ME/CFS
Severe → no benefitIll for 8.5 years
Mild ME/CFS worsening to two hours upright a day, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 8.5 years
- Last post
- Jun 2024
In their words
- Condition: ME/CFS
I have ME/CFS with severe discomfort/myoclonus.
In context ↗ - At worst: Severe
I can only last ~2 hours a day upight/sitting down
In context ↗ - Now: No benefit
my condition hasn’t improved.
In context ↗ - Says they never had: POTS & dysautonomia
mine doesn’t seem to accompany dizziness
Summary
Trail 21149, a 23-year-old man, had mild ME/CFS from 2016, exercising regularly but never improving beyond a point, with a constant localised headache. From 2021 came body discomfort and worsening breathlessness, and from September 2023 jerking and myoclonus that broke his sleep. A crash in June 2024 lowered his baseline; he could sit up only about two hours a day, and clonazepam only slightly suppressed the jerking.
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What they tried
Also tried
stopped going to school / not going out or walking too much· Helpedclonazepam· Helpedexercising regularly· No changemedication for intestine inflammation· Not said
Their words about each treatment
- exercising regularly · No change
exercised regularly but could never improve beyond a certain point
In context ↗ - stopped going to school / not going out or walking too much · Helped
my sob symptom got better after nov when i stopped going to school
In context ↗ - medication for intestine inflammation · Not said
currently taking medication for intestine inflammation
In context ↗ - clonazepam · Helped
myoclonus meds (clonazepam) seem to help a bit to suppress the jerking
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 |
|---|---|---|
| 2016 | mild CFS began; exercised regularly but never improved beyond a point2016-2021 - mild CFS. exercised regularly but could never improve beyond a certain point.In context ↗ | Mild |
| 2021 | body discomfort and trouble sitting; level dropped to mild-moderate2021-2023 - started to experience discomfort in my body which i could roughly feel ... (mild-moderate CFS)In context ↗ | Moderate |
| Sept 2023 | jerking and myoclonus began and slowly worsenedSept 2023 - started to experience jerking in my body. it slowly became worse as i did not change my lifestyleIn context ↗ | Moderate |
| 2024-06-28 | crash last weekend lowered baseline; jerking and discomfort all dayI just had a crash last weekend and it seems to have lowered my baseline. ... I can only last ~2 hours a day upight/sitting downIn context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Headaches & migraine
I have a localised chronic headache on my right prefrontal area that never goes away.
In context ↗ - Pain & fibromyalgia
started to experience discomfort in my body which i could roughly feel
In context ↗ - Breathlessness
i have been experiencing more instances where i feel like i am catching up on my breath
In context ↗ - Sleep problems
it affects my sleep as i keep jerking in bed and i cannot fall asleep due to that
In context ↗ - Gut problems
i have a portion of my small bowel constricted since 2015 when i had a bowel obstruction
In context ↗