ME/CFS severe, now much better with pacing and rest, still crashes after overexertion
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 20 years
- Last post
- Jul 2025
In their words
- Condition: ME/CFS
I have mecfs for 20 years now, and have often recovered from severe to only mild symptoms
In context ↗ - At worst: Severe
I have recovered multiple times from severe to mild
In context ↗ - Now: Much better
I do get better/recover from it slowly after, and reach the mild+ state after a couple months
In context ↗
Read from 11 of their posts and comments; links to the 7 this page draws on
Summary
Kite 77649 has had ME/CFS for about 20 years and reports recovering from severe to mild several times, with relapses in summer driven by hay fever, heat and overexertion. They credit pacing, eating and hydrating enough, ORS, prioritising night sleep, stimulation-free rest and meditation, and say a mild state returns after a couple of months. They still crash after real overexertion.
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What they tried
What they credit
Also tried
Their words about each treatment
- eating sufficient food · Helped
Make sure you eat sufficient food, the body needs it to heal.
In context ↗ - ORS (oral rehydration salts) · Helped
Make sure to hydrate sufficiently, and try adding ORS (oral rehydration salts) too
In context ↗ - good night's sleep / night sleep rhythm · Helped
Good night's sleep should be prioritized. ... Aim to get back into a healthy night sleep rhythm, slowly
In context ↗ - no stimulation rest · Helped
Make sure to get sufficient no stimulation rest, avoid using the phone, tablet, tv, etc.
In context ↗ - meditation, yoga nidra · Helped
To calm the body down, try meditation, yoga nidra or something else that you like.
In context ↗ - Pacing · Helped
8. Pacing ... What helped me prevent pem was always leaving at least one day between training sessions.
- Dymista nasal spray · Helped
Currently using Dymista nasal spray and it works great for getting rid of my allergy symptoms
In context ↗ - sun and nice weather · Helped
Seeing the sun and nice weather does help me recover faster however
In context ↗
Approaches: POTS medication · Mind-body practices · Pacing · Radical rest · Supplements
Their path
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 first step with a time is 20 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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
| When | What happened | Where they were | After |
|---|---|---|---|
| ~2005 | ME/CFS onsetI have mecfs for 20 years nowIn context ↗ | Not stated | |
| — | severe ME/CFSI have recovered multiple times from severe to mildIn context ↗ | Severe | |
| — | recovered from severe to mild several timesI do get better/recover from it slowly after, and reach the mild+ state after a couple monthsIn context ↗ | Mild | Pacing and the energy envelope |
| summer 2025 | summer crash after hay fever, heat and overexertionCurrently in a crash tooIn context ↗ | Moderate | |
| July 2025 | slow recovery back to mildI usually end up at mild or even betterIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still crash if I *really* overexert myself
In context ↗ - Flu-like symptoms
Yes, slightly swollen (popliteal, armpits and sometimes neck) and a bit painful.
In context ↗ - Temperature regulation
The sweating feels unnatural, somewhat similar to when one is sick.
In context ↗ - Mast cell (MCAS) & allergies
Yes, hay fever allergies: Grass and herb pollen.
In context ↗
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