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ME/CFS Severe → much betterIll 7 years before improving or writingNeeds ongoing treatment

Bedbound with ME/CFS, now much better with pacing and LDN

Kestrel 66285 on RedditLast post Jun 2026

Condition
ME/CFS
At worst
Severe (mostly bedbound)
Ill before improving or writing
7 years
Last post
Jun 2026
In their words
  • Condition: ME/CFSI have diagnosed ME/CFS In context ↗
  • At worst: SevereI became severe and bed bound. In context ↗
  • Now: Much betterFor now I’m saying I’m mild (I was moderate to severe before). In context ↗
  • Began after: another virusThen I caught a virus at the beginning of 2019 In context ↗
Read from 81 of their posts and comments; links to the 40 this page draws on

Request to remove this story

Summary

A UK user who developed mild ME/CFS in 2019 after repeated viruses became severe and bedbound after a second Pfizer COVID vaccine in 2021, later dropping out of school. Pacing, leaving a stressful religion, LDN, diet changes and medication for acid reflux brought them to moderate with good and bad stretches; by 2025 they could walk around their house but couldn't leave without a crash.

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What they tried

What they credit

pacing· Helped a lot · mainLDN· Helped a lot · mainfamotidine· Helpedgently tense then relax different muscle group· Helped

Also tried

self reflection and leaving religion· Helped a lotneck brace (Aspen Vista cervical collar)· Helped a lotpulse oximeter and temperature monitoring· Helpedwheelchair· Helpedibuprofen· Helpedhot baths· Helpedlymphatic drainage massage· Helpedice· Helpeddiet changes· Helpedlow histamine diet· Helpedpropanadol· Helpedincreasing water and salt intake and compression garments· Helpedincreasing water and salt intake and compression garments· Helpedsalicylic acid shampoo· HelpedKetoconazole shampoo· Helpedvitamin D· No changeputting all my energy into being holy· No changeCBT· Worsephysical therapy and activity plan· Worsemeditation· WorseCOVID vaccination as treatment· WorseB12 supplements· Not saidiron supplements· Not said
Their words about each treatment
  • CBT · WorseBoth CBT and PT made me worse. In context ↗
  • physical therapy and activity plan · WorseI did as they said. It made me worse and the health psychologists kept trying to blame me. In context ↗
  • pacing · Helped a lotPacing, learning my bodies signals for when I need to rest, making sure my nutritional needs are met and taking vitamin d which I was deficient in all helped. In context ↗
  • vitamin D · No changeI was told to take 3000 IU daily. Personally I didn’t notice an improvement to how I was feeling In context ↗
  • famotidine · HelpedI find I feel a little better when I take it. In context ↗
  • pulse oximeter and temperature monitoring · HelpedThis helped me know if I had an episode coming on. In context ↗
  • wheelchair · HelpedMy wheelchair has allowed me to leave my house and lessen PEM. In context ↗
  • ibuprofen · HelpedFor me ibuprofen and hot baths help but don’t make it go away. In context ↗
  • gently tense then relax different muscle group · HelpedI've become stronger but it hasn't caused PEM like the exercises I used to do. In context ↗
  • LDN · Helped a lotI've been on LDN for a week now and it's been incredible! In context ↗
  • lymphatic drainage massage · HelpedIce, LDN, lymphatic drainage massage and most of all, pacing have helped me with this. In context ↗
  • ice · HelpedI also find putting ice on spots that feel pressure or weirdly hot can give some relief. In context ↗
  • putting all my energy into being holy · No changeI put all my energy into being holy in hopes of a miracle cure and that was when I was at my most severe. In context ↗
  • self reflection and leaving religion · Helped a lotAfter I deconstructed, and no longer spent so much of my energy on religion and worrying about sin, I pretty rapidly went from severe to moderate. In context ↗
  • B12 supplements · Not saidI was B12 and iron deficient and wanted to see if the supplements and dietary changes fixed it. In context ↗
  • diet changes · HelpedI managed to lessen these symptoms with medication, diet changes and for the loss of appetite I forced myself to eat. In context ↗
  • low histamine diet · HelpedI’ve started a low histamine diet because I suspect MCAS and every food I love is high in histamine. But the diet is making me feel better. In context ↗
  • propanadol · HelpedPOTS medication has been a game changer for me in terms of being able to do small tasks without a crazy high heart rate. In context ↗
  • increasing water and salt intake and compression garments · HelpedPropanadol, increasing water and salt intake and compression garments. In context ↗
  • neck brace (Aspen Vista cervical collar) · Helped a lotI did a neck brace trail and my ME/CFS was completely gone while wearing the brace. In context ↗
  • meditation · WorseAnd meditation just makes me realise how much pain I’m in. In context ↗
  • salicylic acid shampoo · HelpedI first use a salicylic acid shampoo and let it sit on my scalp while I wash half my body. In context ↗
  • Ketoconazole shampoo · HelpedI have dandruff that causes an itchy scalp but I’ve found double shampooing has decreased that a lot In context ↗
  • COVID vaccination as treatment · WorseThe second one made me go from mild to severe but the third one I had no reaction to. In context ↗

