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ME/CFS Very severe → somewhat betterIll 12 years before improving or writingNeeds ongoing treatment

Unable to move with ME/CFS for three years, now somewhat better with pacing

Kite 18706 on RedditLast post May 2026

Condition
ME/CFS
At worst
Very severe (bedbound, unable to do basic care)
Ill before improving or writing
12 years
Last post
May 2026
In their words
  • Condition: ME/CFSI've had M.E. since I was 13 (February 2014) In context ↗
  • At worst: Very severeI started as very severe, I couldn't move most of the time In context ↗
  • Now: Somewhat betterI started as very severe, I couldn't move most of the time ... I finally came to terms with the fact I am severe again
  • Began after: another virusJanuary 2014 I got chicken pox, February I got a chronic headache and went downhill very fast.
Read from 102 of their posts and comments; links to the 46 this page draws on

Request to remove this story

Summary

Kite 18706 fell ill in February 2014 at 13 after chicken pox and a headache that never left, and was very severe, unable to move, for about three years. Learning to pace from about 2019 brought her to a steady moderate level; she used a cane from 2019. Co-codamol and Prozac helped her function, while nortriptyline in 2025 caused her longest crash. By February 2026 she was severe again, almost bedbound, and had got a wheelchair.

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What they tried

What they credit

co-codamol· Helped a lot · mainpacing· Helped a lot · mainvegetarian diet· HelpedProzac (fluoxetine)· Helpeddepo provera injection· Helpedmoving out and living alone· HelpedVisible· Helpedelectrolytes· Helped

Also tried

cane· Helpedendometriosis excision· Helpedaccessible bathroom with built-in shower chair· Helpedknee supports· Helpedloop earplugs· Helpedcomplan· Helpeddiphenhydramine / antihistamines· Helpedcalorie deficit· Helpedintermittent fasting· Helpedzoladex· Helpedwheelchair· Helpedamitriptyline· No changehomeopathy· No changecombi pill/mini pill· No changecombi pill/mini pill· No changemelatonin· No changenicotine patch· No changesertraline· WorseEating meat (including red meat)· Worsetrying to "exercise it away"· Much worsenortriptyline· Much worsemultivitamins· Not saidchronic illness psychologist· Not saidshort walks and exercise bike· Not said
Their words about each treatment
  • amitriptyline · No changeI was on amitriptyline for my headaches when my M.E. started (11 years ago) but it did absolutely nothing. In context ↗
  • vegetarian diet · HelpedI couldn't function when I ate meat. I literally couldn't walk. Went veggie and my health improved. In context ↗
  • trying to "exercise it away" · Much worseIt caused me to go from mild to severe in a few months. In context ↗
  • homeopathy · No changeHomeopathy does f all for M.E. trust me. My mam dumped alllll of that on me, still sick 12 years later In context ↗
  • combi pill/mini pill · No changeI didn't really see a huge difference with the combi pill/mini pill, but due to other risks I had to stop In context ↗
  • sertraline · WorseI also got worse on sertraline. In context ↗
  • Prozac (fluoxetine) · HelpedAlso Prozac, I haven't been on that since 2022, but I started in 2018 and it made a HUGE difference In context ↗
  • depo provera injection · Helpedbeing on the depo Injection has helped a LOT! In context ↗
  • co-codamol · Helped a lotI've been prescribed 30/500mg co-codamol for a few years now, it's the biggest reason I'm actually still alive. In context ↗
  • pacing · Helped a lotpacing is the reason I'm still mostly mobile In context ↗
  • cane · HelpedAlso I got a cane a few years back and it makes walking so much easier. In context ↗
  • endometriosis excision · Helpedin 2020 I had an excision and it helped a lot with my endo symptoms In context ↗
  • moving out and living alone · HelpedLiving alone actually helped my M.E. because I could actually properly rest. In context ↗
  • Visible · HelpedI use visible: long haulers and ME/CFS! Been super handy for me In context ↗
  • accessible bathroom with built-in shower chair · HelpedI moved into a house with an accessible bathroom. Built in shower chair, hand rails and everything. It was a life saver. In context ↗
  • electrolytes · HelpedElectrolytes, knees supports and my cane! I've been able to go out on days I normally wouldn't be able to In context ↗
  • knee supports · HelpedElectrolytes, knees supports and my cane! In context ↗
  • loop earplugs · HelpedI finally decided to get the loop earplugs and honestly such a life saver especially in shops with screaming babies/kids! In context ↗
  • complan · HelpedI use complan and I think it's been one of the only things to keep me alive some times. In context ↗
  • multivitamins · Not saidI take multivitamins and I'm surviving. In context ↗
  • diphenhydramine / antihistamines · HelpedI'll take diphenhydramine, I do sleep very well, I fully conk out, but I still wake up the same exhausted level as every other day. In context ↗
  • melatonin · No changeI was prescribed it not long ago and it has absolutely no effect on me. In context ↗
  • nicotine patch · No changeI honestly didn't notice a huge difference other than feeling more jittery than usual. In context ↗
  • chronic illness psychologist · Not saidReferred to a chronic illness psych. In context ↗
  • nortriptyline · Much worseOnce I took it I got bombarded with awful symptoms non stop and *had* to stop taking it. In context ↗
  • calorie deficit · HelpedEnd of march I started a calorie deficit and so far it's the only thing that's working. In context ↗
  • intermittent fasting · HelpedI've also been intermittent fasting which is also helping luckily. In context ↗
  • short walks and exercise bike · Not saidI do short walks, or at least try get my steps in around my house. In context ↗
  • zoladex · HelpedI do have pain medication and am in medical menopause for my endometriosis. It's helped for sure but it's still there. In context ↗
  • wheelchair · HelpedI finally accepted I needed a wheelchair, and with the help of my friends, I got one today. In context ↗
  • Eating meat (including red meat) · WorseI was significantly more unwell when I ate meat In context ↗

