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ME/CFS Severe → much betterIll 14 years before improving or writing

Severe ME/CFS with POTS, sleeping 20 hours a day, now much better

Lake 66747 on RedditLast post Sep 2026

Condition
ME/CFS
At worst
Severe (mostly bedbound)
Ill before improving or writing
14 years
Last post
Sep 2026
In their words
  • Condition: ME/CFSI've had CFS/ME for many years (I think since I was about 16 and I'm 30 now.) In context ↗
  • At worst: SevereI had covid two years ago and it brought my baseline down from mild to severe In context ↗
  • Now: Much betterI have mostly recovered now but it did take over a year and I'm not really back to where I was prior. In context ↗
  • Began after: stress or burnoutI started experiencing fatigue after getting PTSD when I was 13
Read from 71 of their posts and comments; links to the 34 this page draws on

Request to remove this story

Summary

Lake 66747, in the UK, dates fatigue to PTSD at 13 and CFS symptoms to about 16. COVID around 2023 took the baseline from mild to severe and gave them POTS; they slept 20 hours a day and worked about three hours. Pacing, multivitamins, a GLP-1 and mobility aids followed; by 2026 they worked 12 hours a week and napped the rest of the day, mostly recovered but not back to where they were before.

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What they tried

What they credit

pacing· Helped · mainVisible· Helped

Also tried

Alyve vitamins· HelpedT· HelpedMounjaro· Helpedrollator· Helpedcalorie counting· Helpedfexofenadine· HelpedPhizz· Helpedivabradine· Helped · wore offamitriptyline· No changeonline course for insomnia· No changesteroid treatment· Worsefluoxetine· Not saidCBD· Not saidFin· Not saidAlbuterol / salbutamol (Ventolin)· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
  • amitriptyline · No changeI was given amitriptyline on a tiny dose and it did absolutely nothing. In context ↗
  • Alyve vitamins · HelpedI do find that it helps when I remember to take them consistently. In context ↗
  • fluoxetine · Not saidI was told that it was just my depression and that I needed to keep taking my fluoxetine. In context ↗
  • online course for insomnia · No changeI was referred to an online course for insomnia ... It was absolutely useless In context ↗
  • pacing · HelpedFiguring things out on my own and learning how to pace has been the way forward for me. In context ↗
  • Visible · HelpedVisible has been invaluable to me. ... it helps me to pace a lot more.
  • T · HelpedI've been on T for 4 years. ... I have seen an improvement in my mental health In context ↗
  • Mounjaro · HelpedI do think I've seen a reduction in headaches and possibly an increase in energy. In context ↗
  • rollator · HelpedMy rollator definitely helps more with my energy levels because I can sit down whenever I need to. In context ↗
  • steroid treatment · WorseI have to go on steroid treatment for my asthma and my chronic fatigue goes wild. In context ↗
  • calorie counting · HelpedI dropped my cals even more to 1400-1500ish, and I've been losing about 1lb a week. In context ↗
  • CBD · Not saidI decided to come off of my SSRI to try CBD In context ↗
  • fexofenadine · Helpedit just helps my hayfever which gives me sinus headaches ... So less headaches in general at least. In context ↗
  • Fin · Not saidStarted on Fin in November last year and haven't had any side effects. In context ↗
  • Phizz · HelpedI use Phizz at the moment and find they really help bring my standing HR down! In context ↗
  • ivabradine · HelpedIt made me exhausted for the first couple of weeks but then my body adapted to it. It also completely got rid of my anxiety but sadly that didn't last. In context ↗
  • Albuterol / salbutamol (Ventolin) · Not saidI had the shakes from basically overdosing my inhaler In context ↗
  • COVID vaccination as treatment · Not saidCovid shot, I had an aching arm and a background headache for about 2 days. In context ↗

Approaches: Pacing

Their path

Very severeSevereModerateMildNear normalRecovered12 y12.5 y13 y13.5 y14 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. The chart starts 12 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they were
age 16fatigue began after PTSD at 13; CFS symptoms from about 16I've had CFS/ME for many years (I think since I was about 16 and I'm 30 now.) In context ↗Not stated
2023-2024COVID; baseline fell from mild to severe, POTS, sleeping 20 hours a dayit brought my baseline down from mild to severe ... I was sleeping 20 hours a day at that pointSevere
December 2024slowly getting back towards their usual fatigue levelit's been slowly getting back to my normal fatigue level recently In context ↗Moderate
March 2025self-rated moderate; about 4 hours a day out of bedI'm usually only *not* laying in bed for about 4 hours each day. In context ↗Moderate
April 2025crashed after a dust-triggered asthma attack; resting HR 120my resting HR went up to 120 and it's taking sooo long to come down again In context ↗Moderate
August 2025moved from self-rated 8 to 4; about 2,000 steps a dayI was an 8 for a long time but now I'm a 4. In context ↗Moderate
August 2025dropped back to 8 for a few days after a benefits announcementI go back down to an 8 for a few days. Last time it happened was when my government announced that they'd make benefits harder to get In context ↗Moderate
November 2025flu; back to sleeping all dayI had flu last week and I'm back to sleeping all day again. In context ↗Moderate
June 2026mostly recovered but not back to pre-COVID baseline; working 12 hours a weekI have mostly recovered now but it did take over a year and I'm not really back to where I was prior. In context ↗Moderate

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitus
Their words about their symptoms
  • Post-exertional malaiseA six hour outing means that I need one or two days of full bed rest. In context ↗
  • Brain fogMy brain doesn't work properly. I forget to take my meds or drink water. In context ↗
  • POTS & dysautonomiaas well as giving me POTS In context ↗
  • Mast cell (MCAS) & allergiesI suffer from hayfever really badly In context ↗
  • Sleep problemsI sleep at least 12 hours every night In context ↗
  • Pain & fibromyalgiaOtherwise I wake up with neck and ear pain. In context ↗
  • Headaches & migraineI also get migraines a lottt especially when I'm stressed and tired. In context ↗
  • Light & noise sensitivityI find it very overwhelming sensory-wise In context ↗
  • Heart symptoms & palpitationsmy resting HR went up to 120 and it's taking sooo long to come down again In context ↗
  • Muscle weaknessmy arms are weaker than my legs In context ↗
  • Anxiety & low moodsocial anxiety and phone anxiety are big roadblocks for me In context ↗
  • Flu-like symptomsI usually wake up with a slightly sore throat. In context ↗
  • TinnitusThe extra sodium makes my pulsatile tinnitus really loud In context ↗

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