Approaches: H2 blockers · Mind-body practices · Pacing

Their path

Very severeSevereModerateMildNear normalRecoveredonset12 mo2 y3 y4 y5 y6 y7 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
beginning of 2019virus, then a bad cold; mild ME/CFSThen I caught a virus at the beginning of 2019 In context ↗Mild
summer 2021second Pfizer COVID vaccine; went from mild to severeThen I got the second shot and I could barely get out of bed. In context ↗Severe
2022bedbound, dropped out of school, diagnosed with ME/CFS at 16I became severe and bed bound. In context ↗Severe
2023paced and left religion; went from severe to moderateI pretty rapidly went from severe to moderate. In context ↗ModeratePacing and the energy envelope
2023fell back to severe during the NHS pacing-up/GET programmeby the time I dropped out of the program I had fallen back to severe In context ↗Severe
March 2024cognitively much better; could follow a TV show and hold conversationsToday I am much better, I just finished an intense, plot driven TV show. In context ↗ModeratePacing and the energy envelope
March 2024crashed after visiting a college and meeting a careers adviserabout a month ago I pushed it too far by looking around a college and meeting with a careers advisor who was not helpful. I am still recovering from that. In context ↗Severe
June 2024back to moderate; spends 70-80% of the time in bedI am now moderate. I still spend 70-80 percent of my time in bed. In context ↗Moderate
October 2024dog died; ME/CFS got worseUnfortunately my ME/CFS has gotten worse since his death. In context ↗Moderate
February 2025started LDN; good day after good day, better memoryI've been on LDN for a week now and it's been incredible! In context ↗ModerateLow-dose naltrexone
August 2025crashed after walking a lot searching for a runaway dogAs you can imagine I’m utterly exhausted. It seems I feel worse each day instead of better. In context ↗Moderate
September 2025low-histamine diet eased suspected MCAS reactionsBut the diet is making me feel better. In context ↗ModerateLow-histamine diet
December 2025POTS medication made small tasks possible without a racing heartPOTS medication has been a game changer for me in terms of being able to do small tasks without a crazy high heart rate. In context ↗ModeratePropranolol (Inderal)
February 2026worse again on the worse end of moderate; comorbidities dragging them downthen worse again (on the worse end of moderate) In context ↗Moderate
February 2026fitted neck brace for diagnosed CCI; ME/CFS symptoms gone while wearing itmy ME/CFS was completely gone while wearing the brace. In context ↗Mild
June 2026describes themselves as mild nowFor now I’m saying I’m mild (I was moderate to severe before). In context ↗Mild

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
  • Post-exertional malaisewhen I finally feel better I still have to lay in bed all day otherwise I’ll cause PEM In context ↗
  • Brain fogeither that’s my brain fog of there are typos In context ↗
  • POTS & dysautonomiaI have ME, POTS and hEDS as well as all the symptoms of MCAS In context ↗
  • Mast cell (MCAS) & allergiesI notice when I eat something high in histamine I get itchy, and skin the food touched stings, my tongue swells up and I get awful stomach pain. In context ↗
  • Sleep problemsthe more exhausted I am the harder it is to fall asleep In context ↗
  • Pain & fibromyalgiaI walked for 5 minutes and now I have to be in excruciating pain for a week. In context ↗
  • Headaches & migraineI have a history of migraines but these do not feel the same. In context ↗
  • Gut problemsEverything I ate or drank including water hurt my stomach. This hasn’t gone away but is less severe and I’m medicated for it. In context ↗
  • Light & noise sensitivityHearing a lawnmower or similar background noise. I’ll feel awful while it’s happening In context ↗
  • BreathlessnessI’m out of breath and all I’ve done is lay in bed. In context ↗
  • Heart symptoms & palpitationsI noticed that the first symptom I would get was a racing heart In context ↗
  • Muscle weaknessmy limbs get very weak and fine motor skills are gone In context ↗
  • Anxiety & low moodI really struggle with bad anxiety and depression In context ↗
  • Flu-like symptomsMy lymph nodes are painfully swollen. In context ↗
  • Temperature regulationI also get hot to the touch pretty frequently in all sorts of spots but particularly my neck. In context ↗
  • Vision problemsI’m seeing everything in pink In context ↗

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