I became ill in spring 2012 with what was likely a nondescript viral illness, during a period of heightened stress. I was prescribed the antibiotic phenoxymethylpenicillin, and I feel this may have played a role in my 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 about a month 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. In autumn 2017 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 hours and really struggling. I finished the short-term contract working mostly from home, unable to spend more than around 10 hours a week 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 early 2020, and I’m 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’ symptoms.
2018—: Onset of vision / visual processing issues, including illusory palinopsia (afterimages), blur, visual strain, photophobia (light sensitivity), and floaters; stiffness in right thumb joint; onset of tinnitus in right ear; nocturnal bruxism and associated jaw issues.