorseFirst Trazodone, which was slow crashes over a prolonged period. In context ↗
  • keto diet · WorseI tried keto for a week and just couldn't do it, I felt so sick. In context ↗
  • ashwagandha · WorseThen I switched to ashwagandha, which made me crash hard and fast. In context ↗
  • melatonin · HelpedTurns out I need 1mg melatonin. In context ↗
  • nicotine patches · WorseUnfortunately, it did not work for me (made me nauseated and more fatigued, but improved fairly quickly once I stopped). In context ↗
  • nattokinase · No changeI bought an expensive brand from a MD's office. It did nothing for me. In context ↗
  • metoprolol · Much worseI had a relatively recent severe crash after starting a low dose of metoprolol. In context ↗
  • Concerta (methylphenidate) · Much worseI crashed severely from a single dose. I didn't over-exert, it just wouldn't let me rest. In context ↗
  • B12 injections · WorseI tried them for a bit. They gave me false energy that triggered a crash. In context ↗
  • gabapentin · Helped a lotI take a low dose of gabapentin, 100 mg twice a day. It has been a game changer for my chronic pain. In context ↗
  • ibuprofen · HelpedFor me, I use ibuprofen for headache and muscle pain. In context ↗
  • midodrine · WorseMidodrine gave me headaches and blurry vision. Also felt over-stimulating. In context ↗
  • Cymbalta (duloxetine) · WorseI was started on Cymbalta while severe, and it caused tachycardia, elevated liver enzymes, and a bad crash. In context ↗
  • an antidepressant (hospital psychiatric consult) · Worsestarted me on an antidepressant (that was unnecessary and ended up hurting me) In context ↗
  • Modafinil · WorseModafenil - Crash In context ↗
  • Perrin technique home exercises · No changeIt wasn't helping myME/CFS symptoms either, so I stopped. In context ↗
  • IV saline · No changeI tried this and it didn't help me. In context ↗
  • electrolyte pill (sodium and potassium), previously Nuun · Not saidI take an electrolyte pill twice a day that has sodium and potassium in it. In context ↗
  • magnesium citrate · HelpedI take mag citrate (100 mg twice a day). It has significantly decreased my menstrual and muscle cramps. In context ↗
  • Garmin fitness tracker · No changeIt has not helped me avoid PEM in any way. In context ↗
  • cane · HelpedI use a cane, and it helps a lot. It helps me use less energy while I walk. In context ↗
  • adjustable bed (bed raising) · HelpedI definitely noticed a decrease in my thirst and peeing after starting to use that. In context ↗
  • Miralax · HelpedAnother vote for Miralax. It is safe to take daily for long periods of time. In context ↗
  • H1 antihistamines · No changeAntihistamines (H1/H2 blockers) do nothing for me. In context ↗
  • prednisone · Not saidPrednisone was not one one of them. In context ↗
  • coffee · HelpedCoffee helped me a lot when I was mild and moderate. In context ↗
  • COVID vaccines (Novavax, Pfizer, Moderna) · No changeI had the Novavax awhile ago. Barely any side effects, and much more tolerable than the Pfizer or Moderna RNA vaccines. It didn't make me better though. In context ↗
  • HPV vaccine · Not saidI got it and had no problems In context ↗
  • quieting the mind ("The Void") · Helpedyou can quiet your mind and think about less strenuous things In context ↗
  • elimination diet (starting with gluten) · HelpedCutting out gluten made a significant improvement for me as far as gut symptoms (mostly pain and bloating) as well as brain fog. In context ↗
  • probiotics · Not saidI use probiotics intermittently. In context ↗
  • vitamin D and increased sun exposure · HelpedMy experience is that it can help a bit with energy and feeling less ill, but it's not a miracle cure. In context ↗
  • sodium butyrate · WorseSodium Butyrate - tachycardia & anxiety In context ↗
  • aggressive rest · No changeI don't think that works. It has never helped me. In context ↗
  • home occupational therapy · Much worseI had a home occupational therapist who didn't understand my condition and crashed me. In context ↗

Approaches: Other drugs and medicines · Pacing

Their path

Very severeSevereModerateMildNear normalRecoveredonset2 y4 y6 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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they wereAfter
end of 2017ME/CFS onset, mildI got bobblehead shortly after developing ME/CFS at the end of 2017. ... I was mild when I first got it 7 years ago.Mild
—dropped from mild to moderate from a physical jobProgressed to moderate due to working. In context ↗Moderate
2022COVID took her from mild to severe over a few weeksGetting Covid took me from mild to severe over the course of a few weeks. In context ↗Severe
2022Paxlovid crash to very severe, near-paralysis; hospital then nursing homeTaking Paxlovid took me from severe to very severe in a matter of days. In context ↗Very severe
early 2024reached moderate after about 18 months of avoiding PEM; returned to remote part-time workOnce I got back home, I was able to avoid PEM by hiring a maid to come biweekly and delegating physical tasks to my husband and kids. ... I got to moderate after a year and a half. In context ↗ModeratePacing and the energy envelope
June 2024crashed after returning to remote part-time work; nursing home monthCrashed due to work related mental over exertion in June. In context ↗Severe
March 2025slight baseline rise; could walk to the attached bathroom with a rolling walkerMy baseline seemed to be improving slightly in March ... I have begun to be able to walk to the bathroom attached to my bedroom using a rolling walker.Severe
April 2025crashed for seemingly no reason through Aprilbut then I crashed for seemingly no reason throughout April, and every day is torture In context ↗Severe
August 2025very severe and bedboundNow I'm very severe and bedbound. In context ↗Very severe

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogGut problemsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
  • Post-exertional malaiseI've been in PEM for going on 2 months now. In context ↗
  • Brain fogCutting out gluten made a significant improvement for me as far as gut symptoms (mostly pain and bloating) as well as brain fog. In context ↗
  • Sleep problemsI get pretty bad insomnia with PEM. In context ↗
  • Pain & fibromyalgiaIt has been a game changer for my chronic pain. In context ↗
  • Gut problemsI have fat intolerance. Anything greasy makes me feel sick, painful, and bloated. In context ↗
  • Light & noise sensitivityToo much light hurts my eyes, and I have to squint or close them. In context ↗
  • POTS & dysautonomiaFludrocortisone helps my low blood pressure and prevents syncope/presyncope for me. In context ↗
  • Neuropathy & tinglingmy nerve pain? Nothing touched it until I tried gabapentin In context ↗
  • Muscle weaknessI was essentially paralyzed, could only sometimes speak at a whisper In context ↗
  • Anxiety & low moodI definitely have some PTSD from when I was extremely severe In context ↗

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