Approaches: POTS medication · SSRIs · Diet · Mould avoidance · Other drugs and medicines · Pacing · Sex hormones

Their path

Very severeSevereModerateMildNear normalRecoveredonset2 y4 y6 y8 y10 y12 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
February 2014Chicken pox, then a chronic headache; went downhill fastI started as very severe, I couldn't move most of the time. In context ↗Very severe
around 2019Learned to pace; steady moderate baselineEventually I got my diagnosis and I learned how to pace and I have been steadily moderate since around 2019 ish In context ↗ModeratePacing and the energy envelope
2020 lockdownMost mild during lockdown, fewer infectionsI was at my most "mild" during lockdown *because* I wasn't getting sick over and over. In context ↗Mild
August 2023Hike that permanently lowered her baselineI did a hike in August last year and I think I've permanently lowered my baseline :D worth it In context ↗Moderate
2024Eight-day hospital stay; could not move for weeksI was hospitalised for 8 days last year and it completely destroyed me. In context ↗Severe
2025Longest crash after nortriptyline; slipped into severeI ended up in the longest crash I have ever been in. In context ↗Severe
mid-2025Hard crash lasting over a montha few months ago I crashed, hard. It was over a month before I started to gradually return to my baseline In context ↗Severe
February 2026Almost completely bedbound; got a wheelchairI eventually progressed to being almost completely bedbound. In context ↗Severe

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitusVision problems
Their words about their symptoms
  • Post-exertional malaiseMental strain makes my PEM harder. In context ↗
  • Brain fogI just can not focus enough because of my brain fog In context ↗
  • POTS & dysautonomiaI can't stand for very long without my legs giving way or passing out In context ↗
  • Mast cell (MCAS) & allergiesI take antihistamines when hayfever season is rife In context ↗
  • Sleep problemssometimes when I haven't slept for 2+ days (from pain + beyond exhaustion) In context ↗
  • Pain & fibromyalgiaNow I mostly suffer with joint pain. In context ↗
  • Headaches & migraineMy M.E. started with a headache that's never gone away. In context ↗
  • Gut problemsI've got IBS too so that's good to know! In context ↗
  • Heart symptoms & palpitationsI have tachycardia, but sometimes it gets *really* loud and started beating extremely hard In context ↗
  • Muscle weaknessI ended up being completely paralysed on the floor anytime I even slightly exerted myself In context ↗
  • TinnitusI also have tinnitus and that causes it too. In context ↗
  • Vision problemsmine do that a lot when I'm crashing and wearing my glasses only helps a wee bit In context ↗
  • Anxiety & low moodI was diagnosed with depression, had it since I was 8 In context ↗

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