4.5 years of ME/CFS, mostly couch or bedbound, physical therapy made them crash
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 4.5 years
- Last post
- Dec 2019
In their words
- Condition: ME/CFS
it seems like I have cfs
In context ↗ - At worst: Severe
The fatigue is so bad I struggle to stand for more than a few minutes. ... The vast majority of my time is spent on the couch or in bed.
In context ↗ - Now: No benefit
I have been having ME-like symptoms since coming down with mono in 2015.
In context ↗ - Began after: glandular fever or EBV
I have been having ME-like symptoms since coming down with mono in 2015.
In context ↗
Summary
After coming down with mono in 2015, the user was ill for 4.5 years without a diagnosis, with constant fatigue, severe muscle weakness and atrophy, and sleeping 12 hours or more a day. Most of their time was spent on the couch or in bed; they could not drive safely or care for themselves, and physical therapy made them crash for weeks. They are on disability for other diagnosed conditions.
Ask Miruvor AI
What they tried
Their words about each treatment
- physical therapy · Much worse
I tried going to physical therapy, but even basic stretches made me crash for several weeks.
In context ↗ - Tegretol · Much worse
The worst was my reaction to Tegretol, which I only took for two days.
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. The chart starts 4.5 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| 2015 | came down with mono; ME-like symptoms beganI have been having ME-like symptoms since coming down with mono in 2015.In context ↗ | Not stated |
| 2019-11-24 | mostly on the couch or in bed, unable to care for themselvesThe vast majority of my time is spent on the couch or in bed.In context ↗ | Severe |
| 2019-12-17 | still undiagnosed, awaiting endometriosis screening before an ME diagnosisDespite not having a diagnosis, my condition is very realIn context ↗ | Severe |
Adverse events
- Physical therapy / physiotherapy“even basic stretches made me crash for several weeks” In context ↗ Made symptoms worse
- Carbamazepine (Tegretol)“The worst was my reaction to Tegretol, which I only took for two days. It caused every nerve in my body to ignite with severe, searing, electrical pain, but was concentrated in my spine.” In context ↗ Nerve pain
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
even basic stretches made me crash for several weeks
In context ↗ - Sleep problems
I sleep a minimum of 12 hours a day, but the longest I’ve slept for is 36 hours.
In context ↗ - Muscle weakness
I have severe muscle weakness and atrophy throughout my whole body.
In context ↗ - POTS & dysautonomia
the temperature change and water pressure really affect my orthostatic symptoms
In context ↗ - Heart symptoms & palpitations
I already have a super irregular, generally high heartbeat and low blood pressure.
In context ↗ - Mast cell (MCAS) & allergies
I also seem to have random histamine release with unpredictable triggers.
In context ↗ - Headaches & migraine
I did find out I had chronic migraine with aura
In context ↗