Jennifer Brea's Chronic Fatigue (ME/CFS) Recovering Story
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 8 years
- Published
- May 2019
Summary
Underwent spinal surgeries over several weeks to correct craniocervical instability (CCI) and tethered cord syndrome, wore a neck collar (Philadelphia or Aspen Vista) during recovery, and found the drug Mestinon (pyridostigmine) helpful for symptoms. She had been ill with ME/CFS for eight years, wheelchair-bound for nearly all of it, and hit her low point about six months before surgery with breathing trouble, flaccid and numb legs, and impaired speech and cognition. Seven weeks after surgery she was out of the wheelchair, her POTS went into remission the following March, and by six months post-op her sound, light, vibration and touch sensitivities, muscle twitching, air hunger, restless legs, brain fog, memory issues and flu-like symptoms had all resolved, leaving her able to walk, lift light weights, and do an hour of water aerobics. The piece describes her ME as "in remission" and speculates it is just a matter of time before it is totally gone, though it notes her spine was still healing at the time of writing, so full durability wasn't yet confirmed on the page.
What they credit
Credits Craniocervical surgery, POTS medication, Alternative therapies, Surgery & structural, Craniocervical fusion / tethered cord, Mestinon / pyridostigmine.
Symptoms mentioned
Symptoms: Brain fog, Breathlessness, Flu-like symptoms, POTS & dysautonomia.
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