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ME/CFS Very severe → much betterIll 12 years before improving or writing

Bedridden with ME/CFS for two years, now much better

Grove 19964 on RedditLast post Feb 2023

Condition
ME/CFS
At worst
Very severe (bedbound, unable to do basic care)
Ill before improving or writing
12 years
Last post
Feb 2023
In their words
  • Condition: ME/CFSI have had CFS for 11 years now. In context ↗
  • At worst: Very severeI was bedridden for over a year (couldn’t even go to the bathroom) In context ↗
  • Now: Much betternow into my twelfth year of the illness and been working part time consistently for years, whilst managing to do small amounts of housework also In context ↗
Read from 14 of their posts and comments; links to the 10 this page draws on

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Summary

She fell ill with ME/CFS at 14 and spent the first two years bedridden; at one point she couldn't even get to the bathroom. She gradually improved and for years managed part-time work and some housework, using rest breaks every 15 minutes for housework. A full-time office job in 2021 triggered a relapse, and her COVID vaccines gave a brief lift but she later reported a general decline since the shots. Pregnancy left her bedridden again in the first trimester, and by 2023 she reported she was improving.

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What they tried

Also tried

immunosuppressants· Helped a lotBluetooth speaker playing rain sounds· Helpedtherapy· No changePfizer covid vaccines· Worse
Their words about each treatment
  • therapy · No changeI did therapy once a week for two years and I don’t think it improved my cfs but it definitely made me feel happier in general In context ↗
  • Pfizer covid vaccines · WorseOverall I think my ME has taken a general decline since the shots. In context ↗
  • immunosuppressants · Helped a lotgoing onto immunosuppressants for a week (due to extreme eczema) that they may be helpful, as this was one of the best weeks I’ve ever had In context ↗
  • Bluetooth speaker playing rain sounds · HelpedI have a Bluetooth speaker on my bedside table that plays the sound of heavy rain. It’s a life saver. In context ↗

Their path

Very severeSevereModerateMildNear normalRecoveredonset3 y6 y9 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 were
2010 (age 14)fell ill with ME/CFS; bedridden for over a year, unable to get to the bathroomI got sick at 14 too ... I was bedridden for over a year (couldn’t even go to the bathroom)Very severe
2021-01-03improved after the second year from bedridden to mild; housework with rest pauses every 15 minutes, 10 hours a day out of bedI was bedridden for over a year (couldn’t even go to the bathroom) and now probably would be considered mild In context ↗Mild
2021-03-03relapsed two weeks into a full-time office job; had to hand in noticeI’m two weeks in and already on the edge of a relapse. In context ↗Moderate
2022-04-18pregnancy: back to being bedridden in the first trimester, off work, 10% of houseworkI was basically back to being bedridden like I was 10 years ago. In context ↗Severe
March-April 2022started to improve after the awful first trimesterThings are starting to get better in the past three ish weeks In context ↗Moderate
2023-02-18reported still improving, happy in life with full acceptance of CFSI am even happy in life ... although I only noticed since starting to improveMild

Adverse events

Symptoms mentioned

Anxiety & low moodFlu-like symptomsHeart symptoms & palpitationsPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms

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