Housebound with ME/CFS at worst, now nearly back to normal after time and healthy habits
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 6 months
- Last post
- Jul 2024
In their words
- Condition: ME/CFS
I have what most would describe as mild CFS/ME, diagnosed recently after an EBV infection about 2 years ago.
In context ↗ - At worst: Moderate
I wouldn’t say bed bound, more like house bound. Very little energy to do much other than walk like a zombie around the house.
In context ↗ - Now: Near normal
I feel like my energy levels are about 80-90% returned to pre CFS levels. I have some ongoing side effects that I’m still dealing with (namely chronic but mild headaches which I blame on my deregulated nervous system)
In context ↗ - Began after: glandular fever or EBV
diagnosed recently after an EBV infection about 2 years ago
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
ME/CFS followed an EBV infection about two years before their July 2022 post; they described it as mild and were housebound at worst with almost crippling fatigue, severe brain fog, mood issues, muscle aches and dizziness. Symptoms eased gradually from six months in, but a GP-suggested exercise physiology routine worsened them and they improved again after stopping. By July 2024 energy was 80-90% of pre-illness, credited to time, healthy habits and not stressing about recovery, with mild chronic headaches remaining.
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What they tried
What they credit
Also tried
Their words about each treatment
- exercise physiology · Worse
the accumulation of physical activity on top of work was just too much ... my symptoms were more harsh and more often
In context ↗ - time · Helped a lot
For me, recovery came down to a combination of time, following healthy habits, and not getting stressed about the pace of my recovery.
In context ↗
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| about 2 years before July 2022 | EBV infection; crippling fatigue, brain fog, mood issues, muscle aches, dizziness; houseboundWhat began as almost crippling fatigue, severe brain fog and mood issues, muscle aches and dizzinessIn context ↗ | Moderate |
| from about the 6 month mark | symptoms began gradually easingjust the symptoms described gradually felt more and more mild from about the 6 month mark onwardsIn context ↗ | Moderate |
| a year before July 2022 | could walk only 10-15 minutes and crashed from simple exertionsA year ago I couldn’t really walk for more than 10-15 minutes and was crashing over the simplest random exertions like cleaning up the house or going out to dinner with friends.In context ↗ | Moderate |
| a few months before July 2022 | GP-suggested exercise physiology routine (weights, treadmill run/walk) worsened symptomsBut the accumulation of physical activity on top of work was just too much, and even though psychologically I felt more positive, my symptoms were more harsh and more often.In context ↗ | Mild |
| 2022-07-08 | stopped exercise physiology; hour-long walks and slow laps swimming without PEMBut now I can do an hour walk or swim very slowly a few laps at the pool without discernible PEM.In context ↗ | Mild |
| 2024-07-13 | energy 80-90% of pre-CFS, rare fatigue waves, mild chronic headaches remainI feel like my energy levels are about 80-90% returned to pre CFS levels.In context ↗ | Near normal |
Adverse events
- Graded rehab and self-made programmes“the accumulation of physical activity on top of work was just too much ... my symptoms were more harsh and more often” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
was crashing over the simplest random exertions like cleaning up the house or going out to dinner with friends
In context ↗ - Brain fog
severe brain fog
In context ↗ - Headaches & migraine
chronic but mild headaches which I blame on my deregulated nervous system
In context ↗
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