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My CFS/ME Symptoms

First published: Dec 2021

To say that I’m a bit upset writing this page would be a huge understatement. In early 2021 I was 95%+ recovered from this ridiculous illness. Suddenly a whole new symptom-free world of opportunities was reopening too me and I was beyond excited. This page was supposed to be an illustration of the myriad of ways CFS/ME can affect someone and what overcoming all those symptoms can mean. But then it came time for me to have my first Vaxzevria (AstraZeneca) COVID-19 vaccination…

The Setback

Within days of my first jab everything was relapsing, plus I had some extra new symptoms to add to the list. The second dose made things even worse. Now, 6 months later, I’m miles away from where I was in my recovery and really feel like remission is nowhere on the horizon. I am having moments of feeling almost human, but any exertion or stress usually sends me into a tailspin which can take hours or days to recover from.

Me, briefly hospitalised after my first vaccination
Skin ulceration on inside of left elbow (jab in left shoulder) after the tiny purple pin-prick marks joined together.
Red marks on thigh
Red marks on other thigh
Red marks on other thigh
Purple, bruise-like patch on left palm.
Really sore purple, bruise-like patch deep under skin on left palm.

I live in Western Australia where the unvaccinated are excluded from various sections of society by government mandate, so I’m hoping to obtain an exemption from receiving any further vaccinations to allow me to get back on my previous path to recovery. Without this I will have to accept whatever restrictions are imposed on my civil liberties. Consciously taking something again that has so clearly made my CFS/ME so much worse is utterly unthinkable.

My Symptoms

Symptom Pre Remission Remission Post Vaccine
Abdominal Pain 0 0 3 (0-7)
Lung Pain 0 0 1 (0-5)
Post Exertional Malaise 6 1 8
Fatigue 6 1 6
Headache 6 0 6
Joint Pain
& Stiffness
3 0 4
Muscular Pain 4 1 4
Bone Pain 2 0 3
All over body pressure/heaviness 4 0 4
Weakness 5 1 6
Heart Pain 4 0 5
Tinnitus 6 3 7
Brain Fog 5 2 6
Tooth/Gum Ache 2 0 4
Viral Feeling 3 0 6
Calf Fasiculation 2 0 6
Tendon Pain
4 0 7
6 1 8
Alcohol Intolerance 3 1 5
rash on shins
1 0 2
Hairy Leukoplakia 2 0 0
Malar Rash 2 0 2
Temperature intolerance 4 2 4
Diarrhoea 3 0 6
Depression 2 0 1
Anxiety 3 1 4
Hours/day feeling good 4 16 3
CFS/ME symptom scores pre and post remission and post COVID-19 vaccination.
0 = No symptoms, 10 = 100% of the time or most excruciating imaginable.