I became ill in spring 2012 with a nondescript viral illness during a period of heightened stress. I was erroneously prescribed an antibiotic — most likely penicillin or amoxicillin — and I feel this may have played a role in me developing a long-term illness.
For several years I lived with three core symptoms: mild fatigue, mild muscle pain and tenderness, and unilateral tinnitus that started a couple of weeks after I first became ill. Throughout this period, I was able to work full time (though often relying on the relative flexibility of academia) and I could still exercise regularly.
My symptoms started to increase in severity in late 2016, and I wasn’t able to exercise or remain in work. It was around this time that my symptoms became consistent with ME/CFS. I started a new position after a period of 8 months out of work, but it was too much; within months I was down to part time and really struggling. I finished the short-term contract working mostly from home and unable to spend much time in front of a computer due to extreme fatigue, vision issues, and a feeling like my brain just wasn’t able to keep up and process information correctly. I have been unable to work at all since 2019, and am mostly housebound.
Rough timeline of diagnoses and symptoms (non-exhaustive)
2009/2010—: Raynaud’s, Irritable Bowel Syndrome (IBS), periods of heart palpitations.
April/May 2012—: Fatigue, general pain, tinnitus (left ear), swollen cervical lymph node, dry eyes, infrequent and intermittent numbness in fingers on waking from sleep.
Spring 2015: Appendectomy for granulomatous appendicitis.
Autumn 2016—: Exertional intolerance and post-exertional malaise (PEM), muscle tenderness, sore throat (especially on waking), tender lymph nodes, worsening fatigue, light swelling and darkening around eyes, infrequent and intermittent localized numbness on surface of left leg on waking, muscle spasms/twitching, stiffness (particularly in the thoracic spine, left side of neck and upper chest), sensation of internal vibration/tremor, ‘tired but wired’.
2018—: Onset of vision / visual processing issues (illusory palinopsia (afterimages), blur, visual strain, photophobia (light sensitivity), floaters), stiffness in right thumb joint, onset of tinnitus in right ear, nocturnal bruxism and associated jaw issues.